Guest guest Posted August 1, 2009 Report Share Posted August 1, 2009 , even though you probably don't have PA, I hope you stay with us and keep us updated. I liked reading all your information. Val From: hyperaldosteronism [mailto:hyperaldosteronism ] On Behalf Of deafiegb Yes, they told me at the time it was one of the most unusual looking tumor they had seen. Dr Kem may have done some testing on me back in 1994 (I had forgotten about that) and I will be glad to give him permission to release all of my records (assuming they still have them) including the pictures you mentioned. You are welcome to contact him and ask him what they have in my file and I'll sign a release giving them permission to give you full access to my records. You may send all of this information (including what I wrote below) to whoever you wish to send it to. By the way, my surgery was not done at OU by Dr Kem, so my urologist might have this information. But he and Dr. Kem were in close communications on this so maybe they both have this information. I will check and see. You asked if my BP and K symptoms disappeared after surgery. That's just the thing, I wasn't having any symptoms of HBP or anything else like that at the time. I went to the doctor because I was having abdominal and back pain on my left side (opposite of the adrenal gland tumor). The doctor got my x-rays from the hospital and as he was going through them he spotted the tumor. From what I've been told, and I'm sure you know this, many time this is how an adrenal gland tumor is discovered. The hospital totally missed it and no one knew about it until this doctor (retired now) found it on the x-ray. You asked, " Have you ever been tested for GRA? Is there a family Hx of HTN and low K? Have you ever taken prednisone for a few weeks? If so what happened to your BP and K? " To my knowledge the answer is no to all of your questions. I've had relatively stable (not normal) blood pressure up until three months ago or so. This all came on all of the sudden. True, I did have higher blood pressure than normal 135-145/80-90 for the past couple of years but it was always stable, never erratic as it is now. I am overweight so that's what I (and the doctor) contributed my HBP to. I've lost 35lbs in the past three months. I now weigh 245lbs am 5'10 and I'm going to be 56 yrs old next month. By the way, my recent K tests and sodium were normal again. You asked why they decided to operate on the right side. Because I didn't have an adrenal gland tumor on the left side until recently. And get this, this one was also discovered when my wife was going through my records and noticed that it was mentioned on the hospital report from one year ago when I went into the ER for left side abdominal pain (had this for years and no one to this day knows why). After we discovered the tumor I went to my urologist (same one who removed the right side tumor) and he said it was 6mm and nothing to worry about. Of course, I wasn't satisfied with that answer and that's when I started doing some research on this. The reason my wife was going through all my medical records is because three months ago or so when I began having this problem with HBP spiking and acting erractically she was trying to see if there was something that might explain why this was happening. When I found out I had this tumor I got on the internet and learned that this tumor could possibly be the cause of this. That's also how I found you and this group. From all of the tests that I've had from OU medical center from the Endo, it appears that this tumor is not what is causing the problem based on the urine and blood tests I've had. As I've already told you my Aldo was 17.5 and renin was 5.12. Now that the Endo (from OU Medical Center) diagnosed me as having Renal Parenchymal Disease she feels pretty confident that this is what's causing my HBP. She told me I need to see a Nephrologist and I have an appointment to see him but can't get into his office until the end of September. I'm thinking of calling OU Medical Center and possibly seeing someone there. My Endo at OU said they are all very busy and I probably can't get in to see any of their Nephrologists any sooner than the one I have an appt with. The Nephrologist I have an appt with is supposedly one of the best in OKC but if Dr. Kem knows of someone at OU I would consider going there. Yesterday I started on 5 mg of Amlodipine and 2.5 mg of Enalapril. I was on 5 mg Enalapril only but since finding out that I have this renal artery disease the doctor felt that this would be a better fit for me. Unfortunately, for the past few days in the late afternoon or early evening my blood pressure spikes at about 150-160/90-100. I put a call into the doctor yesterday to see what I should do but he already left his office so I was unable to get any advice from him. I hate it when the BP spikes like that and would like to know if I need to make adjustments on the BP medicine. Anyway, you asked about the surgical report from 1994. Yes, I have that here with me and would be glad to fax it to you if you'd like. Email me your fax number and I will get that faxed to you once I get it. Sorry for the long post but you seem interested in this information so I wanted to give this to you. Hope you have a good weekend. > > > Dr. Grim, > > > > You were wanting some pathology info on my right adrenal tumor that > > was removed in 1994. I got the records from my urologist today. > > You'll never guess who was the first doctor I saw about this. It > > was Dr. Kem (who you recently referred me to) at OU Medical Center. > > At the time he was really wanting to do this surgery because this > > tumor is so rare, but I was reluctant to have it done at the > > University and have a bunch of students " practice " on me. He > > referred me to the surgeon who took the whole adrenal gland out. I > > did not even remember I met Dr. Kem until I read through the > > reports today. Thought you'd be interested in this... > > > > > > > > PATIENT: GARY B > > SURGICAL PATHOLOGY REPORT > > 12/28/94 > > > > SPECIMEN/TISSUE: Adrenal gland > > > > GROSS DESCRIPTION: Received is a 82 gram adrenal gland, measuring > > 7.1x6 . 3x4. 2cm. The gland is completely excised and has > > replacement by a yellow tan neoplasm having dimensions of 6.7x6 . > > 0x4. 0cm. The cut surface is orange-yellow with interspersed > > hemorrhage and central variegated gray tan sclerosis near one pole. > > Portions of the neoplasm have a thin rim of adipose tissue. There > > is no normal adrenal gland. No lymph nodes are identified. RSS-6. JS > > > > MICROSCOPIC DESCRIPTION: The adrenal gland is nearly completely > > replaced by a histologically benign proliferation recapitulating > > zona glomerulosa. Tumor exists in crowded alveolar arrangements and > > has uniform to mildly pleomorphic nuclei with binucleate forms > > occasionally identified. Cytoplasm is moderate to prominent with > > fine granulation. There is no mitotic activity, nor lymphovascular > > invasion. Portions of the specimen have trabeculating variably > > sized hyalinized fibrotic bands with interspersed unremarkable > > vessels. There are broad areas of hemorrhage. One section has neo- > > ossification with surrounding scattered elements suggestive of > > hematopoiesis. > > > > Clinicopathologic correlation conducted with Dr. Dan ******** on > > 12/29/94. The specimen has histologic benignity, but the gland is > > within an intermediate category for clinical recurrence (weight > > between 50 an 100 grams, size greater than 5cm). Histological > > features take precedence over organ size and weight in ascertaining > > malignant behavior. Continued clinical follow-up is suggested as > > indicated. > > > > REFERENCES: D.R. King and E.E. Lack, Cancer, Volume 44, pages > > 239-244, 1979. > > L.J. Medeiros and L.M. Weiss, American Journal of Clinical > > Pathology, Volume 97, pages 73-83, 1992. > > > > DIAGNOSIS: Adrenal gland, right (adrenalectomy). Adrenal cortical > > neoplasm (see above). > > > > > > > > Clarence Grim BS, MS, MD > > Clinical Professor of Medicine > Medical College of Wisconsin > Board Certified Hypertension Specialist > > Specializing in Difficult to control high blood pressure. > > Training you and your health care team to get to goal. > > ALL advice given by me MUST be discussed with your heath care team. > They know you best. Don't gamble with your like. > > We encourage members of your health care team to join our efforts to > learn what news and old in the BP business. > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 2, 2009 Report Share Posted August 2, 2009 , today I started three weeks of doxycycline to see if my IgeneX tests will come more positive. I am equivocal/positive right now and they think that if I have Lyme, three weeks of doxy will make the Western Blot bands bloom. I've been trying for several months to do this and every time I think I'm ready, something else comes up. First, I had an old root canal cleaned and re-done to see if that was causing some of my symptoms. It wasn't. Then, I just had to get the whole bottom end checked out including a biopsy but everything seems fine. The symptoms are coming from something else. Lyme is a terrible thing to hope for but at least I'd have some hope of someday feeling better. My brother is in the hospital at Cleveland Clinic. He is #1 on the lung transplant list. There is something wonderful about a country that will allow a poor man like my brother to have such world-class care. He could have surgery at any moment. , you're in my prayers. I hope you get attention soon. Val From: hyperaldosteronism [mailto:hyperaldosteronism ] On Behalf Of deafiegb Val, thanks for encouraging me to stay around. You are right, it does appear that I don't have PA. I'm hoping for a good outcome but at this point not feeling real positive about it. I hope I'm wrong. Time will tell. I have been encouraged here by several of you and I appreciate it. I especially appreciate that Dr. Grim has been so helpful and got me connected to the right people at OU Medical Center to help me get the diagnosis in the first place. Thanks again for your concern and encouragement. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 8, 2009 Report Share Posted August 8, 2009 , I'm sorry you've been sick. Does anyone know what's causing your symptoms? Have you gotten medical attention? I was doing really well for about six days on the doxy. Then today, all hell broke loose. I was out in the sun about an hour then got weak, anxiety; inner tremor (brittle), sweats & chills; back ache, knee pain worse, neck/shoulder pain, irritable bladder, eye twitching. I even felt the need to wrap myself in a blanket for a while to get warm. I took extra potassium and am better tonight. I have no idea what's going on. Val From: hyperaldosteronism [mailto:hyperaldosteronism ] On Behalf Of deafiegb Sent: Saturday, August 08, 2009 7:16 AM hyperaldosteronism Subject: Re: ATT: DR GRIM Val, Sorry for not responding sooner. It's been a rough few days for me and I've just not been able to do much on the internet lately. Been nauseated, weak and just feeling plain lousy. Have hardly been able to eat anything either. Anyway, I'm so glad to know that you have now started doxy for the purpose of your IgeneX tests. That's a very good way to get the bands to " bloom " as you say. That's what many LLMD's do and it seems to be effective. How are you feeling since you started doxy? You are right, Lyme is a terrible thing to have, but if you treat it early it can be overcome with a good treatment plan. Mine was not diagnosed until about ten years of suffering with it. Most people need one year or more of antibiotics to get well, combined with probiotics, vitamins, herbs, etc. If you have a knowledgeable LLMD treating you everything will work out good for you. There is a lot of good information on lyme on the internet and a popular forum called lymenet where you can get good support and answers to many of your questions. You probably already know about lymenet but just wanted to mention it in case you haven't. I'm sorry to hear your brother is in the hospital and needing a lung transplant, but that is wonderful that he is number one on the transplant list. I will be praying the he get that lung very soon! Praying all goes well for you too, Val. Keep me posted here or you can email me, whichever you prefer. > > , today I started three weeks of doxycycline to see if my IgeneX tests > will come more positive. I am equivocal/positive right now and they think > that if I have Lyme, three weeks of doxy will make the Western Blot bands > bloom. I've been trying for several months to do this and every time I > think I'm ready, something else comes up. First, I had an old root canal > cleaned and re-done to see if that was causing some of my symptoms. It > wasn't. Then, I just had to get the whole bottom end checked out including > a biopsy but everything seems fine. The symptoms are coming from something > else. Lyme is a terrible thing to hope for but at least I'd have some hope > of someday feeling better. > > My brother is in the hospital at Cleveland Clinic. He is #1 on the lung > transplant list. There is something wonderful about a country that will > allow a poor man like my brother to have such world-class care. He could > have surgery at any moment. > > , you're in my prayers. I hope you get attention soon. > > Val > > From: hyperaldosteronism > [mailto:hyperaldosteronism ] On Behalf Of deafiegb > > > Val, thanks for encouraging me to stay around. You are right, it does appear > that I don't have PA. I'm hoping for a good outcome but at this point not > feeling real positive about it. I hope I'm wrong. Time will tell. > > I have been encouraged here by several of you and I appreciate it. I > especially appreciate that Dr. Grim has been so helpful and got me connected > to the right people at OU Medical Center to help me get the diagnosis in the > first place. Thanks again for your concern and encouragement. > Quote Link to comment Share on other sites More sharing options...
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