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Archives (Older Posts) From 1999 || Back to Home Page

Here are messages from January 2000 through June 2000:

How I found your page: From a search engine
Comments about the web site: Dear Mary, Thanks for your kind words. I'm now home from my pheo surgery. Unfortunately they found evidence on my liver of Medullary Thyroid Cancer Cells, which means the medullary has spread. So after I have my thyroid removed There's going to be more to deal with. I read about your latest problem, and hope you don't wind up in the hospital. I much prefer being at home. The nurses are nice, but given the depth of MEN, I just feel like leave me alone. It's hard when all the workers keep asking how you're doing. Anyways, Good luck. You do have my prayers. Tina

How I found your page: From a search engine
Comments about the web site: Does what’s happening to me match the symptoms of Pheochromocytoma? Unexplained, unnecessary feelings of anxiety, as though I’m about to get in a fight or have to give a speech and haven’t prepared. These come suddenly and for absolutely no reason. I’ll think, ‘I have to post that letter’ and get a big rush of anxiety. I am not usually like this – I do not get anxious about posting a letter. With the anxiety comes a pounding, fluttering heartbeat and rapid erratic pulse (if this wakes me up in the middle of the night, it’s generally accompanied by heavy sweating – but if it happens during the day I don’t seem to sweat so much) When my heart starts to beat strangely, my blood pressure shoots up wildly (ie, 220 over 115) for a few hours (or goes up and down several times over a few days), then drops to an acceptable level (below 150 over 80, but sometimes not very much below) I get pounding in my ears and feel the pulse beating in my nose and lips. Occasionally a little fluttery pulse pounds in the small of my back, or my right calf, or my neck There is a lot of pressure in my head, not exactly a headache but peculiar – definitely not right – with severe tension in the muscles at the back of my neck. I get difficulties with eyes, especially my right eye, puffiness, peripheral vision reduced, feeling a pulse pounding in my right eye There is a persistent, specific pain in my right side, going through from abdomen to back I have leg pain – like cramps, sometimes pain in arms – occasional very severe leg pain I have spells of feeling queasy/giddy – tied in with pounding heart, etc. At the same time I feel quivering/shaking inside – a peculiar, weird feeling. I first started noticing some of these symptoms at the end of August, about four weeks after my hysterectomy. At first I attributed them to the after-effects of surgery but I no longer believe this is the case. The symptoms have got gradually but steadily worse since August. Presently I’m on a cycle where I feel perfectly well for between two and four days, then start having short sharp attacks with all the above symptoms – continuing for between two and four days – and then I feel perfectly well again for a few days. The difference between the days when I feel perfectly well and the days when I feel weird/peculiar is dramatic. I have kept a detailed record of these cycles in my diary. On the days when I feel ill I am more and more incapacitated – can’t think, can’t work effectively, constantly have to move about, jump, run, walk fast, do something strenuous to get rid of the excess adrenaline. I am slightly worried about setting off to run three miles when my blood pressure is already 200 over 97, and my pulse rate 100 but its the only thing that eases the symptoms, so that is what I do. Because I’m exercising all the time and using up so much energy, I’m more thin and fit than I have been for years. At present I’m working abroad so I’m not monitoring my blood pressure regularly as I didn’t bring the machine with me. I’m taking Alpha-blockers and water tablets and just hoping the drugs do their job until I get back to the UK. I’m thirsty all the time, possibly because of the drugs I’m taking. I do not believe this is ordinary hypertension. If someone can offer me an explanation that does not involve Pheochromocytoma I’ll be well pleased. Does what’s happening to me match the symptoms of Pheochromocytoma? Unexplained, unnecessary feelings of anxiety, as though I’m about to get in a fight or have to give a speech and haven’t prepared. These come suddenly and for absolutely no reason. I’ll think, ‘I have to post that letter’ and get a big rush of anxiety. I am not usually like this – I do not get anxious about posting a letter. With the anxiety comes a pounding, fluttering heartbeat and rapid erratic pulse (if this wakes me up in the middle of the night, it’s generally accompanied by heavy sweating – but if it happens during the day I don’t seem to sweat so much) When my heart starts to beat strangely, my blood pressure shoots up wildly (ie, 220 over 115) for a few hours (or goes up and down several times over a few days), then drops to an acceptable level (below 150 over 80, but sometimes not very much below) I get pounding in my ears and feel the pulse beating in my nose and lips. Occasionally a little fluttery pulse pounds in the small of my back, or my right calf, or my neck There is a lot of pressure in my head, not exactly a headache but peculiar – definitely not right – with severe tension in the muscles at the back of my neck. I get difficulties with eyes, especially my right eye, puffiness, peripheral vision reduced, feeling a pulse pounding in my right eye There is a persistent, specific pain in my right side, going through from abdomen to back I have leg pain – like cramps, sometimes pain in arms – occasional very severe leg pain I have spells of feeling queasy/giddy – tied in with pounding heart, etc. At the same time I feel quivering/shaking inside – a peculiar, weird feeling. I first started noticing some of these symptoms at the end of August, about four weeks after my hysterectomy. At first I attributed them to the after-effects of surgery but I no longer believe this is the case. The symptoms have got gradually but steadily worse since August. Presently I’m on a cycle where I feel perfectly well for between two and four days, then start having short sharp attacks with all the above symptoms – continuing for between two and four days – and then I feel perfectly well again for a few days. The difference between the days when I feel perfectly well and the days when I feel weird/peculiar is dramatic. I have kept a detailed record of these cycles in my diary. On the days when I feel ill I am more and more incapacitated – can’t think, can’t work effectively, constantly have to move about, jump, run, walk fast, do something strenuous to get rid of the excess adrenaline. I am slightly worried about setting off to run three miles when my blood pressure is already 200 over 97, and my pulse rate 100 but its the only thing that eases the symptoms, so that is what I do. Because I’m exercising all the time and using up so much energy, I’m more thin and fit than I have been for years. At present I’m working abroad so I’m not monitoring my blood pressure regularly as I didn’t bring the machine with me. I’m taking Alpha-blockers and water tablets and just hoping the drugs do their job until I get back to the UK. I’m thirsty all the time, possibly because of the drugs I’m taking. I do not believe this is ordinary hypertension. If someone can offer me an explanation that does not involve Pheochromocytoma I’ll be well pleased.

How I found your page: From a search engine
Comments about the web site: what was the "old" name of the pheochromocytoma syndrome?

How I found your page: From a search engine
Comments about the web site: What a joy to find this page! I was diagnosed with pheo in November 98 and was operated on to remove a 'giant' pheo on Xmas Eve 98. I have been well without medication since then. I am lucky to live in a centre for excellence in the UK here in Nottingham. I have been told that because of the size of the tumour it was most likely to be malignant and that I have 50/50 chance to living beyond 5 years! Of course I will! I have a job that I adore and can't wait to get to work in the mornings! I am the administrator of the National Governing Body of Ice Hockey here in the UK and as I didn't start this job until I came out of hospital, can honestly say that my pheo has done me good. I have read all the postings on this site and feel that I have been very, very lucky. Even though my pheo filled the whole of my abdomen and weighed in at a cool 4 lbs, it was all removed. I know that this will grow back in more awkward places, but I am well NOW and will remain so as long as I have this joy in life that I have. May I wish all and any of you who need it the peace and courage of life. If I can be of help to anyone, please mail me. Don't be shy!

How I found your page: From a search engine
Comments about the web site: Hello to all. I had a right adrenal gland (and pheo) removed Jan. 98 and my thyroid removed Feb. 98 (papillary carcinoma). I've tested negative for genetic syndromes. My question concerns pheo follow up. Mine has consisted of MRI, Octreotide, and 24 hr. urine collection. I've just read of the plasma test discussed in the June or July New England Journal of Medicine. Has anyone had this test? Is it now being trusted and used? Thanks for any feedback and good thoughts and prayers to all. Cathy

How I found your page: Guess ;)
Comments about the web site: Hi everyone. I recently passed by my year anniversary of the onset of symptoms. I was thinking of printing out the message board to share at my next doctor visit, but I then realized "Satan" might not appreciate the references I made in an earlier posting. LOL. Just might have to find a way to white that one out. Anyway, I am still here & we are assuming the same is true for the pheo. The combination of meds I've been taking has been helpful for the most part, but due to some fainting spells during BP lows,we are working on lowering the cardura and adding a beta blocker. I just HATE adjusting or changing meds, it screws up my whole system for awhile. Episodes continue a little more frequently lately and the trembling has returned. I was interested to see Kathy's comments about her son's pupils. I had one occurrence of extreme dilation to both which lasted two days. The docs ruled it as possible med side effect.I have been experiencing weight loss a little more quickly , but also received a diagnosis of Hashimoto disease which generally causes weight gain. At least that will help keep a balance ;-). Take care all, you are in my prayers and thoughts.

How I found your page: Member
Comments about the web site: Casey has a good link to a most informative site on endocrine disruptors, and very scientific. We wanted to be sure and post it here, because this is really a no-nonsense discussion on how we can benefit from nature to help take better care of ourselves: ECME: Environmental Estrogens & Other Hormones

How I found your page: From a search engine
Comments about the web site: Sorry about that. The board wouldn't accept the HTML code anymore, so just click on the words "Estrogen Link - Click Here" to go to the site. :-)

How I found your page: From a search engine
Comments about the web site: For a month now I have had "pounding heart" at a pulse of about 95-100, with blood pressure of 150/100. It's pretty constant, doesn't change if I am up or down. I have a lot of trouble sleeping due to the pounding and wake up every hour or so. Two other symptoms are diarreah for no dietary reason and I'm having trouble getting through my weight-lifting routine (which isn't extreme, just for toning). I don't have headache tho... Blood Tests have ruled out thyroid. Does this sound like a possible Pheochromocytoma pattern?? Thank you very much in advance, -Linda

How I found your page: From a search engine
Comments about the web site: Hello Everyone! Can someone please contact me or post the symptoms to this disease. I have been seeing my family doctor over the past few months and I have most of the symptoms of hypothyroidism and her major concern was my high BP (150/110) and I am only 24. She knows there is obviously a reason for it, an echostress test shows my heart is normal but the irregularity in the blood vessels in my eyes show long term problems so she ordered a thyroid panel TSH to be done and that came back negative. She is very sure my problems are "Endocrine" related so I am seeing an endocrinologist in 2 weeks. I have had pain on and off in my kidney area for the past 10 years or so and my weight has been ballooning over the past year. I am only 24 and I'm very worried about what is wrong with me (as there is alot going on). Any suggestions as what to ask the endo when I go? I am still learning and the back pains are causing my doc to lean toward adrenal problems. Thank You all for listening and any input would be greatly appreciated! I hear endocrine problems are difficult to diagnose without asking for the proper tests and being an educated patient. Thanks Again! Tracy

How I found your page: From a search engine
Comments about the web site: Hi, I have been having classical symptoms of pheochromocytoma for quite some time now off and on since the birth of my child almost 7 yrs ago. It has really gotten worse though since October. Have been through multiple x-rays and lab tests as well as 24 hr urines, but all negative. I have heard that the urines are not always accurate. Does anyone know about this? I don't know where to go from here. Would appreciate any insite. Symptoms are getting daily now and harder to cope with. Would appreciate any help. Thank you.

How I found your page: Member
Comments about the web site: My name is Debra, and I am one of the founding members of the Pheochromocytoma Support and Information Group. I feel it is extremely important at this time to welcome those who have never visited our site, and to give you some information about pheochromocytoma and this group. Pheochromocytoma is a very rare tumor. The symptoms of pheo vary, but the most common symptoms of pheo are severe hypertension, either sustained or episodic, pallor, headache, severe sweating, palpitations and anxiety. Although these are the most common symptoms reported, others who have posted to this board may have had other symptoms. Many other more common illnesses also exhibit all or some of these symptoms. It is very important to seek proper medical attention should you have any of these symptoms, especially if they occur suddenly. At this point I would like to state that most of our members who have regularly posted to our support site, have had either recurring pheo or malignant pheo, both of which are extremely rare occurrences. A lot of cases of recurring pheos are related to genetic disorders such as VHL and MEN syndromes. In most cases, about 90%, once a pheo is diagnosed and removed, the individual is cured, and will probably never have another pheo again (although these individuals need to be followed for the rest of their life). If your doctor is suspicious of pheochromocytoma there are some standard tests that are initially performed. 24 hour urine tests for catecholamines, metanephrines and VMA are fairly standard in the beginning. These must be performed correctly; the urine must be kept refrigerated during collection, and an acid preservative added to the collection bottle. In some cases, unless an individual has an episode during collection, the urine test could be negative, with a pheo present. There is a blood test available which tests Plasma Metanephrines and Catecholamines, which has been approved for diagnosis of pheochromocytoma. This test is available through the National Institutes of Health, and commercially through the Mayo Clinic. I would like to invite you to visit the site link which explains this important test at http://members.aol.com/ThreePeb/biodiag.html Should you and your physician suspect pheochromocytoma, or if you have VHL or MEN, I would suggest this blood test. If you email me at Angldove77@aol.com I would be more than happy to give you more information. Once a diagnosis of pheo has been established and the tumor located, surgical removal of the tumor is standard treatment if possible. This is the most difficult part, as many patients are operated on by inexperienced surgeons. It is vital to ask your surgeon how many patients they operate on a year for pheo. An experienced surgeon will do no less than 3-4 a year. We are a support group for people with pheo and related illnesses, and sometimes reading the postings can be frightening, especially if you are in the early stages of diagnosis. We are here for you, and will do what we can to ease your anxiety. Remember also that most people who have had pheo, and have had successful surgery, living normal lives without recurrence, are not the people who post to this board. We thank you for visiting, and we hope the information you find here is helpful. Thank you, Debra Harlander Co-Founder, Pheochromocytoma Support and Information Site A special Thank You to Dr. Pacak and Dr. Eisenhofer from NIH for assisting me in writing this article.

How I found your page: Member
Comments about the web site: Dear Debra: We all appreciate the information you have provided. It is very well stated, and it will help to guide those who come here via linking message boards rather than the home page. Thank you.

How I found your page: From a search engine
Comments about the web site:

How I found your page: From a search engine
Comments about the web site:

How I found your page: From a search engine
Comments about the web site: Help!!Can anyone tell me what it means to have low aldosterone? My endo said this. the lab report says, Aldosterone, Serum 3.7 Any help would be appreciated. Thanks Debbie scoggins@midsouth.rr.com

How I found your page: From a search engine
Comments about the web site: Hello, my name is Debbie from Memphis, TN. I have had alot of symptoms for several years and had no idea where they were coming from and neither did my doctorS. I found this site, and lo and behold, I thought I had found what I was looking for. I went to and endocrinologist, Dr. Gharji. he did blood work and a 48 hour urine test. During our meeting he ask me what drugs I was on. I responded, Paxil 20 mg, Xanax 1 mg./3 times a day. At that time he put his pencil down and said "you are having withdrawals from xanax. I said, no I don't think so. We discussed it for awhile, reluctant on his part, he had already made up his mind. I said " I still want all of the test run, no matter whether you think it is necessary or not. I also told him, that is why I had been taking Xanax, due to all of these problems. The problems including headaches, lightheadedness, shortness of breath,anxiety attacks, tachycardia,sweating. Of course, when I went in my heart rate was only 88, and my blood pressure was ok. I stayed at my sister-in-laws for a few days and she had a blood pressure monitor. She took it and it was 150/95 for 2 days and I didn't think anything else about it. I went to Wal-Mart one day and felt a very strange( my head and heart)so I took my BP on the free machine in the store. It read high, so I bought my own unit. Since then, about 1 1/2 weeks now, I have been taking by pressure and it is anywhere between 101/98 to 177/133. My pulse in really going crazy. It has been anywhere between 101 to 140. I fired my endo, to say the least, and am looking for another Dr. in Memphis, TN. that can handle a woman with a brain and is not intimidated by questions. Oh, by the way, I called my endo, on the night my pressure went to 177/133 and he said "call me tomorrow and maybe I should put you on some BP medication. I called the next day and he had his nurse tell me "You need to go see a Dr ???. this Dr. was a drug rahab person?? He didn't even have the nerve to talk to me himself. I think he just couldn't handle a woman that questioned his judgment. I just told the nurse to tell him " that the drug rehab was not necessary that I had taken myself off Xanax6+ weeks ago. I would no longer need his services and that I would find another Dr. Since then, I went to my primary physician, he prescribed Traimterene over the phone, which did not help. I then went in to see him, he doubled my dose of BP medication, and also, put me on Tranxene 7.5 x 2 daily. they seem to help a TINY bit. I also, take Paxil 20 mg. 1 daily. I have another endo now, and my appointment is Mar.2. I don't know this Dr, and and not sure whether to see him or not. He just had an appointment earlier than the other ones. His name is Poormotabbed, has anyone ever heard of him. right now, he seems to be my only choice. Do I need to stop taking this medication before I have anymore testing done. God forbid this test is messed up. My first test, by the intimidated Dr., supposedly came back ok, EXCEPT for low Aldosterone (3.7 ng/ul). My understanding is that Ald. normal is 5-41 ng/dl. do you think I should worry about this reading. My endo said "do not worry about it, when he called the first time with my results. My cholesterol was 258, which I have never had high cholesterol in my life. some of the readings were borderline. But QUOTE" do not worry". Easy for him to say, this is not his body. He isn;t the one feeling like he is going to pass out, of have a stroke, or go crazy. If you can help in anyway, I would truly appreciate it. I need a endo doctors name in Memphis, Tn., other than the Dr. P, above. Any recommendations?? Any advice, opinions, knowledge would be greatly appreciated as soon as possible. I believe I have PHEO, HELP ME.!! I am really scared not to take my medication, but I feel I shouldn't due to any testing that might be needle. HELP HELP HELP PLEASE ASAP.... thanks for your time Debbie scoggins@midsouth.com

How I found your page: From a search engine
Comments about the web site: this is another post my Debbie. I forgot something. I have already had an MRI twice, regarding rectal bleeding, they found nothing, but they did find a tumor an my right adrenal gland, about 2.4 cm. Just wanted to add this so anyone who can help will know. also having some pain on the right side where my kidney lays. Thanks again.. debbie scoggins@midsouth.rr.com

How I found your page: Member
Comments about the web site: Do you have to wait after CT contrast to make sure it's out of the body before trying to do urine or serum tests for pheo?

How I found your page: From a search engine
Comments about the web site: I have been diagnosed as having pheochromocytoma through the 24-hour urine tests and have been referred to a endocrinologist on Feb. I have been trying to do as much research as I can about this disease. I have been having these symptoms as long as I can remember, sometimes more and sometimes less. I have a sensory hearing loss and wonder if this could have been caused by this disease? Twenty-three years ago for a 10 week period I got so dizzy that I could hardly walk without holding on to something. I went to many doctors and no one could decide what was wrong. Could this have been caused by this disease? 28th. In the meantime, should I try to just rest and try to stay calm or be very active in order to burn off the extra adrenaline?

How I found your page: From a search engine
Comments about the web site: After the surgery, do you just live normally or do you have to be on medication, eat special diets, have close monitoring, etc.? Can a endocrinologist tell what kind of tumor or tumors you have from the urine tests? How many of you people have other family members with the same disease? I have thought I was having anxiety attacks for many years and it has been a great embarrassment to me. I can't even tell anyone what an effort I have put into covering up what I was feeling inside, as if I had some control over it.

How I found your page: Member
Comments about the web site: Dear Friends: Debra (our Angeldove) has requested that I add her latest NIH news to her Debra's Year 2000 Update Page and place it in the HTML on this board also. After reading over her update, I think it is something each and every one of us should read. Debra is in a situation where many of us reside, having to live daily and nightly with a pheochromocytoma condition which has no ready-made solution available to stop the problem. So she has to search for more answers through yet more doctors, at a time when she doesn't need to be faced with more medical tests. Pease take some time to read her story, and you might want to send her an email of support to let her know we all understand and care.

How I found your page: Member
Comments about the web site: G'day to all, well here we are again. Finally had Adrenal Vein Sampling done for the 2nd time round. No complications, just a feeling the day after, that I had done 10 rounds with Tyson in the ring. I will know the results by the 9 th March. Also had another CT scan done, which showed the tumour has only grown 10mm in 12 months, this result I was pleased about. My Prof.did tell me it was a slow growing one. At present I am experiencing feelings of nausea, sweating and frequent visits to toilet, also the need to lie down is overwhelming. I feel dizzy and my fingers cramp up. I ( my husband or daughter)now ring the ambulance who take me to the hospital for treatment, which consist of 100% oxygen, and some form of steroid injection. Now I am wondering if this condition called Hyperaldosteronism is in fact THAT. But today is a new day and we shall make the most of it, whilst feeling great. Take care to all, Femme

How I found your page: A friend told me
Comments about the web site: Like many of the stories I've read on this site, I too have had problems trying to get a correct diagnosis. I do have a tumor on my adrenal gland but since I'm showing very low levels on my tests but still have "episodes" elevated bp, jitters, heart palps, tightness in the throat, chest "aches"', etc. The BP med helps, except it is a beta blocker not an alpha and of course they have me on Xanax since everything is due to "anxiety". I'd love to get on this site and discuss more and find a doctor or two that will help. (I've found one endo guy who said that my pheo is operable laproscopically.) I guess what I'm looking for is some other routes to take and an ear to listen. At least now I don't feel like I'm going crazy. By the way, I live in N.J.

How I found your page: From a search engine
Comments about the web site: To Debbie: Please have the films of your MRI showing the tumor on your adrenal reviewed. Evidently a lot of Drs. are not aware of it, but pheos appear very bright on T2 weighted sequences. A high signal on both the T1 and T2 weighted images is consistent with a hemorrhagic pheochromocytoma, which is what mine was. Since you live in Tenn. I would try to go to Vanderbilt if I were you. Check out their website. Good luck and pleas e check back to us to let us know what is going on.

How I found your page: From a search engine
Comments about the web site: to Laura Reiss: Although my individual catecholamines were normal, the metanephrines were elevated at 3.1 mg/24hrs (normal range less than 1.3). This degree of elevation in metanephrines is diagnostic of a pheo. Review of prior MRI scans showed my adrenal tumor displayed a high signal on the MRI scan, both the T1 and T2 weighted images. This was consistent with a hemorrhagic pheo. Evidently none of my local Drs. were aware of how to interpret these tests correctly. I went to the Mayo Clinic for a second opinion/surgery. My diagnosis was further confirmed with a I-MIBG scan.I would definitely want the laproscopic surgery if the tumor is small enough. But make sure you only have and experienced surgical/anesthesiologist team working on you, and go some where where they have the most experience with this type of surgery for pheos. Perhaps start checking out the NIH, Johns Hopkins, Vanderbilt and definitely the Mayo. If you have a pheo you should probably be on Alpha blockers if you are on a beta blocker. You will need to be on both prior to surgery. I believe the alpha blockers will stop the "episodes". Please keep us informed of your progress.

How I found your page: A friend told me
Comments about the web site: Thanks for responding. I have been in touch with Angeldove77 from this site and have discussed my situation with a doctor a NIH. Right now I'm in the process of trying to get a blood plasma test done right and submit it to NIH. I'm wondering though why no doctor recommended that I have an MRI done of the tumor? From what you all are saying it sounds like that would have been a smart thing to do. Any guesses?

How I found your page: Member
Comments about the web site: Laura: The CT scan ordered by the cardiologist to evaluate what he thought was a liver cyst, demonstrated "a large mass in the right suparenal region....suspect this mass arises from the right adrenal gland, but ..cannot separate it from the right kidney." The endocrinologist I saw a month or so later ordered the MRI to find out if the tumor was separate from the kidney. I took the films with me for my visit to the local surgeon I had intended to use. He held the films up to look at them and right away said "you have a pheo". (he had operated on a few) He was the only local Dr. who thought I might have a pheo. In a follow up letter to my local referring endocrinologist, the DR. at the Mayo stated that the "high signal on the MRI scan, both the T1 T2 weighted images, was consistent with a hemorrhagic pheochromocytoma." Here is a quoted from a section in a journal of internal medicine titled "PHEOCHROMOCYTOMA " method of LEWIS LANDSBERG,M.D. Nrthwestern University Medical School, Chicago Illinois: "Magnetic resonance imaging (MRI) is also useful at identifying adrenal pheochromocytomas since the latter appear very bright on T2-weighted sequences." to be continued...

How I found your page: Member
Comments about the web site: continuation...(sorry for the interruption, but I am a slow typer and I didn't want to get bumped offline and have to start all over again.) ...." A problem is sometimes created when the CT scan, a localizing technique, is applied before the diagnosis is established biochemically. Although a negative CT scan is frequently helpful in rejecting the diagnosis in doubtful cases with borderline biochemical studies, the presence of an incidental (and unrelated)adrenal nodule may confound the diagnosis in patients without a pheochromocytoma. The MRI or MIBG scan may be useful in evaluating such cases, since pheochromocytomas should give a positive scan at the site of the nodule, while incidental adrenal nodules do not." Maybe A lot of non-surgeon doctors are not aware of this. Mine evidently were not. In fact I guess even the person reading the MRI must not have been.

Entry of Mar 9, 2000 at 03:02 [EST]
From: Lynda Nelson - lyndanelson@siberiancats.com

How I found your page: Member
Comments about the web site: I do not have the time nor the patience to go and cut and paste what I know is true. Ah gee too bad! What are you doing with you time besides feeling sorry for yourself!!! I didn't use your name but you did quit didn't you? I knew that you weren't  cut out for this...it requires thick skin and you live your life looking through Mary Poppins colored glasses. He is sick and (auto-edited: filter in use) now he is dead boo hoo! (auto-edited: filter in use) SO? You and your mother have done everything possible to trash the (auto-edited: filter in use) world why don't you crawl back into the woodwork from whence you came? Both of you have made a complete @ss out of yourselves! You're mean nasty and spiteful and it is typical of folks that live their life that way to lash out at others...always pointing a finger at everyone else for their problems...

Now go AWAY!!

Lynda

How I found your page: From a search engine
Comments about the web site: I filled out database entry last year. Are you going to release the info you've collected? how and when? I had my right adrenal removed in Sept 97 from PCC and this month was the first my 24 hr urine came back normal. I'm relieved for now but ever aware of the possibilty of recurrence. I live in Florida and my doc actually has another patient with same thing. How rare was that. She is great, unlike the Dr. Satan that most of you have found. Please let me know about that database info, Thanks

How I found your page: Link from another web page
Comments about the web site: My husband is in the hospital as I write, and they suspect Pheo. I can't believe I've found this site. I hope to talk to others here. I really need to talk, as this is frustrating! He's been thru so many tests, and then they don't talk to you! Is Pheo. cancer? I'm so scared...I hope someone gets this so I can continue a conversation. He has blood pressure attacks, 170/125, flushing, vision in one eye is blurred now, very sluggish after attack. Etc...

How I found your page: From a search engine
Comments about the web site: How rare is it for 9 year old girls to get this? My daughter has palpitations, anxiety, nervousness, sweating etc. Help.

How I found your page: Member
Comments about the web site: Dear Donna Sue, Stacy, Libby, Tuesday, I am going to send you all personal emails rather than post messages here. I need to answer in detail, with links and names for each of you.

How I found your page: From a search engine
Comments about the web site: I'll be brief. I just found out 2 days ago (3-16-00) that I have a pheochromocytoma on my adrenal gland. My Dr. is sending me to a urologist to have it removed. As I read up on how rare this is, I am wondering if I should look for a surgeon who has lots of experience with this. I live in Northern New Jersey, 45 minutes outside of NYC. Any suggestions?? Thanks, Bshort918@aol.com

How I found your page: From a search engine
Comments about the web site: my husbands cousin died of this ill ness..i would like to know whether i should get my child checked up for it and my husband.if so does the test have to be continuously repeated..my husband is 37 yrs old and my child is 10. thanks do reply meher

How I found your page: From a search engine
Comments about the web site: Hi Bob What tests have you had done to diagnose your pheochromocytoma? Have you had an MIBG scan? - this is really a very important test to do if the 24 hr. urine and plasma catecholamine test indicate pheo. This scan will help (but not guarantee) determine whether there are any more tumors. Yes, you certainly should have a surgeon who is very familiar with pheos. It is also imperative that you interview the anesthesiologist. I don't think I can stress enough how important it is to be monitored extremely closely during surgery by a very experienced anesthesiologist. Are you on any medications now? Most people with pheochromocytoma are on alpha blockers, such as Dibenzyline, and many are also on beta blockers, such as Atenlol, Propranolol, etc. This website is an excellent source of information!...Good Luck...Robbie

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Comments about the web site: I am somebody with ME-POTS. I have symptoms that mimic pheochromocytoma exactly. I need to talk with or go to someone who know about catecholamine disorders. Someone please help,

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Comments about the web site: Dear Kim: I will be emailing you as soon as I post here. I have to admit I know little about this illness that mimics pheo, but I think I can still provide information regarding catecholamines. If you are reading here first, be sure to check your email.

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Comments about the web site: This message board had many posts and was loading too slowly. So we organized, and the previous messages now be found at Messages from June 1999 to December 1999.

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Comments about the web site: Hi Meher, Bob, and Robbie. I'll be replying by email to each of you, because of specific information I need to send.

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Comments about the web site: Can anyone recommend a good Endo doctor (with Pheo experience) in S.Jose/Stanford area.....or possibly a research link at Stanford Thank you.

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Comments about the web site: Hello Mike. My endocrinologist in California is probably the best doctor in the world. He is Francis S. Greenspan, M.D. University of California and Stanford Medical Center. Perhaps you could contact his office and see if he or his staff can help or recommend someone to you. Please check your email.

How I found your page: From a search engine
Comments about the web site:

How I found your page: From a search engine
Comments about the web site: My name is Maggie -- MaggieFuss@aol.com is my email address. In 1996 I had a surgery for "ovarian remnant syndrome" which means that ovarian tissue was left behind following removal of my ovaries and that it had become functional and was creating cysts and pain. Besides the appearance of "ovarian cysts" in the pelvis (in a woman who supposedly had no ovaries), I had an FSH/LH level that was subclinical -- i.e. 2.5 -- I 54 years old at the time. the surgery was extensive and left me with multiple nerve damage in the pelvis. Accordingly, if they had removed all the ovarian tissue, my FSH/LH levels would have gone to post-menopausal. It is now four years later, and the levels are still sub-clinical as have been recently drawn and are 1.4 which means I am very pre-menopausal. Subclinical levels of FSH/LH from what I have learned on my own can also mean non-functioning pituitary or pituitary lesions. Recently, I have started to have additional problems -- hypothyroidism -- normal TSH levels but subclinical FreeT4 levels -- also -- I have developed terrible high blood pressure with frightening blood pressure spikes, pounding heart, tremors, hot flashes (despite estrogen replacement therapy) sweating. I am scheduled for a heart cath soon -- I have just been placed on Toprol XL a beta-blocker, which has stopped the symptoms. I have the feeling this is endocrine related. Where do I go for help? My internal med doc just told me these symptoms are impossible?????? The blood pressure spikes are 220+/110+ and my cardiologist is taking it very seriously. Heart cath is scheduled -- Any ideas or suggestions? I live in Michigan. MaggieFuss@aol.com currently

How I found your page: From a search engine
Comments about the web site: For nearly 4 years, I've been suffering "panic attacks"; the first one began 7 months after the death of my son and two grandchildren in a plane crash. The attacks continued randomly, sometimes one a day, sometimes not for days. I was prescribed Ativan, which worked very well. Then, about 3 years ago, the nonsensical release of adrenaline began - sudden jolts would wake me up, exercise wouldn't work it off nor would deep breathing. Have seen grief counsellors, psychologists, - even tried hyponotherapy! Finally, my dear doctor (a small-town northern British Columbia physician) suggested a Cat scan. Poof! A pheo in my left adrenal gland. The poor man was quite shocked and I think is in as much a dither about what-to-do as I am. It's almost a relief to know there's a physiological reason for all this excess adrenaline, but on the other hand...a tad scary. Thanks so much for creating this website. I've no idea what will happen next. I'll check in again. Thanks.

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Comments about the web site: Hi Stefijo, I received your email and have sent a reply. Leslie and Maggie. I am going to send email to each of you with replies also.

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Comments about the web site: HELLO EVERYONE. I AM 22 YRS.OLD AND HAVE HAD PROBLEMS FOR 5 YRS.THE SYMPTOMS ARE LIKE THIS: RACING HEART ONLY WHEN I STAND OR EXERT MY SELF IN THE SMALLEST WAY.HEARTRATE OP TO 170 FOR LITTLE REASON.SOMETHING THE DOCS. HAVE NOTICED. SEVERE ANXIETY OUT OF NOWHERE AT ANYTIME. I HAVE HAD THE URINE TEST WICH CAME BACK SHOWING TO BE A LITTLE HIGH. MY DOCTOR TOLD ME THAT IT COULD HAVE JUST BEEN BECAUSE I WAS NERVOUS AND THAT I WAS SIMPLY TOO YOUNG TO HAVE THIS PHEO.I WAS ALSO PREGNANT AT THE TIME OF THE 24 HOUR URINE TESTING. I DON'T KNOW IF THAT COULD HAVE MADE A DIFFERENCE. I FEEL LIKE MY WORLD HAS CRASHED AROUND ME. HAVE SEEN MANY DOCS. AND THEY ALL SAY THE SAME THING. WE CAN SEE THERE IS A PROBLEM BUT WE JUST DO NOT KNOW WHAT IS CAUSING IT. I WOULD APPRECIATE ANY ADVICE OR POSSIBLE ANSWERS. MY MAIN SYMPTOM IS THE RACING HEART WHEN I STAND. THAT IS WHAT HAS THE DOCTORS BAFFELED. THERE IS ONE MORE THING, BUT I DON'T KNOW IF THEY ARE RELATED.... I GET THESE AWEFUL PAINS IN MY STOMACH WHICH COME AND GO VERY QUICKLY.MY FACE GETS RED AND I BREAK OUT INTO A SWEAT WHEN THE PAIN OCCURS. FINDING THIS SIGHT HAS BROUGHT HOPE BACK INTO ME FOR AN ANSWER. I HAVEN'T SEEN A DOCTOR IN THE PAST FEW YEARS BECAUSE OF ALL OF THE DEAD ENDS I HAVE RUN INTO. PLEASE, PLEASE E-MAIL ME IF YOU THINK YOU CAN HELP.THANK YOU SOOOOO MUCH

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Comments about the web site: What wonderful people! Thanks so much for the messages. Thought for sure this would be a simple, straight-forward medical deal - left adrenal pheo, pop it out, life goes on. Aargh. My doc and the radiologist now want another cat scan. As Oprah says at the opening of her show..."here we go!". But before I lie on the table following the orders of a talking machine, I'm off to Italy for two weeks. There's a tumour rumour out there, but it can bloody well wait until I've seen the Sistine Chapel. So there. Take care, you wonderful people.

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Comments about the web site: My husband goes in for surgery tomorrow. He will have his adrenal gland and the pheo removed. (it's in the medulla) Very hard to find information especially on exactly what they do during the operation and post operatively. They will be monitoring him closely. The anesthetist (sp?) said the first 48-72 hours is crucial. He has a 7 cm tumor on his right adrenal. His hormone level (which ones, I don't know) are ten times the amount they should be. Can anyone give me information on the surgery itself?...complications?...what to be aware of?...Recovery? I would appreciate it.

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Comments about the web site: Help for a friend in the States - URGENT! I have a friend who has been told she is Men2 PB. I have Men2a and have not heard of this as a disease type (I am from the UK). I think PB means peripheral blood. Does she need more testing to ID thy specific type of Men, or are her docs not telling her the whole story? Please help. She's worried...

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Comments about the web site: Dear Leslie: We think you are a wonderful person, too! I am so sorry that you are being put off again of getting this pheo removed and out of your life. Be sure to tell the rest of us about your trip to Italy when you get back? I think it is great that you are focusing of doing something positive. We all know waiting seems endless.

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Comments about the web site: Dear Liz: What you are going through is awful, and you need some concrete answers from professionals. I will be sending you an email with some more information. Take care, and post or email me all you want. Sometimes it helps a little to just talk.

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Comments about the web site: Dear Judy: You and your husband are going through much right now, and hopefully that pheo will be out and he can get back to enjoying life soon. The one concern regarding surgery is that of anesthesia, but most surgeons are well aware that a pheo patient needs special observation. There is some detailed information on our site at Anesthesiology written by our volunteer member Dr. Williams.

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Comments about the web site: Dear April: I have MEN2a also, and my family has other varieties of the illness. I've never heard of MEN2a PB, unless it refers to occurances of abarrent blood vessel and nerve networks. I do have that. I will try to contact one of our NIH specialists who studies many, many cases of MEN and then I will tell you what I find.

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Comments about the web site: I wonder if anyone has ever had this problem. Over 6 months ago I had the VMA urine testing done 2 times and it was positive both times. Then I was sent for a cat scan that said possible pheo. I then decided to go to Vanderbilt for a second opinion. They did not believe that what showed up on the cat scan was a pheo so they ordered an MRI to confirm. It was negative. The did the blood tests and they showed high catecholamines....actually borderline so they did a clonidine suppression test. Still positive for high catecholamines. Then they ordered a MIBG -321 scan. It was also negative. They repeated blood tests...still shows elevated catecholamines. They decided to send me to the University of Michigan for a MIBG-123 scan because biochemically and clinically I was shown to have a pheo. Results again were negative. Now they say they are just going to watch me. My blood pressure stays under control with medication, and anxiety is ok as long as I am taking ativan. I'm just wondering if anyone else has ever had positive biochemical tests but negative scans of every kind. My doctor tells me not to worry but I was really hoping these last scans would tell the story. Any comments would be appreciated.

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Comments about the web site: Dear Connie: There are a number of us who have positive tests for pheo yet the tumor itself remains mysteriously hidden. I have an unfindable pheo, as do several other friends in the same situation. And some have the reverse, negative test results and a small pheo or some tumor can be found. Go figure? We have an illness that was fairly unknown until recently. I would say that if you have so many positive tests, that indicates a pheo. Are your doctors just looking in the adrenal area only? I am curious.

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Comments about the web site: My surgery was in Oct. 98. They removed my left andrenal gland and a 4cm pheo. I go for 24 hour urine test every now and then. I just had my second one and it came back negative. I wanted to share my good news. I have been symptom free for 1 1/2 yrs. Thank you.

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Comments about the web site: Dear Darla, hi! I have been wondering where you were, as I lost contact with you when 1) your email changed and 2) I moved. I will be able to email you now. I am glad to hear that you are doing better. I would like to discuss doctors and facilities with you since we are practically neighbors now. Sincerely, Mary

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Comments about the web site: Personal to Lynda Nelson: Please do not post any out of context messages. Your entries and email are being fed into this system, and the automatic filter is having to edit so much that what you are trying to say is making no sense. Plus, we do not know which person to whom you are directing your comments. Several of our members have requested that you do not post. For disclaimer reasons, we have not removed your posts. However, we are asking kindly that you use some graceful restraint. Thank you.

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Comments about the web site: Dear Lynda Nelson - In an effort to protect the online community, we would like to request that you no longer post to this board. We do not know whose son you are referring to, but your comments are not acceptable. Further, we have noted posts made by you last year which are also a violation of TOS. Please make no further posts or we will have to have you permanently banned from this and other boards. We would appreciate your cooperation.

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Comments about the web site: I am going to have a MIBG scan in a week to help locate extra adrenal pheochromocytomas. Are there any adverse side effects from the injection of the radioisotope that I should be concerned about?? Thanks, Joe

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Comments about the web site: I had surgery in jan.2000 for pheo, both adrenal glands removed. My tumors were not cancerous. Does pheo reoccur in other areas of the body ? Thank you.

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Comments about the web site: Firstly I would like to thank those who set up this support group. It really helps. I am after some info on the re-occurance of pheos. I had one removed in Oct 98 and have just been diagnose positive again after a 48 hr urine test. Nothing has shown up on the MRI scans and I believe that the next step is an isotope that will "stick" to the tumour site/s and identify them. Can anyone give me stats on the rate of recurrence. I must admit that although the first tumour was not malignant this latest episode has me concerned. Any info welcomed. thanks

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Comments about the web site: Hi! I am Blerta and I am very concerned about my dad. He is suffering from PHEOCHROMOCYTOMA. I would like very much to know more about it. Maybe you don;t mind if I tell you briefly his history. My dad is 50. Ten years ago he started to have a high blood pressure. He took a lot of drugs but they didn;t help. A year ago he started to have a severe headaches and very high blood pressure (240-130, usually). But unfortunately this happened during the war ( I am from Kosovo) and he could not be treated since we were refugees. After coming home, in Kosova, he started treating, and after 2 month staying in hospital, his doctor found him a PHEOCHROMOCYTOMA above left kidney. It is 38mm with 42mm. But in Kosova there was never done such surgery, so he is now staying home, having attacks of high blood pressure and headache very often. The doctors suggested him to do somewhere abroad for surgery but it is too expensive and we cannot effort to pay it. What I am interested in, is what can we do to decrease his attacks and is there any humanitarian institution that can help us send him for a surgery? Thank you very much! Sincerely, Blerta

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Comments about the web site: Dear Members, The Pheochromocytoma Group is proud to announce that on Thursday, April 13, 2000, 9:00-10:00 PM EASTERN TIME, we will be hosting a chat with Graeme Eisenhofer, Ph.D. from NIH. Dr. Eisenhofer is a researcher at NIH who worked to develop the Plasma Metanephrine and Catecholamine test for pheochromocytoma. He has been head of the Unit on Preclinical Neurochemistry with the Clinical Neuroscience Branch of the National Institute of Neurological Disorders and Stroke since 1991. Dr. Eisenhofer is the Chief Operating Officer for the Foundation for Catecholamine Research, a philanthropic foundation for fostering research about catecholamine systems. Dr. Eisenhofer has been an advisor for our Pheochromocytoma Support Site since January 1999. Dr. Eisenhofer will take questions concerning the Plasma Metanephrine and Catecholamine test, as well as other testing available for pheo. Because he is not a medical doctor, we ask that he not be presented with medical questions. However, general questions about pheo research and testing are welcome. The first 45 minutes of the chat will consist of questions sent to us with Dr. Eisenhofer answering. The last 15 minutes of the chat will be open to your questions. We are asking that questions be sent ahead of time to the following email address: PheoGroup@aol.com These will be forwarded to Dr. Eisenhofer and he will try to answer as many as possible. PLEASE WATCH THIS BOARD FOR ANY CHANGES IN TIME OR DATE. Thank you, Debra Harlander Co-Founder Pheochromocytoma Support and Information

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Comments about the web site: Hello. The address link for the special chat schedule mentioned by Debra is at http://members.aol.com/ThreePeb/chat.html or Click Here

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Comments about the web site: Hi Laurie. If you didn't receive an email from me a few weeks back (a response to your question sometime ago) please let me know and I will try to send it again. Yes, there are other places where pheos can develop in the body, and you should definitely maintain a regular checkup regimen with your doctors. Can you tell me what the doctors are doing for you at this time? Thanks, Mary

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Comments about the web site: Hi, juz want to let everyone knows what a wonderful site this is. I was diagnosed with a pheo last Oct and had surgery couple of months later. The period of waiting for all the tests and finally the surgery was the most terrible times of my life. I drew tremenduous strength from this website, simply by reading everyone's experiences and realising how lucky I am. My urine tests and scans were all positive, which gave a fairly straightforward diagnosis. I was also fortunate to run into fantastic doctors. Dear Mary, Debra and all others who set up this website and have been keeping it going, I'd like to say a big 'THANK YOU'. Good luck to everyone.

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Comments about the web site: Dear Mr. Byanski: I am replying to your post on the message board, but I wanted to send you a quick email note too. There have been no reports of any adverse side effects from the radioisotope injection. I have had several using the same chemical, and it felt like a common IV solution and nothing more. The life of the chemical is extremely short in the human body, and has been specially designed to have no side effects. This question has been brought up before by other members, and doctors and researchers have indicated that there are no worries, and they know of no adverse problems from it. Sincerely, Mary Peebels

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Comments about the web site: Dear Duncan Moir: My email I sent has probably already reached you, but I wanted to respond on this message board also. Thank you for your kind words of support to us. We like to think of this group as one big "family" that understands and cares about each other. My name's Mary, webmaster here. Several other members and myself founded this group so that we could reach out to others dealing with the same problems as ourselves. The other founders, and "core group" of our membership are June at Jhux3238@aol.com, Debra is PheoGroup@aol.com, MaryK is Mklevesque@aol.com, Wes is Sycho62000@cs.com, and Lisa who not currently active in the group. Several others helped to form the group also, but they do not handle the day to day functions of correspondence and support, and they don't wish to have their names and emails revealed. However, if you visit the members' pages, you will read a good history of the group and what part each person has done to make it a support effort. Thanks, Mary

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Comments about the web site: Dear Crab: Thank you for your thoughtful words. It really means a lot to us to be appreciated, because our goal is to always be there for persons who are dealing with the same illnesses as ourselves. I am so glad you had your pheo removed. I understand about all the seemingly endless waiting. What an ordeal! It is good to know that this site helped you to cope and find some strength. You sound like a strong person to me, anyway! Thank you for your words of encouragement, and be sure to keep us updated. We are proud to have you in our membership. Sincerely, Mary

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Comments about the web site: Hello, my name is Maggie -- MaggieFuss@aol.com. I wrote about a week ago with my "wierd" symptoms. Since that time I have been into the cardiologist again -- they put me on Toprol XL to control my high blood pressure spikes -- Toprol XL is a beta blocker -- in his office I had an another "attack" --- spiking blood pressure even on the toprol xl -- pounding heart -- sweating -- I am sick with the fatigue,etc. He immediately ordered a 24 hour urine -- he has seen this before -- when I picked up my bottle from the lab, they said I did not have to exclude any drugs I am taking -- is this true -- now i am reading elsewhere that you must exclude some drugs including tylenol -- can anyone tell me if there are drugs and foods that should have been excluded during the 24-hour urine test? I am having several attacks a day now. Thank you. MaggieFuss@aol.com

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Comments about the web site: Has there been any attempt to post a listing of physicians that have expertise with pheochromocytomas as well as surgeons and anesthesiologists, perhaps on a by state basis. It seems many people who post on this site are struggling to find physicians who are knowledgeable and willing to really study the cases. I would certainly appreciate having a list of 'experts' in Calif.

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Comments about the web site: Hi. Where can I get a transcript of last night's chat with Dr. Eisenhofer? Sadly, I couldn't join you until about 9:45 and would love to read what I missed. Thanks!

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Comments about the web site: Trish: I think starting a list by state of doctors and facilities is a fantastic idea! There was a posting a while back discussing this matter on the chat room message board, however, it never materialized. I think it would be extremely helpful for all if we could get this compiled, and the sooner the better.....thanks for bringing up the subject again...Robbie

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Comments about the web site: Here is the link to the Pheochromocytoma Support Chat held on April 13, 2000. You may wish to share this with your family and medical professionals. Guest speaker was Dr. Graeme Eisenhofer of National Institutes of Health (NIH Bethesda, MD). The subject of the chat was Plasma Metanephrine testing for pheochromocytoma at NIH. Dr. Eisenhofer is one of the scientists in charge of the research being done on pheochromocytoma at NIH. PHEO SUPPORT CHATROOM TRANSCRIPT (APRIL 13, 2000) I don't have the correct Email for some who post, so if you didn't receive an Email notification or copy, please let me know? Thanks

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Comments about the web site: Hi Maggie and Gina. I sent emails, but just in case, please see the above link to the chat that was held on 4/13/2000. Maggie, thought you would like to know that the question you posted about medications and Tylenol is covered in more detail in that particular chat. Sincerely, Mary

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Comments about the web site: To Trish and Robbie - Wanted to let you know that for the past two months Debra, Dr. Eisenhofer, a group of other doctors, and myself have putting together a thorough and very selective list of good physicians. We are taking care to only place receptive doctors who are understanding and want to be helpful on this list. We also are doing paperwork and making phone calls to make sure that these doctors are informed, up to date on the latest findings and technology, and are willing to be supportive. When we have the list done (soon), I will put up links and pages. As we find new doctors who want to be on the list and be supportive, we will add their names, location, phone numbers, and such also. We started doing this several months back because we saw there was a great need for a list. Thanks for the input!

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Comments about the web site: Hi Blerta from Kosovo! Please get your email, because many members have written to you and more plan to write. We understand your need, and we greatly admire your courage and care shown for your father and family.

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Comments about the web site: How many double pheo's do you have registered? Do you know what the long term effects of cortisone therapy are? Is there anything I should be aware of in taking cortisone? I do not like taking Flourinef and have heard I can do some self adjusting with salt. Any experience with this? I enjoyed reading the recent transcript. I logged on too late, but will try to get there earlier the next time. Thank you, Berit

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Comments about the web site: Does anyone have any experience with the endocrine team at Mayo in Phoenix. If so, I would be interested in your comments. Thank you

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Comments about the web site: Had a great time in Italy, despite the fatigue. Got home yesterday and my doctor informed me that my second 48 hour urine test was again negative. Am off to Terrace tomorrow for another cat scan. Will let you know what transpires. Will print out the chat room - sorry I missed it. Do not understand what this is all about - I don't have high blood pressure - only extreme fatigue and these bloody surges of adrenaline. Aargh. It's really nice to have this site to come home to. Take care, all.

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Comments about the web site: I have been diagnosed with a pheo in my left adrenal. I have VHL and have had many other surgeries over the years. The pheo was detected by 24hr urine test and initially was told i would have an MIBG next to confirm. While attempting to change my appointment time, i found out from a radiologist that i was going to have an Octreoscan instead. From what i have been able to learn, an Octreoscan can detect tumors that contain somatostatin receptors such as carcinoids, islet cell tumors, small cell lung tumors, and neuroendocrine tumors. I don't know if it has been used for pheos or how sensitive it may be for detecting pheos. Am i wasting my time with this test or have i missed something?

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Comments about the web site: Hello.My name is Kathy.I live in upstate N.Y..I never heard the word Pheochromocytoma until I awoke from surgery 14 days ago. I am thrilled to find this site! I have so many questions. Back in Feb. I had a gallbladder attack.An ultrasound for that problem revealed a mass/tumor. The next step was a CT scan which confirmed a tumor that was either in the very top of my right kidney or my adrenal gland. Then I had a renal biopsy {no fun!}. The results from that were "inconclusive", "didn't get it". 3 doctors studied my tests and couldn't decide whether this thing was in my kidney or my adrenal gland. On April 12th I underwent open gallbladder removal and kidney exploration. I was fortunate enough to be operated on by a 2 man team- my surgeon and a urologist. I was told that the worst case scenario would be that I might wake up without a kidney. I still have my kidney, but they did remove my right adrenal gland. They tell me my blood pressure went sky high during surgery when they got near my tumor. I had been taking Atenelol for about 2 years for my high blood pressure. I no longer take any medication. I used to have occasional sudden pounding headaches with chest discomfort, usually when overtired and stressed. I used to have sweats, especially after showering. People used to say "Are you okay? Gee your face is red!" Sometimes when friends would hug me they would tell me how hot I felt. I have gained weight and have been tired for the last couple of years. I assumed it had something to do with my blood pressure medication. Now I have been recovering for 2 weeks and feel like I have a long way to go. I wonder what I'll feel like when I'm healed. Pheochromocytoma is the newest word in my vocabulary and I hope I don't learn too much the hard way. Thank you all for being out there to listen to me. I would love to hear from you. kbaia@hotmail.com

How I found your page: From a search engine
Comments about the web site: Hi, I have posted many times before and have never been disappointed. Thank you for helping me gain information about this disease. I have had both adrenals removed, the most recent in '99; I am having symptoms again, where can other tumors develop? I have heard along the sympathetic area? What does this mean exactly? I feel tired alot, sweating, heart palpitations, some small blood pressure elevations. My M.D. ordered the 24 hr., urine test. Thanks in advance for your help. Nancy

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Comments about the web site: To Nancy: My husband's original tumor was extra-adrenal, he has never had a problem with his adrenal glands. His pheo metasticized to bone, and he now has numerous bony lesions throughout his body. His spine is 'full' of tumors, the ribs, sternum, both femurs, pelvis, skull, humerus, etc. I don't think anyone can 'predict' where the disease can decide to 'plant' its seeds! Radiation has worked wonders, and he has received one round of MIBG therapy, which has also been a great help. Good luck to you.....Robbie

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Comments about the web site: Dear Berit: I've emailed you after your message, regarding the double pheo statistics. But I'm still awaiting information about the other questions about cortisone and the medication vs. salts.

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Comments about the web site: Dear Leslie: I am glad you had a nice trip to Italy. I'm sorry to hear that you are still having the surges of adrenaline and blood pressure. I noted that your most recent 24 hour urine test was negative. I am curious if your doctor is aware of the NIH plasma metanephrine testing? It is done through your doctor, with paperwork through the NIH, and here is the information link: NIH plasma metanephrine testing.

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Comments about the web site: Dear Nancy: Thank you for your kind words of support to everyone. I recall you've had both adrenals removed, and the second one was recently, in 1999. I am concerned that you are having symptoms once again, and I am wondering whether you have had the NIH plasma metanephrine test for pheochromocytoma? That test is the most up to date and accurate one available. Yes, about your second question. There are other places where these tumors can develop. They have been found in several places, including even the bladder. Regarding your question about 'sympathetic area', you mean the autonomic nervous system that contains chiefly adrenergic fibers? I realize that your M.D. ordered the 24 hr urine test. Have you the results back yet? There are other illnesses that can cause the symptoms you describe, so it might be best to have the NIH testing to give you an accurate answer, and hopefully some peace of mind.

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Comments about the web site: Dear Kathie: You are a true survivor! I admire your courage. Thank you for your entries, and we welcome you to our membership. Please post all you want and let us know how you are doing. Also, with your experience, you can be of much help to others who post to this board. Sincerely, Mary Peebels

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Comments about the web site: Dear Rick: You are really dealing with some complex medical problems. Since you have been diagnosed with a pheo in your left adrenal, and you have VHL and have had numerous surgeries over the years, I think the Octreoscan might be in your best interests. I suppose the timing of the two tests (MIBG and Octreoscan) had to be considered by the radiologist, in making the decision of which to do first. Your information is correct, that the Ostreoscan can detect tumors that contain somatostatin receptors such as carcinoids, islet cell tumors, small cell lung tumors, and neuroendocrine tumors. I will contact others in our group who have had the Octreoscan for pheos and see their experience on how sensitive it may be for detecting pheos. I'll try to get back with this information as soon as possible. Please feel free to post more at this board and the blackboard, because often there are other readers who can help, and are dealing with similar health problems. Sincerely, Mary

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Comments about the web site:

How I found your page: From a search engine
Comments about the web site: I have Addisons disease, and I was wondering if you can have Pheo also? Or is that impossible? Well I am sweating constantly, headaches,weird feeling all the time and my blood pressure has been going up lately! I am so tired of being sick! I cant even walk around at school(I am 18) I hate it so much, I am never better

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Comments about the web site: Mary - thanks for the e-mail. I printed out the two pages for the NIH blood test, but am wondering about me being a Canadian. Would NIH accept a Canadian blood sample? Or is there some place in Canada that is doing the same tests? I e-mailed Debra with these same questions, so in my dithery state, am merely repeating myself! Sorry to waste time and space. But thanks so much for keeping in touch. Leslie

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Comments about the web site: Does anybody know of a national directory of physicians who know about or treat pheochromocytoma?

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Comments about the web site: Mary, Debra and all - thanks for the NIH info. My doc and I are simply going to wait for the c-scan results before going on to something else. But what I don't understand (well, many thing I don't understand!) about this pheo/mens business is the miasma of fatigue that surrounds me. I feel like Pigpen with his ever-present cloud of dust around him - I sometimes think people must be able to see me walking around with this fuzzy fatigue fog whoosing around me. And yet despite the fatigue, I still manage to lurch and stumble doing my usual marathon walks and all the other daily chores. Does anyone else wake up exhausted? Is anyone else crabby and irritable and snappish and downright cranky? Sigh. Almost hope the c-scan does show a pheo - at least there'd be a positive reason for feeling so wonky. I guess all we can do is carry on and hope that one day (soon!) we'll all wake up one day and feel really good. Buonanotte to all.

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Comments about the web site: Dear Patrick: We are currently working on a list of recommended physicians. It isn't completed, because of permissions needed and other legal matters that need to be smoothed out. In the meantime, I will try to get some names for you and send you an email with them soon as I can.

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Comments about the web site: Dear Jackie: I am going to send you a personal email, to discuss the details of pheo and what our group can do to help you. I am sorry to hear that you have Addisons disease. You are so young, and I admire your courage. I know each day and night must be quite a challenge. Just being 18 and dealing with school is enough! It is good to hear from you. Please post all you want to our boards!

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Comments about the web site: Hello.Thank you for the messages of support.It's so good to know there are people out there who understand what I'm going through. It's been 23 days since my surgery. I'm coming along well I guess.I've never been so down physically, but it's getting better. I know from now on I'll be more helpful and sympathetic to others who are having medical problems. I just plain never knew pain and suffering until now. The good news is my tumor was benign. I don't have a measurement but my urologist indicated the size of a golfball [ which is much larger than the adrenal gland itself ]. I wonder how long it took to grow to that size. One thing that bothers me is I'm not having my blood pressure monitored. I have a Drs. appointment on the 18th. I guess I'll find out then. Everyone take of yourselves and remember FRIENDS ARE WORTH MORE THAN ANYTHING.

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Comments about the web site: I am now 5 weeks post-op after having my left adrenal gland and pheo removed. To everyone who has recently undergone this operation, I would tell you that there was a tremendous improvement in both my mental and physical state after about 3 1/2 to 4 weeks post-op. I check this message board often and my thoughts and prayers are with everyone who is undergoing surgery or dealing with pheos. Good luck and best wishes to everyone.

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Comments about the web site: Dear Friends: I am very sick, and this time it is serious. I might be gone for just a few days, or it might be more. I never know once I have to have scans and other treatments. It is the hiatal hernia again, not the cancer. Al (husband) or Alan (son) might have to take care of my mail in the meantime. I just want all of you to know that you are very special to me, and that I am looking forward to being back here soon. Sincerely, Mary

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Comments about the web site: I am very glad to see this web site. My husband (33 years old) has metastatic pheo that is in his bones. He has been fighting this for a VERY long time (1st one when he was 15 then it turned metastatic in 1996). I am interested in talking with others who have experiences with metastic and what treatment options they have had. Thanks.

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Comments about the web site: Hear from friend. How long should it take to see doctor at your country? Is immigrants welcome?

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Comments about the web site: HI MY NAME IS NATHAN I WAS WONDERING IF SOMEONE COULD HELP ME OUT BY JUST GIVING ME A LIST OF SYMTOMS THAT THEY HAD WITH THERE PHEOCROMOCYTOMA I REALLY NEED TO KNOW THIS PLEASE IF ANYONE CAN HELP (e:ThreePeb POP network set on auto-post)

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Comments about the web site: Hi again, I just completed the 24 hour urinalysis, it was normal. I am having heart palpitations, feeling very warm, sort of anxious and hypersensitive to heat actually. AS you know, from previous messages, I have had 2 previous pheo's on ea adrenal, both were subsequently removed. I need to know how to go about getting the plasma catecholamine test from the NIH. Thanks, NB

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Comments about the web site: Dear Friends, heard about this from some other Kosovo connections. This person needs loads from Belgium and Holland to Kosovo. Need 1000 tons frozen meat. Can you help?

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Comments about the web site: I not have email to send or see. Debra will help with da finanzial for come to NIH medico? No will email open. brunicas@freemail.it brunicas@freemail.italy

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Comments about the web site: So very happy to have found this site. Was diagnosed in Dec 88 with medullary carcinoma. Dad had it in Sept of 88, thus all family members took a calcitonin test. I had my thyroid, parts of my lympnodes and three tumors removed. In the next three years two out of three siblings had thyroids and/or parathyroids removed in precancerous conditions. After Dad died in 1994 of the cancer (it had spread to his liver) we had DNA testing done for the mutation of the RET oncogene. At that time I found out that both of my children carried it. In July of 97 both children had their thyroids removed at Boston Children's. My son was 5 and my daughter was 4. My son's pathology tests came back positive of cancer cells. Now almost 4 years later, both of the are being tested for pheochromocytoma. My sons first test was out to lunch and he is having a CAT scan done this week. Now I am being to wonder about all of the symptoms I have been experiencing over the last 5/6 years that the doctor told me was panic attacks. Heart beating fast, shaking hands, sweats, pounding head (like a buildup of pressure). Thought that this was over a long time ago....

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Comments about the web site: Thank you all who e-mailed me with a response to my original posting. Mary, my thoughts and prayers are with you and hope your recovery is quick and complete. To update my situation,the Octreoscan results were negative but we know i have a pheo as we have been watching the mass for about 4 years now. My doctor has confered with others @ Dartmouth Hitchcock Medical Center (Lebanon, NH) and they feel we should remove the pheo anyways given my VHL history and the fact that the Pheo has grown slightly since the last scan. i have asked if the surgeon can do adrenal sparing laproscopy and the doctor seemed to think it was not necessary to worry about that because i have another adrenal gland that will work fine. I explained to him the importance (to me) of doing everything possible to spare my adrenal gland (if possible). At this point i am awaiting word from the doctor on the next step. I don't believe the doctors understand yet that they are dealing with someone that maintains full decision making authority on my case. I think most doctors are used to telling the patient what they want without being challenged, or at the least, questioned in such an informative way. I'm not sure if i am asking anything at this point but i do have a decision to make: do i leave the pheo? Laproscopy is enticing over open surgery but i will probably lose my adrenal. I certainly am not looking forward to the mentally draining experience of open surgery again. Should i ask for a confirmation initial test again? Can i hold off surgery until i can afford to be away from work for awhile (this winter)? Thank you for the space to place my thoughts.

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Comments about the web site: Hello! I have contacted Mary only once in the past but she really made my day when she tried to help me solve this...I got very emotional when I read what she has gone through ,and now I read she is very ill...I just want to wish her the best and that she jumps one more pebble...She seems so strong, and through her difficulties so eager to help others....what a gift! Get well soon.Rosa ( the girl from Spain)

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Comments about the web site: My heart goes out to Mary. We're all pulling for you. Just thought I post the latest - my c-scan showed "a 1 cm soft tissue density arising from the left adrenal gland, with the left adrenal gland bulky in appearance", plus a questionable number of adenoma. Am doing another 24 hour urine test tomorrow, as well as some blood work, and my gp is arranging an appointment for me with an endo in Vancouver. I guess what's confusing my gp is that I don't have high blood pressure, nor headaches, nor am I pale, nor do I have tremors. I do have either tremendous surges of adrenaline or a constant flow of adrenaline, sometimes accompanied by increased heart rate and rapid breathing, but not always; and I'm exhausted. I take 1 mg. of ativan once, sometimes twice a day just to get some relief from the bloody adrenaline. Also taking 25 mg. Zoloft for depression - pretty low dose which helps, but am wondering if that little bit extra seratonin could be causing excess adrenaline? Except all this started long before the Zoloft. Maybe I am just a 58 year old depressive with tendencies towards extreme anxiety!!! Goodnight to all.

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Comments about the web site: To Brandi Kreis: My 51 yr. old husband also has pheo, which has metastacized to bone. He has numerous bony lesions throughout his body. The disease has been quite aggressive for the past 16 months now. His 'original' tumor was a soft-tissue one which was surgically removed a year ago. As for other treatment, he has gone through radiation on 13 spots. The radiation seems to be the best help, i.e. it relieves pain and shrinks the tumors but does not treat the disease as a whole. He has also had one round of MIBG therapy treatment done at Duke University Medical Center. This was done as an over-all disease 'attacking' treatment. He did improve some. One treatment is not enough, and Duke only does this therapy at 6 month intervals. We are approaching that time now and hoping to be able to go for another round. Over the past 4 - 5 weeks the disease has been escalating once again. What treatments has your husband received?...and where does he go for treatment? We have found it very frustrating to find doctors in our area who have any experience/knowledge of pheo. And so have been doing research on our own. This website has been a great source of information for us....Robbie

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Comments about the web site: I am wondering if your group also provides financial arrangements for persons in the USA? I noticed much help for foreign countries, but do you have set aside funds for people here? If so, please send me the link or post it on the board. I think that would be of much help to those in need in this country or this side of the world. Not all of us have access to the greatest care either, although I know we don't have to live in the conditions of some foreign countries. It's still no bed of roses for most of us here, and that is fact.

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Comments about the web site: I thought I'd (finally) post a message; I've read so many of yours, and you all seem so supportive and helpful to each other. I've hesitated before now because I don't have a definitive diagnosis of Pheochromocytoma, but at the rate things are going I'm not sure I'll ever get taken care of! So. Mary has sent a very helpful e-mail, but I didn't want to bother her, so here I am. A little background on me....my paternal aunt and grandmother both died from Pheochromocytoma back in the 1960's, but for some reason the only person who ever filed that away was my mother. In any case, I'd carried that information around with me my whole life, although I didn't even have a clue what it was. However, about a year ago we got our first computer and at the same time I found out that one of my young paternal cousins was quite ill, I researched Pheo and realized that not only was it what my family was describing about my cousin, but that it's symptoms had been a part of my life since I was about 19 (I'm 32 now). No one listened, and so I dropped it. It wasn't until about a month ago when I went to an endocrinologist that I brought it up again. I didn't even realize that my headaches were due to my high blood pressure that I didn't know I had!! Sure enough, the next day my father finally confirmed what I had suspected all along, that my cousin had had tennis ball size Pheos removed from all along his mesenteric artery to his adrenal! The family was in shock, because when my cousins mother had asked for info a year ago from those who had been around for my aunt's and grandmother's illnesses in the '60's, she had been told that though they had rare tumors they didn't think it was the same thing! I was the only one who had researched the information from autopsy reports and knew for sure, but I had also been told that they were all unrelated. UGH. Now they are all looking into my cousin's older brother who has been having the same symptoms I have been having (no doctors seemed interested for a year before they realized a family history...go figure)but they are all in the same area, and I am feeling all alone. I've done one 24-hour urine test, but the only thing elevated was dopamine, and my doctor doesn't think the levels were high enough to produce the symptoms I have. So, I picked up another jug today to do another one during an "attack". So here's my symptoms....sudden pounding headaches, dizziness, aching in my left, upper abdomen, an unexplainable pain on the right front side(inside)of my neck that radiates up to my jaw, EXTREME exhaustion, episodes of numbness in my hands and face that leave me almost crippled looking, recent episodes of shooting pain beginning from my groin and shooting down my legs, and horrendous weight problems(ie, I am 92lbs on a good day, but if I don't really work at putting the food in, I lose weight at the drop of a hat....some people think it sounds like a good problem....try living like this!!)and for the past 3 years I have had diahrea (colonoscopy last week was fine...yeah folks, I know. If it hadn't been fine then I'd have something else to worry about!)There are probably more, but I'm too tired right now to think about it. I've started keeping a symptoms journal including my predictions for what they might eventually find. I just feel as though the doctor here is not seeing things the same way my family back east's doctors are; there certainly isn't the same sense of urgency, and frankly, I feel like the people in his office are inept. The first girl I saw today didn't even know what a 24-hour urine test was and kept trying to give me a small plastic urine cup you might get from the obstetrician! Then the next girl, who did bring the correct "jug", kept insisting that I start the test first thing in the morning even though the doctor had said I should start when I had an "attack". Both of them said, "It don't matter what you eat, nothing interferes with the results." But that isn't what I've read. If anyone knows, I'd love to hear. Also, I am on Prinivil for my BP; I know it is an ACE Inhibitor (although I don't know what that means), but I don't know if it will harm the results either, and I'm taking every bit of info from my Doc's office with a grain of salt. Also, I am in St. Louis....if anyone knows who I should be seeing here, I'd love it. I know that the way I feel isn't normal, and I am scared by my family's history. I got really excited at 27 when I had finally outlived my aunt, even though I didn't know what Pheochromocytoma was then. Now I know that even then I had been exhibiting her exact symptoms for over 8 years! Help. I am at such a loss, because I feel like I've already waited 13 years too long to get checked out, and now the people checking me out don't seem to know as much as I do! I hope this finds you all hanging in there and doing your best. Your stories and posts have given me such hope and strength. You are all in my prayers.

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Comments about the web site: Hi. I work for a doctor who is sooo conservative. I have battled with the symptoms I am reading here for years (about 6). With no other explanation it was decided I was having panic attacks. However, 2 weeks ago I suffered bradycardia with second degree heart block, ending up with a pacemaker ( I am only 45). Continuing to have episodes ( elevated BP, severe headache, nausea, chest and upper back pain) a neurologist suggested the 24 hr catec urine test. I had it, and the lab called stating cancelled due to substance interference. I am on propranolol, which has helped the symptoms. The doctor said to repeat the test I will have to go off the propranolol . I do not want to go off it, my BP is down to 140-150/90-96, the headaches are less severe. I am considering the HPLC meas. of plasma free meta& normeta. Someone else's opinion would certainly help. Thank you...Patty

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Comments about the web site: Hi, I haven't posted in quite a while. In January I had my right adrenal gland removed, along with the pheo. I am going to be taking the 24 hour urine test soon, and am curious about what drugs need to be stopped prior to testing. I take synthroid, Ativan, St. John's Wort, Vit. D, and magnesium. Am mostly wondering about the Ativan. Any help would be appreciated. Tina

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Comments about the web site: Dear Margeau: I am glad that my email helped you. I have been a bit sick myself, but I am out of the hospital, and hoping to feel better soon.
I am still concerned about the fact that familial pheo appears to be a condition that has been overlooked by past physicians. When your cousin had had tennis ball size pheos removed from all along his mesenteric artery to his adrenal, and your aunt and grandmother both died of pheo, you definitely need to have your health situation investigated. Especially with your symptoms. I am hoping you don't have it, but not knowing is a terribly difficult situation. I want to remind you that our core group does not place much faith in the urine tests. I lost relatives due to false negative urine tests, so I am opposed to the urine tests even though they have worked to diagnose some members. We emphasize the NIH blood tests since they are much more modern and have a far superior accuracy rate. I am also hoping that you might look into having DNA testing done since familial pheo can be tested this way. Let me know if you need information or links regarding these subjects. Thanks, Mary

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Comments about the web site: To Rosa, Leslie, Rick, Wes, Lisa, Debra, June, Don, Casey, Zeta, Rose, Nancy, Vinnie, Sheila, Kathy, Cindy, Patrick, Alex, Vickie, Merja, Femme, and everyone else who sent me wonderfully kind thoughts and well wishes: THANK YOU! Sincerely, Mary

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Comments about the web site: To Nathan, Nancy, Tia, Tina, Kathy, Brandy and others who have posted questions, please see your email. I decided to write in more detail that I could post on a message here. Thanks. Sincerely, Mary

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Comments about the web site: I would like to respond to everyone who is facing surgery for pheo. My right adrenal and baseball-sized pheo were removed last November. One of my biggest fears, was not knowing what to expect in the hospital or afterwards....so here goes: I was admitted one day in advance where they started an IV to hydrate me fully. I was given a light sedative early the next morning and taken to surgery (still awake). Surgeon chatted for a bit and reassured me that we had the best anesthesiologist in town (very important part of the surgery due to the two times that the pheo will "explode" with adrenalin during removal). I awoke in recovery---very thirsty and in quite a bit of pain--mostly my back hurt because of position they put me in for the 5 hour surgery. After about 30 minutes, they gave me some ice chips (not nearly enough) and about 30 minutes after that, they took me back to my room. I was put on an IV of morphine with the usual push button which I could self-dose every ten minutes. They finally gave me some water about 2 hours after that (guess they want to avoid any nausea due to anesthetics). The morphine was not quite enough so I also got some Percoset (LOVE THAT STUFF!!!!!). Was on a liquid diet for the next 18-24 hours, then I could eat anything I wanted. Was in hospital for total of 5 days (1 prep day, 1 surgery, 3 recovery). Went back to work exactly 10 days after surgery. First few days at home were a little painful--hard to walk standing up straight, and coughing was a killer, but it got easier by the hour. When I went back to work, had to walk slowly and couldn't stand for very long (I'm a teacher) and worked only half days for 3 days. Two weeks after surgery, I was back fulltime, taking only Tylenol occasionally and eating like a horse. It's been 6 months---have started an exercise program and feel great---better than I have ever felt since about the age of 5!! Only suffer a few "pangs" from the area where the tumor/adrenal was removed--could be "phantom organ" pain...I hope, I hope. Knowing the danger of this disease, I feel very fortunate to have had such great talented supportive medical people--endocrine doc, surgeon, anesthesiologist. The pain I went through was nothing compared to the 40 years of crazy suffering before that. Don't give up---keep looking for a good doctor and make sure you have a good anesthesiologist--well worth it all. Barbara

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Comments about the web site: Barbara: I'm probably light years away from surgery, but was delighted to read your description. Especially that you're feeling so good. Oh, to feel good again! But I'm curious as to what kind of surgery you had - open or laproscopic? Whatever, thank you for the info - gives us all hope.

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Comments about the web site: Sorry I forgot to add more about the surgery. My surgery was laproscopic. Four holes--three small (one inch) and one larger one (about 3 inches). Scars are even fading nicely so I feel lucky. I actually found a surgeon who had watched two and soloed on two pheo-adrenalectomies. Phew..lucky again. Big hugs to all facing their surgery...

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Comments about the web site: Leslie: I didn't have headaches, tremors, and I didn't have weight loss. I had actually gained a whole bunch of weight. Your symptoms sound like mine. Hang in there and get the darn thing outa there.

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Comments about the web site: Hello everyone...just wanted to post to let everyone know that my email address has changed. Please send all email, including requests for the plasma metanephrine test to: angldove@twcny.rr.com Thanks so much, Debra

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Comments about the web site: I've been in and out of the pheo support group site for almost 2 months and don't know why it's taken me so long to read the notice boards! It's nearly 8 weeks since I had a large pheo (16x12x7cm) removed from my right adrenal gland at King's College Hospital in London, UK, after 4 years of on/off symptoms which reached crisis point in January 2000. Symptoms disappeared with the pheo thank goodness, but feel that maybe the hypertension has killed a lot of brain cells! Would be interested to hear if anyone else has experienced memory problems and continued irritability post-pheo. Still awaiting histology and blood screening test results. Anyone else had what I think was called a pentagastrin test? (bad memory you see!) To Mary, glad to hear you're back home. Here's hoping things are improving for you again. All my best wishes. If anyone wants info on UK treatment or anything else, I would be pleased to hear from you.

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Comments about the web site: I have all the classic symptoms of a pheno, recently dx. with high blood pressure after treating the extreme anxiety with benzos. Beta blockers are much better. I have a question, I had the 24 hour urine test that was negative however I turned my sample on a Thursday, the test was done the following thursday. Could there have been a chance of error do to the week long time delay? Also, I have been on the beta blockers for nearly 5 months now and suddenly I am experiencing severe anxiety again and my blood pressure is up also, can anyone identify? please write, my doctor thinks it is all in my head.

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Comments about the web site: I wrote about a month ago when they were running the first 24 hour urine -- they ran it with no dietary or medication restrictions and it was negative -- I am scheduled for another with no restrictions. Today I found out at least one of the meds I am on (methyldopa) will interfere with the test results. The cardiologist I was working with starting 3/1/00 abruptly sold his practice and retired, selling me also to the cardiologist who took over his practice and is not nearly as knowledgeable as the former who retired. It began as high blood pressure spikes, sweating, tremors, pounding heart that awakens me at night -- sometimes all pulses in my body pound along with my heart -- I am on multiple meds other than my b/p meds -- and the following blood pressure medications -- toprol xl 100 once a day; clonidine 0.4 daily; methyldopa 500 mg 3 x a day; and hydralazine 10 mg x 2 a day. My blood pressure this week despite the meds was 238+/110+ in my gynecologist's office (who is also a reproductive endocrinologist -- he immediately called my cardiologist and told him I needed to be hospitalized. Instead, my cardiologist had me come to his office and he Rx'd a diuretic that I had a known allergy to -- insisted it was not a thiazide diuretic. I have lost all confidence in this new cardiologist and have begged my gynecologist to refer me to another doctor (I am not in an HMO but fear "physician politics" may prevent this as he did not call me back today. I feel like I am a time bomb waiting to explode -- How did you all get help? Also I have an internal med doctor who is useless. Any suggestions would be appreciated -- I do have a CT scan of abdomen and pelvis scheduled 6/3/00 but fear no radiologist here will be knowledgeable to read it read it. Suggestions please --MaggieFuss@aol.com. Please write. Thank you.