Guest guest Posted February 18, 2011 Report Share Posted February 18, 2011 Tell us how your BP has done on spiro and DASHing?CE Grim MDHere is a draft of my story to date. Comments and suggestions will be greatly appreciated. I didn't know if you wanted it as a seperate file so you are getting it both ways!- - - - - - - - - - - - - - - - - - - - - - - - - - - - - - - - - - - - - - - - - - - - - - - - - - - - - 2011/02/17 - By way of introduction, I am , a 64 year old morbidly obese individual living in Graniteville, VT and currently being treated at the Veteran’s Hospital in White River Jct., VT. I will be meeting with a surgeon at DHMHospital next Tuesday to try and figure out if there is anyone qualified to treat Conn’s Disease. I am in a unique position because I am able to get all my treatments thru the VA, I have private insurance thru my previous employer and I am on Medicare Part A due to disability so I will be looking for the best place to find treatment.This is not intended to be a full autobiography at this time but I will hit the highlights and plan to backfill later. (I need to introduce myself so I can start reaping some of the benefits of this group and Dr. Grim.) I feel like I was on a treadmill for 63 ½ years and then the train left the station and we are now traveling at Warp Speed!In addition to self diagnosed Conn’s Syndrome I am Morbidly Obese (315 lbs.), have Obstructive Sleep Apnea, am on Oxygen full time, am Diabetic Type II ,and have a continuous pain in my Right Flank area that radiates to my Right Testicle. (Does anyone want to guess on which side the Adrenal Adenoma is?)I have had high blood pressure for as long as I can remember. I worked in Computer Programming and Management for 27 years until I took early retirement at age 50, save your fingers - it was 1997! It was an insurance company that had a nursing staff so they had me on weekly BP checks and blamed it on stress and white-coat syndrome.After I retired I got bored, got my CDL and became a Tour Bus Driver. I always fought to keep my BP under the mandatory CDL threshold of 140/90. Through the magic of medicine I was able to do so and simply blamed its elevation on stress and w-c syndrome again.In 2005 I returned from a 4-day trip to Toronto and had developed a pain in the kidney area of my right flank radiating down to my right testicle. I figured I had pulled something handling baggage and it would heal itself in a few days. When that didn’t happen I went to my local family doctor and he referred me to a Nephrologists. I went for a CT Scan and they found 2 small stones in my right kidney. We agreed to use pain medication and wait to see if they would pass. He recalled me in 3 months and repeated the CT Scan. The stones were still there but his opinion was that they were not the cause of my pain because of where they were located and the fact that they were stationary in the wall of the kidney. He sent me back to my family Dr. (There’s two that will be getting your “evolution of PA†Dr. G.!)I decided to go for a second opinion and decided to pursue that through the VA Hospital in White River Jct, VT. I felt this was a good choice because they not only have good doctors, they also have access to the doctors at DHMH. (This is the largest hospital in the area and a teaching hospital affiliated with Dartmouth College.) While the doctors are good and the service was “top notch†my being back in a more military environment unleashed a severe case of PTSD, dating back to my service in Vietnam. Enter “shrinks†and depression medicine (Duloxetine hcl 80 MG, andMIRTAZAPINE 15 MG with a LIOTHYRONINE 5 MCG kicker!)I was assigned to a Resident Dr. He referred me to a Nephrologists and he along with a bunch of other doctors took turns “adjusting†my high BP meds. The kidney Dr. (there’s another one to get Dr G.’s evolution of PA) came to the same conclusion as I had previously gotten - there were two kidney stones so he didn’t think he could help me. With nobody being able to come up with a better idea they decided it best to treat me with pain medicine. We added METHADONE 20 mg and OXYCODONE 10 MG/ACETAM 650 MG to the mix and that put an end to my professional driving career! (The government frowns on us using narcotics and driving the big rigs!) I guess the plus side if there is one is that I was put on 100% disability.Fast forward about 5 years to the summer of 2010. During those years various doctors and nurse practitioners tried different BP meds, both strengths and the meds themselves. I ended up transferring to a different unit and got a new primary care provider, Dr. Lynn Webster. In 2010 I had actually been with her for probably a year and they established that I had Diabetes Type II. AddMETFORMIN HCL 1000 MG to the medicine mix.Around this time my wife insisted my BiPAP machine wasn’t working as well as it had been so I’m off to DHMH for two sleep studies. I flunked the first one because I ran out of Oxygen. The second one determined they needed to raise my settings from 17/11 to 19/13 and needed nocturnal oxygen therapy of 4L. I saw Dr. Webster soon after this and asked her, “If I need oxygen when you are forcing air into my lungs at night, what happens during the day when I am drawing it in without a biPAP machine?†She thought that a good point so she put an Oximeter on me and walked down the hall. When we got back the meter was reading 83 so, you guessed it, Oxygen full time (2L normal and 3L with exertion).Chapter 2! - Now if you have hung with me we get to the good part - The Conn’s determination.It is around June of 2010 and the BP meds are as follows: AMLODIPINE BESYLATE 10 MG, CLONIDINE 0.2MG/24hr patch, HYDROCHLOROTHAZIDE 50 MG, LISINOPRIL 40 MG, LOSARTA N 100 MG, METOPROLOL TARTRATE 400 MG, MINOXIDIL 10 MG, and POTASSIUM CHLORIDE 40MG SA. (Does anyone see any problems yet? That’s only 8 including Potassium!) With all this we are able to get/keep my BP in the 160ish/83ish range. It will “float†10 pts. either way.The VA brings in a doctor to look at problematic BP (and I think other meds and their interaction.) Dr.Webster jumped at the opportunity and made an appointment for me.I go to the appointment and meet Dr. Faysal Yousifi who is a Nephrologists from Long Island. (He will hereafter be referred to as Saint Faysal!) I wasn’t impressed to be seeing another Nephrologists and asked him what that was all about. He said he was going to “Fix my BPâ€, to just bear with him.St. Faysal’s plan: He took me off HYDROCHLOROTHAZIDE and MINOXIDIL and put me on FUROSEMIDE 40 MG and (drum roll here would be appropriate) SPIRONOLACTONE 25 MG. He ordered some blood work, gave me a target BP goal of 140/80 or lower and wanted to see me again in about 6 weeks. (That turned out to be an easy goal, I was almost instantly in the mid 130’s over 70ish area!)When I saw him in mid August he was simply ecstatic with my readings. He was just like a kid who had just gotten everything he had ever asked for at Christmas. He jumped up, shook my hand and did a little dance, not once but three times during that appointment! He ordered up a CT Scan and raised the SPIRO to 50MG. He set up another appt. for me in Dec. and put in for an appt. with an Endocrinologist. Then he told me his time in VT would be over and he would be moving on “before snow fliesâ€!The CT Scan came back and showed: “There is a 13 x 12 mm well circumscribed ovoid hypo attenuating lesion in the right adrenal gland without significant interval change in size since the prior study. Left adrenal gland is normal. (They apparently were able to go back to the 2005 scan and find it although there was no mention of it in 2005 as far as I know.)I saw a resident Endocrinologist and my BP’s were running in the mid 1teens/low 60’s (116/62, 118/64, etc.) They tell me since I am getting no adverse reactions that they are happy to leave it there and she started removing other BP meds. She asked me which one I wanted to get rid of first. I tried to tell her that was her job but we finally agreed to get rid of the Losartan. She indicated they would wean me off all the BP and then leave me on a long term treatment of Spiro. I told her that my studying told me that we should remove the right Adrenal Gland if it proved to be a unilateral adenoma.I told her I had observed a few comments of, “the best part of it all is that I got rid of my flank pain after the offending adenoma was removed.†She indicated that it was “such a small tumor†that it wouldn’t be causing any pain. I told her I was a big boy and could accept it if I was wrong but it was worth a chance of “fixing†it if that was acceptable practice. She indicated she had “7 years of training†and it was her job to decide the best course of action. I explained to her that she would explain the options along with the risks but I would decide the course of action! I will probably be in the market for an Endocrinologist if you have one!I am interested in other’s experience with eliminating Flank Pain if you had an adrenalectomy.She spoke with her attending physician who said an AVS would be required “no matter what, nobody would proceed without one“. She indicated we had the best specialist in this area to do the test. I’m not sure if he has done 3 and everyone else has done 1 but you can “bet your bippy†I’ll find out before they start probing me! I let her know I really questioned potentially risking a problem with the veins for the left adrenal gland if it was a forgone conclusion we were going to remove the right one. (I have done some more reading and see there actually is some merit in her position!)She apparently set up an appt with my Pulmonologist to see if they would “sign off†on an operation. That doctor felt the question was premature until she knew what procedure we were considering! I tried to get her to consider AVS and she said she considered there to be three risk categories, low, medium and high. She put me at a medium.I finally got back to see my Primary Care Physician, Dr. Webster, last week. We had a long conversation regarding what had been going on in the last 4 months and the direction I saw thing going. She indicated Conn’s Syndrome was a “once in a lifetime experience†for general practice internists. I told her that may change after she read a copy of Dr. Grim’s “evolution of PA†(of which I provided her a copy.) She was very appreciative of it, promised to read it before we met again and asked that I “keep her in the loop†with anything else I came across. She had apparently read my Endocrinologist’s comment that such a “small tumor†couldn’t be causing pain. I suggested she might get up to speed before she decides what it might and might not do. She agreed that that was a prudent approach!We talked about eliminating more of my BP meds and decided to leave it as is until I get a chance to talk to a surgeon. We decided a lot needed to happen if AVS is in my future and we should come up with a plan. I meet with the surgeon, Dr. S. Laycock at DHMH, next Tuesday (02/22/2012) and will be exploring credentials. (On paper he looks good. He lists “Endocrine Tumors Program†among his specialties and “Laparoscopic Surgery for Adrenal…†under his practice notes. I feel I am still looking for a qualified Endocrinologist and Surgeon and will see what DHMH has to offer and what the VA recommends. I’m trying to keep an open mind at this point but may have to go to the greater Boston area to find the right solution. I haven’t ruled out the studies in Bethesda and would be interested if anyone in this group has experience with that.I haven’t included any of my lab reports because the VA sent me 15 pages and I am not sure exactly which numbers you are looking for. I also don’t know if my being on Spiro will have any adverse effects. Tell me what to send and I won’t copy all 15 pages to you!If you made it this far, thanks for humoring me! My current BP is 107/67 using the new 3-sampling method that I just learned! (I just realized I spent most of the afternoon in front of the screen, without even a nap and I still feel quite alert! Maybe, just maybe the Spiro is having a positive effect!)　　　<'s Conn Story.wps> Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 18, 2011 Report Share Posted February 18, 2011 said: " It is around June of 2010 and the BP meds are as follows: AMLODIPINE BESYLATE 10 MG, CLONIDINE 0.2MG/24hr patch, HYDROCHLOROTHAZIDE 50 MG, LISINOPRIL 40 MG, LOSARTA N 100 MG, METOPROLOL TARTRATE 400 MG, MINOXIDIL 10 MG, and POTASSIUM CHLORIDE 40MG SA. (Does anyone see any problems yet? That’s only 8 including Potassium!) With all this we are able to get/keep my BP in the 160ish/83ish range. It will “float†10 pts. either way. He took me off HYDROCHLOROTHAZIDE and MINOXIDIL and put me on FUROSEMIDE 40 MG and (drum roll here would be appropriate) SPIRONOLACTONE 25 MG. He ordered some blood work, gave me a target BP goal of 140/80 or lower and wanted to see me again in about 6 weeks. (That turned out to be an easy goal, I was almost instantly in the mid 130’s over 70ish area!) He ordered up a CT Scan and raised the SPIRO to 50MG. I saw a resident Endocrinologist and my BP’s were running in the mid 1teens/low 60’s (116/62, 118/64, etc.) " Some issues, . First, what about DASHing? Has anyone ever told you about it? Second, you cannot have AVS while on spiro. One doc at U of Michigan does it while on spiro but I don't know of any research that supports it. Finally, you should not have an adrenal removed without first having AVS. That adenoma you see might just be sitting there just  looking dumb. It's a bitch spending your life looking for the culprit, eh? Val From: hyperaldosteronism [mailto:hyperaldosteronism ] On Behalf Of Clarence Grim Tell us how your BP has done on spiro and DASHing? On Feb 18, 2011, at 9:15 PM, wrote: Here is a draft of my story to date. Comments and suggestions will be greatly appreciated. I didn't know if you wanted it as a seperate file so you are getting it both ways! - - - - - - - - - - - - - - - - - - - - - - - - - - - - - - - - - - - - - - - - - - - - - - - - - - - - - Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 18, 2011 Report Share Posted February 18, 2011 I tried to respond to Dr. G. and got an error > > > > > Here is a draft of my story to date. Comments and suggestions will > > be greatly appreciated. I didn't know if you wanted it as a > > seperate file so you are getting it both ways! > > - - - - - - - - - - - - - - - > > - - - - - - - - - - - - - - - > > - - - - - - - - - - - - - - - > > - - - - - - - - > > > > 2011/02/17 - By way of introduction, I am , a 64 year old > > morbidly obese individual living in Graniteville, VT and currently > > being treated at the Veteran’s Hospital in White River Jct., VT. I > > will be meeting with a surgeon at DHMHospital next Tuesday to try > > and figure out if there is anyone qualified to treat Conn’s > > Disease. I am in a unique position because I am able to get all my > > treatments thru the VA, I have private insurance thru my previous > > employer and I am on Medicare Part A due to disability so I will be > > looking for the best place to find treatment. > > > > This is not intended to be a full autobiography at this time but I > > will hit the highlights and plan to backfill later. (I need to > > introduce myself so I can start reaping some of the benefits of this > > group and Dr. Grim.) I feel like I was on a treadmill for 63 ½ years > > and then the train left the station and we are now traveling at Warp > > Speed! > > > > In addition to self diagnosed Conn’s Syndrome I am Morbidly Obese > > (315 lbs.), have Obstructive Sleep Apnea, am on Oxygen full time, am > > Diabetic Type II ,and have a continuous pain in my Right Flank area > > that radiates to my Right Testicle. (Does anyone want to guess on > > which side the Adrenal Adenoma is?) > > > > I have had high blood pressure for as long as I can remember. I > > worked in Computer Programming and Management for 27 years until I > > took early retirement at age 50, save your fingers - it was 1997! It > > was an insurance company that had a nursing staff so they had me on > > weekly BP checks and blamed it on stress and white-coat syndrome. > > > > After I retired I got bored, got my CDL and became a Tour Bus > > Driver. I always fought to keep my BP under the mandatory CDL > > threshold of 140/90. Through the magic of medicine I was able to do > > so and simply blamed its elevation on stress and w-c syndrome again. > > > > In 2005 I returned from a 4-day trip to Toronto and had developed a > > pain in the kidney area of my right flank radiating down to my right > > testicle. I figured I had pulled something handling baggage and it > > would heal itself in a few days. When that didn’t happen I went to > > my local family doctor and he referred me to a Nephrologists. I went > > for a CT Scan and they found 2 small stones in my right kidney. We > > agreed to use pain medication and wait to see if they would pass. He > > recalled me in 3 months and repeated the CT Scan. The stones were > > still there but his opinion was that they were not the cause of my > > pain because of where they were located and the fact that they were > > stationary in the wall of the kidney. He sent me back to my family > > Dr. (There’s two that will be getting your “evolution of PA†> > Dr. G.!) > > > > I decided to go for a second opinion and decided to pursue that > > through the VA Hospital in White River Jct, VT. I felt this was a > > good choice because they not only have good doctors, they also have > > access to the doctors at DHMH. (This is the largest hospital in the > > area and a teaching hospital affiliated with Dartmouth College.) > > While the doctors are good and the service was “top notch†my > > being back in a more military environment unleashed a severe case of > > PTSD, dating back to my service in Vietnam. Enter “shrinks†and > > depression medicine (Duloxetine hcl 80 MG, andMIRTAZAPINE 15 MG with > > a LIOTHYRONINE 5 MCG kicker!) > > > > I was assigned to a Resident Dr. He referred me to a Nephrologists > > and he along with a bunch of other doctors took turns “adjusting†> > my high BP meds. The kidney Dr. (there’s another one to get Dr > > G.’s evolution of PA) came to the same conclusion as I had > > previously gotten - there were two kidney stones so he didn’t think > > he could help me. With nobody being able to come up with a better > > idea they decided it best to treat me with pain medicine. We added > > METHADONE 20 mg and OXYCODONE 10 MG/ACETAM 650 MG to the mix and > > that put an end to my professional driving career! (The government > > frowns on us using narcotics and driving the big rigs!) I guess the > > plus side if there is one is that I was put on 100% disability. > > > > Fast forward about 5 years to the summer of 2010. During those years > > various doctors and nurse practitioners tried different BP meds, > > both strengths and the meds themselves. I ended up transferring to a > > different unit and got a new primary care provider, Dr. Lynn > > Webster. In 2010 I had actually been with her for probably a year > > and they established that I had Diabetes Type II. AddMETFORMIN HCL > > 1000 MG to the medicine mix. > > > > Around this time my wife insisted my BiPAP machine wasn’t working > > as well as it had been so I’m off to DHMH for two sleep studies. I > > flunked the first one because I ran out of Oxygen. The second one > > determined they needed to raise my settings from 17/11 to 19/13 and > > needed nocturnal oxygen therapy of 4L. I saw Dr. Webster soon after > > this and asked her, “If I need oxygen when you are forcing air into > > my lungs at night, what happens during the day when I am drawing it > > in without a biPAP machine?†She thought that a good point so she > > put an Oximeter on me and walked down the hall. When we got back the > > meter was reading 83 so, you guessed it, Oxygen full time (2L normal > > and 3L with exertion). > > > > Chapter 2! - Now if you have hung with me we get to the good part - > > The Conn’s determination. > > > > It is around June of 2010 and the BP meds are as follows: AMLODIPINE > > BESYLATE 10 MG, CLONIDINE 0.2MG/24hr patch, HYDROCHLOROTHAZIDE 50 > > MG, LISINOPRIL 40 MG, LOSARTA N 100 MG, METOPROLOL TARTRATE 400 MG, > > MINOXIDIL 10 MG, and POTASSIUM CHLORIDE 40MG SA. (Does anyone see > > any problems yet? That’s only 8 including Potassium!) With all this > > we are able to get/keep my BP in the 160ish/83ish range. It will > > “float†10 pts. either way. > > > > The VA brings in a doctor to look at problematic BP (and I think > > other meds and their interaction.) Dr.Webster jumped at the > > opportunity and made an appointment for me. > > > > I go to the appointment and meet Dr. Faysal Yousifi who is a > > Nephrologists from Long Island. (He will hereafter be referred to as > > Saint Faysal!) I wasn’t impressed to be seeing another > > Nephrologists and asked him what that was all about. He said he was > > going to “Fix my BPâ€, to just bear with him. > > > > St. Faysal’s plan: He took me off HYDROCHLOROTHAZIDE and MINOXIDIL > > and put me on FUROSEMIDE 40 MG and (drum roll here would be > > appropriate) SPIRONOLACTONE 25 MG. He ordered some blood work, gave > > me a target BP goal of 140/80 or lower and wanted to see me again in > > about 6 weeks. (That turned out to be an easy goal, I was almost > > instantly in the mid 130’s over 70ish area!) > > > > When I saw him in mid August he was simply ecstatic with my > > readings. He was just like a kid who had just gotten everything he > > had ever asked for at Christmas. He jumped up, shook my hand and did > > a little dance, not once but three times during that appointment! He > > ordered up a CT Scan and raised the SPIRO to 50MG. He set up another > > appt. for me in Dec. and put in for an appt. with an > > Endocrinologist. Then he told me his time in VT would be over and he > > would be moving on “before snow fliesâ€! > > > > The CT Scan came back and showed: “There is a 13 x 12 mm well > > circumscribed ovoid hypo attenuating lesion in the right adrenal > > gland without significant interval change in size since the prior > > study. Left adrenal gland is normal. (They apparently were able to > > go back to the 2005 scan and find it although there was no mention > > of it in 2005 as far as I know.) > > > > I saw a resident Endocrinologist and my BP’s were running in the > > mid 1teens/low 60’s (116/62, 118/64, etc.) They tell me since I am > > getting no adverse reactions that they are happy to leave it there > > and she started removing other BP meds. She asked me which one I > > wanted to get rid of first. I tried to tell her that was her job but > > we finally agreed to get rid of the Losartan. She indicated they > > would wean me off all the BP and then leave me on a long term > > treatment of Spiro. I told her that my studying told me that we > > should remove the right Adrenal Gland if it proved to be a > > unilateral adenoma. > > > > I told her I had observed a few comments of, “the best part of it > > all is that I got rid of my flank pain after the offending adenoma > > was removed.†She indicated that it was “such a small tumor†> > that it wouldn’t be causing any pain. I told her I was a big boy > > and could accept it if I was wrong but it was worth a chance of > > “fixing†it if that was acceptable practice. She indicated she > > had “7 years of training†and it was her job to decide the best > > course of action. I explained to her that she would explain the > > options along with the risks but I would decide the course of > > action! I will probably be in the market for an Endocrinologist if > > you have one! > > > > I am interested in other’s experience with eliminating Flank Pain > > if you had an adrenalectomy. > > > > She spoke with her attending physician who said an AVS would be > > required “no matter what, nobody would proceed without one“. She > > indicated we had the best specialist in this area to do the test. > > I’m not sure if he has done 3 and everyone else has done 1 but you > > can “bet your bippy†I’ll find out before they start probing > > me! I let her know I really questioned potentially risking a problem > > with the veins for the left adrenal gland if it was a forgone > > conclusion we were going to remove the right one. (I have done some > > more reading and see there actually is some merit in her position!) > > > > She apparently set up an appt with my Pulmonologist to see if they > > would “sign off†on an operation. That doctor felt the question > > was premature until she knew what procedure we were considering! I > > tried to get her to consider AVS and she said she considered there > > to be three risk categories, low, medium and high. She put me at a > > medium. > > > > I finally got back to see my Primary Care Physician, Dr. Webster, > > last week. We had a long conversation regarding what had been going > > on in the last 4 months and the direction I saw thing going. She > > indicated Conn’s Syndrome was a “once in a lifetime experience†> > for general practice internists. I told her that may change after > > she read a copy of Dr. Grim’s “evolution of PA†(of which I > > provided her a copy.) She was very appreciative of it, promised to > > read it before we met again and asked that I “keep her in the > > loop†with anything else I came across. She had apparently read my > > Endocrinologist’s comment that such a “small tumor†couldn’t > > be causing pain. I suggested she might get up to speed before she > > decides what it might and might not do. She agreed that that was a > > prudent approach! > > > > We talked about eliminating more of my BP meds and decided to leave > > it as is until I get a chance to talk to a surgeon. We decided a lot > > needed to happen if AVS is in my future and we should come up with a > > plan. I meet with the surgeon, Dr. S. Laycock at DHMH, next > > Tuesday (02/22/2012) and will be exploring credentials. (On paper he > > looks good. He lists “Endocrine Tumors Program†among his > > specialties and “Laparoscopic Surgery for Adrenal…†under his > > practice notes. I feel I am still looking for a qualified > > Endocrinologist and Surgeon and will see what DHMH has to offer and > > what the VA recommends. I’m trying to keep an open mind at this > > point but may have to go to the greater Boston area to find the > > right solution. I haven’t ruled out the studies in Bethesda and > > would be interested if anyone in this group has experience with that. > > > > I haven’t included any of my lab reports because the VA sent me 15 > > pages and I am not sure exactly which numbers you are looking for. I > > also don’t know if my being on Spiro will have any adverse effects. > > Tell me what to send and I won’t copy all 15 pages to you! > > > > If you made it this far, thanks for humoring me! My current BP is > > 107/67 using the new 3-sampling method that I just learned! (I just > > realized I spent most of the afternoon in front of the screen, > > without even a nap and I still feel quite alert! Maybe, just maybe > > the Spiro is having a positive effect!) > > > > 　 > > 　 > > 　 > > > > > > <'s Conn Story.wps> > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 18, 2011 Report Share Posted February 18, 2011 This is a test - I tried to respond and got an error so I want to see if it works and if it does I will send a real answer. > > > > > Here is a draft of my story to date. Comments and suggestions will > > be greatly appreciated. I didn't know if you wanted it as a > > seperate file so you are getting it both ways! > > - - - - - - - - - - - - - - - > > - - - - - - - - - - - - - - - > > - - - - - - - - - - - - - - - > > - - - - - - - - > > > > 2011/02/17 - By way of introduction, I am , a 64 year old > > morbidly obese individual living in Graniteville, VT and currently > > being treated at the Veteran’s Hospital in White River Jct., VT. I > > will be meeting with a surgeon at DHMHospital next Tuesday to try > > and figure out if there is anyone qualified to treat Conn’s > > Disease. I am in a unique position because I am able to get all my > > treatments thru the VA, I have private insurance thru my previous > > employer and I am on Medicare Part A due to disability so I will be > > looking for the best place to find treatment. > > > > This is not intended to be a full autobiography at this time but I > > will hit the highlights and plan to backfill later. (I need to > > introduce myself so I can start reaping some of the benefits of this > > group and Dr. Grim.) I feel like I was on a treadmill for 63 ½ years > > and then the train left the station and we are now traveling at Warp > > Speed! > > > > In addition to self diagnosed Conn’s Syndrome I am Morbidly Obese > > (315 lbs.), have Obstructive Sleep Apnea, am on Oxygen full time, am > > Diabetic Type II ,and have a continuous pain in my Right Flank area > > that radiates to my Right Testicle. (Does anyone want to guess on > > which side the Adrenal Adenoma is?) > > > > I have had high blood pressure for as long as I can remember. I > > worked in Computer Programming and Management for 27 years until I > > took early retirement at age 50, save your fingers - it was 1997! It > > was an insurance company that had a nursing staff so they had me on > > weekly BP checks and blamed it on stress and white-coat syndrome. > > > > After I retired I got bored, got my CDL and became a Tour Bus > > Driver. I always fought to keep my BP under the mandatory CDL > > threshold of 140/90. Through the magic of medicine I was able to do > > so and simply blamed its elevation on stress and w-c syndrome again. > > > > In 2005 I returned from a 4-day trip to Toronto and had developed a > > pain in the kidney area of my right flank radiating down to my right > > testicle. I figured I had pulled something handling baggage and it > > would heal itself in a few days. When that didn’t happen I went to > > my local family doctor and he referred me to a Nephrologists. I went > > for a CT Scan and they found 2 small stones in my right kidney. We > > agreed to use pain medication and wait to see if they would pass. He > > recalled me in 3 months and repeated the CT Scan. The stones were > > still there but his opinion was that they were not the cause of my > > pain because of where they were located and the fact that they were > > stationary in the wall of the kidney. He sent me back to my family > > Dr. (There’s two that will be getting your “evolution of PA†> > Dr. G.!) > > > > I decided to go for a second opinion and decided to pursue that > > through the VA Hospital in White River Jct, VT. I felt this was a > > good choice because they not only have good doctors, they also have > > access to the doctors at DHMH. (This is the largest hospital in the > > area and a teaching hospital affiliated with Dartmouth College.) > > While the doctors are good and the service was “top notch†my > > being back in a more military environment unleashed a severe case of > > PTSD, dating back to my service in Vietnam. Enter “shrinks†and > > depression medicine (Duloxetine hcl 80 MG, andMIRTAZAPINE 15 MG with > > a LIOTHYRONINE 5 MCG kicker!) > > > > I was assigned to a Resident Dr. He referred me to a Nephrologists > > and he along with a bunch of other doctors took turns “adjusting†> > my high BP meds. The kidney Dr. (there’s another one to get Dr > > G.’s evolution of PA) came to the same conclusion as I had > > previously gotten - there were two kidney stones so he didn’t think > > he could help me. With nobody being able to come up with a better > > idea they decided it best to treat me with pain medicine. We added > > METHADONE 20 mg and OXYCODONE 10 MG/ACETAM 650 MG to the mix and > > that put an end to my professional driving career! (The government > > frowns on us using narcotics and driving the big rigs!) I guess the > > plus side if there is one is that I was put on 100% disability. > > > > Fast forward about 5 years to the summer of 2010. During those years > > various doctors and nurse practitioners tried different BP meds, > > both strengths and the meds themselves. I ended up transferring to a > > different unit and got a new primary care provider, Dr. Lynn > > Webster. In 2010 I had actually been with her for probably a year > > and they established that I had Diabetes Type II. AddMETFORMIN HCL > > 1000 MG to the medicine mix. > > > > Around this time my wife insisted my BiPAP machine wasn’t working > > as well as it had been so I’m off to DHMH for two sleep studies. I > > flunked the first one because I ran out of Oxygen. The second one > > determined they needed to raise my settings from 17/11 to 19/13 and > > needed nocturnal oxygen therapy of 4L. I saw Dr. Webster soon after > > this and asked her, “If I need oxygen when you are forcing air into > > my lungs at night, what happens during the day when I am drawing it > > in without a biPAP machine?†She thought that a good point so she > > put an Oximeter on me and walked down the hall. When we got back the > > meter was reading 83 so, you guessed it, Oxygen full time (2L normal > > and 3L with exertion). > > > > Chapter 2! - Now if you have hung with me we get to the good part - > > The Conn’s determination. > > > > It is around June of 2010 and the BP meds are as follows: AMLODIPINE > > BESYLATE 10 MG, CLONIDINE 0.2MG/24hr patch, HYDROCHLOROTHAZIDE 50 > > MG, LISINOPRIL 40 MG, LOSARTA N 100 MG, METOPROLOL TARTRATE 400 MG, > > MINOXIDIL 10 MG, and POTASSIUM CHLORIDE 40MG SA. (Does anyone see > > any problems yet? That’s only 8 including Potassium!) With all this > > we are able to get/keep my BP in the 160ish/83ish range. It will > > “float†10 pts. either way. > > > > The VA brings in a doctor to look at problematic BP (and I think > > other meds and their interaction.) Dr.Webster jumped at the > > opportunity and made an appointment for me. > > > > I go to the appointment and meet Dr. Faysal Yousifi who is a > > Nephrologists from Long Island. (He will hereafter be referred to as > > Saint Faysal!) I wasn’t impressed to be seeing another > > Nephrologists and asked him what that was all about. He said he was > > going to “Fix my BPâ€, to just bear with him. > > > > St. Faysal’s plan: He took me off HYDROCHLOROTHAZIDE and MINOXIDIL > > and put me on FUROSEMIDE 40 MG and (drum roll here would be > > appropriate) SPIRONOLACTONE 25 MG. He ordered some blood work, gave > > me a target BP goal of 140/80 or lower and wanted to see me again in > > about 6 weeks. (That turned out to be an easy goal, I was almost > > instantly in the mid 130’s over 70ish area!) > > > > When I saw him in mid August he was simply ecstatic with my > > readings. He was just like a kid who had just gotten everything he > > had ever asked for at Christmas. He jumped up, shook my hand and did > > a little dance, not once but three times during that appointment! He > > ordered up a CT Scan and raised the SPIRO to 50MG. He set up another > > appt. for me in Dec. and put in for an appt. with an > > Endocrinologist. Then he told me his time in VT would be over and he > > would be moving on “before snow fliesâ€! > > > > The CT Scan came back and showed: “There is a 13 x 12 mm well > > circumscribed ovoid hypo attenuating lesion in the right adrenal > > gland without significant interval change in size since the prior > > study. Left adrenal gland is normal. (They apparently were able to > > go back to the 2005 scan and find it although there was no mention > > of it in 2005 as far as I know.) > > > > I saw a resident Endocrinologist and my BP’s were running in the > > mid 1teens/low 60’s (116/62, 118/64, etc.) They tell me since I am > > getting no adverse reactions that they are happy to leave it there > > and she started removing other BP meds. She asked me which one I > > wanted to get rid of first. I tried to tell her that was her job but > > we finally agreed to get rid of the Losartan. She indicated they > > would wean me off all the BP and then leave me on a long term > > treatment of Spiro. I told her that my studying told me that we > > should remove the right Adrenal Gland if it proved to be a > > unilateral adenoma. > > > > I told her I had observed a few comments of, “the best part of it > > all is that I got rid of my flank pain after the offending adenoma > > was removed.†She indicated that it was “such a small tumor†> > that it wouldn’t be causing any pain. I told her I was a big boy > > and could accept it if I was wrong but it was worth a chance of > > “fixing†it if that was acceptable practice. She indicated she > > had “7 years of training†and it was her job to decide the best > > course of action. I explained to her that she would explain the > > options along with the risks but I would decide the course of > > action! I will probably be in the market for an Endocrinologist if > > you have one! > > > > I am interested in other’s experience with eliminating Flank Pain > > if you had an adrenalectomy. > > > > She spoke with her attending physician who said an AVS would be > > required “no matter what, nobody would proceed without one“. She > > indicated we had the best specialist in this area to do the test. > > I’m not sure if he has done 3 and everyone else has done 1 but you > > can “bet your bippy†I’ll find out before they start probing > > me! I let her know I really questioned potentially risking a problem > > with the veins for the left adrenal gland if it was a forgone > > conclusion we were going to remove the right one. (I have done some > > more reading and see there actually is some merit in her position!) > > > > She apparently set up an appt with my Pulmonologist to see if they > > would “sign off†on an operation. That doctor felt the question > > was premature until she knew what procedure we were considering! I > > tried to get her to consider AVS and she said she considered there > > to be three risk categories, low, medium and high. She put me at a > > medium. > > > > I finally got back to see my Primary Care Physician, Dr. Webster, > > last week. We had a long conversation regarding what had been going > > on in the last 4 months and the direction I saw thing going. She > > indicated Conn’s Syndrome was a “once in a lifetime experience†> > for general practice internists. I told her that may change after > > she read a copy of Dr. Grim’s “evolution of PA†(of which I > > provided her a copy.) She was very appreciative of it, promised to > > read it before we met again and asked that I “keep her in the > > loop†with anything else I came across. She had apparently read my > > Endocrinologist’s comment that such a “small tumor†couldn’t > > be causing pain. I suggested she might get up to speed before she > > decides what it might and might not do. She agreed that that was a > > prudent approach! > > > > We talked about eliminating more of my BP meds and decided to leave > > it as is until I get a chance to talk to a surgeon. We decided a lot > > needed to happen if AVS is in my future and we should come up with a > > plan. I meet with the surgeon, Dr. S. Laycock at DHMH, next > > Tuesday (02/22/2012) and will be exploring credentials. (On paper he > > looks good. He lists “Endocrine Tumors Program†among his > > specialties and “Laparoscopic Surgery for Adrenal…†under his > > practice notes. I feel I am still looking for a qualified > > Endocrinologist and Surgeon and will see what DHMH has to offer and > > what the VA recommends. I’m trying to keep an open mind at this > > point but may have to go to the greater Boston area to find the > > right solution. I haven’t ruled out the studies in Bethesda and > > would be interested if anyone in this group has experience with that. > > > > I haven’t included any of my lab reports because the VA sent me 15 > > pages and I am not sure exactly which numbers you are looking for. I > > also don’t know if my being on Spiro will have any adverse effects. > > Tell me what to send and I won’t copy all 15 pages to you! > > > > If you made it this far, thanks for humoring me! My current BP is > > 107/67 using the new 3-sampling method that I just learned! (I just > > realized I spent most of the afternoon in front of the screen, > > without even a nap and I still feel quite alert! Maybe, just maybe > > the Spiro is having a positive effect!) > > > > 　 > > 　 > > 　 > > > > > > <'s Conn Story.wps> > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 18, 2011 Report Share Posted February 18, 2011 I am not DASHing yet - learning curve too steep, hope that doesn't disqualify me. I mentioned my BP at the very end because I felt it was only a number until you heard the rest of the story! It was 107/67 that night. > > > > > Here is a draft of my story to date. Comments and suggestions will > > be greatly appreciated. I didn't know if you wanted it as a > > seperate file so you are getting it both ways! > > - - - - - - - - - - - - - - - > > - - - - - - - - - - - - - - - > > - - - - - - - - - - - - - - - > > - - - - - - - - > > > > 2011/02/17 - By way of introduction, I am , a 64 year old > > morbidly obese individual living in Graniteville, VT and currently > > being treated at the Veteran’s Hospital in White River Jct., VT. I > > will be meeting with a surgeon at DHMHospital next Tuesday to try > > and figure out if there is anyone qualified to treat Conn’s > > Disease. I am in a unique position because I am able to get all my > > treatments thru the VA, I have private insurance thru my previous > > employer and I am on Medicare Part A due to disability so I will be > > looking for the best place to find treatment. > > > > This is not intended to be a full autobiography at this time but I > > will hit the highlights and plan to backfill later. (I need to > > introduce myself so I can start reaping some of the benefits of this > > group and Dr. Grim.) I feel like I was on a treadmill for 63 ½ years > > and then the train left the station and we are now traveling at Warp > > Speed! > > > > In addition to self diagnosed Conn’s Syndrome I am Morbidly Obese > > (315 lbs.), have Obstructive Sleep Apnea, am on Oxygen full time, am > > Diabetic Type II ,and have a continuous pain in my Right Flank area > > that radiates to my Right Testicle. (Does anyone want to guess on > > which side the Adrenal Adenoma is?) > > > > I have had high blood pressure for as long as I can remember. I > > worked in Computer Programming and Management for 27 years until I > > took early retirement at age 50, save your fingers - it was 1997! It > > was an insurance company that had a nursing staff so they had me on > > weekly BP checks and blamed it on stress and white-coat syndrome. > > > > After I retired I got bored, got my CDL and became a Tour Bus > > Driver. I always fought to keep my BP under the mandatory CDL > > threshold of 140/90. Through the magic of medicine I was able to do > > so and simply blamed its elevation on stress and w-c syndrome again. > > > > In 2005 I returned from a 4-day trip to Toronto and had developed a > > pain in the kidney area of my right flank radiating down to my right > > testicle. I figured I had pulled something handling baggage and it > > would heal itself in a few days. When that didn’t happen I went to > > my local family doctor and he referred me to a Nephrologists. I went > > for a CT Scan and they found 2 small stones in my right kidney. We > > agreed to use pain medication and wait to see if they would pass. He > > recalled me in 3 months and repeated the CT Scan. The stones were > > still there but his opinion was that they were not the cause of my > > pain because of where they were located and the fact that they were > > stationary in the wall of the kidney. He sent me back to my family > > Dr. (There’s two that will be getting your “evolution of PA†> > Dr. G.!) > > > > I decided to go for a second opinion and decided to pursue that > > through the VA Hospital in White River Jct, VT. I felt this was a > > good choice because they not only have good doctors, they also have > > access to the doctors at DHMH. (This is the largest hospital in the > > area and a teaching hospital affiliated with Dartmouth College.) > > While the doctors are good and the service was “top notch†my > > being back in a more military environment unleashed a severe case of > > PTSD, dating back to my service in Vietnam. Enter “shrinks†and > > depression medicine (Duloxetine hcl 80 MG, andMIRTAZAPINE 15 MG with > > a LIOTHYRONINE 5 MCG kicker!) > > > > I was assigned to a Resident Dr. He referred me to a Nephrologists > > and he along with a bunch of other doctors took turns “adjusting†> > my high BP meds. The kidney Dr. (there’s another one to get Dr > > G.’s evolution of PA) came to the same conclusion as I had > > previously gotten - there were two kidney stones so he didn’t think > > he could help me. With nobody being able to come up with a better > > idea they decided it best to treat me with pain medicine. We added > > METHADONE 20 mg and OXYCODONE 10 MG/ACETAM 650 MG to the mix and > > that put an end to my professional driving career! (The government > > frowns on us using narcotics and driving the big rigs!) I guess the > > plus side if there is one is that I was put on 100% disability. > > > > Fast forward about 5 years to the summer of 2010. During those years > > various doctors and nurse practitioners tried different BP meds, > > both strengths and the meds themselves. I ended up transferring to a > > different unit and got a new primary care provider, Dr. Lynn > > Webster. In 2010 I had actually been with her for probably a year > > and they established that I had Diabetes Type II. AddMETFORMIN HCL > > 1000 MG to the medicine mix. > > > > Around this time my wife insisted my BiPAP machine wasn’t working > > as well as it had been so I’m off to DHMH for two sleep studies. I > > flunked the first one because I ran out of Oxygen. The second one > > determined they needed to raise my settings from 17/11 to 19/13 and > > needed nocturnal oxygen therapy of 4L. I saw Dr. Webster soon after > > this and asked her, “If I need oxygen when you are forcing air into > > my lungs at night, what happens during the day when I am drawing it > > in without a biPAP machine?†She thought that a good point so she > > put an Oximeter on me and walked down the hall. When we got back the > > meter was reading 83 so, you guessed it, Oxygen full time (2L normal > > and 3L with exertion). > > > > Chapter 2! - Now if you have hung with me we get to the good part - > > The Conn’s determination. > > > > It is around June of 2010 and the BP meds are as follows: AMLODIPINE > > BESYLATE 10 MG, CLONIDINE 0.2MG/24hr patch, HYDROCHLOROTHAZIDE 50 > > MG, LISINOPRIL 40 MG, LOSARTA N 100 MG, METOPROLOL TARTRATE 400 MG, > > MINOXIDIL 10 MG, and POTASSIUM CHLORIDE 40MG SA. (Does anyone see > > any problems yet? That’s only 8 including Potassium!) With all this > > we are able to get/keep my BP in the 160ish/83ish range. It will > > “float†10 pts. either way. > > > > The VA brings in a doctor to look at problematic BP (and I think > > other meds and their interaction.) Dr.Webster jumped at the > > opportunity and made an appointment for me. > > > > I go to the appointment and meet Dr. Faysal Yousifi who is a > > Nephrologists from Long Island. (He will hereafter be referred to as > > Saint Faysal!) I wasn’t impressed to be seeing another > > Nephrologists and asked him what that was all about. He said he was > > going to “Fix my BPâ€, to just bear with him. > > > > St. Faysal’s plan: He took me off HYDROCHLOROTHAZIDE and MINOXIDIL > > and put me on FUROSEMIDE 40 MG and (drum roll here would be > > appropriate) SPIRONOLACTONE 25 MG. He ordered some blood work, gave > > me a target BP goal of 140/80 or lower and wanted to see me again in > > about 6 weeks. (That turned out to be an easy goal, I was almost > > instantly in the mid 130’s over 70ish area!) > > > > When I saw him in mid August he was simply ecstatic with my > > readings. He was just like a kid who had just gotten everything he > > had ever asked for at Christmas. He jumped up, shook my hand and did > > a little dance, not once but three times during that appointment! He > > ordered up a CT Scan and raised the SPIRO to 50MG. He set up another > > appt. for me in Dec. and put in for an appt. with an > > Endocrinologist. Then he told me his time in VT would be over and he > > would be moving on “before snow fliesâ€! > > > > The CT Scan came back and showed: “There is a 13 x 12 mm well > > circumscribed ovoid hypo attenuating lesion in the right adrenal > > gland without significant interval change in size since the prior > > study. Left adrenal gland is normal. (They apparently were able to > > go back to the 2005 scan and find it although there was no mention > > of it in 2005 as far as I know.) > > > > I saw a resident Endocrinologist and my BP’s were running in the > > mid 1teens/low 60’s (116/62, 118/64, etc.) They tell me since I am > > getting no adverse reactions that they are happy to leave it there > > and she started removing other BP meds. She asked me which one I > > wanted to get rid of first. I tried to tell her that was her job but > > we finally agreed to get rid of the Losartan. She indicated they > > would wean me off all the BP and then leave me on a long term > > treatment of Spiro. I told her that my studying told me that we > > should remove the right Adrenal Gland if it proved to be a > > unilateral adenoma. > > > > I told her I had observed a few comments of, “the best part of it > > all is that I got rid of my flank pain after the offending adenoma > > was removed.†She indicated that it was “such a small tumor†> > that it wouldn’t be causing any pain. I told her I was a big boy > > and could accept it if I was wrong but it was worth a chance of > > “fixing†it if that was acceptable practice. She indicated she > > had “7 years of training†and it was her job to decide the best > > course of action. I explained to her that she would explain the > > options along with the risks but I would decide the course of > > action! I will probably be in the market for an Endocrinologist if > > you have one! > > > > I am interested in other’s experience with eliminating Flank Pain > > if you had an adrenalectomy. > > > > She spoke with her attending physician who said an AVS would be > > required “no matter what, nobody would proceed without one“. She > > indicated we had the best specialist in this area to do the test. > > I’m not sure if he has done 3 and everyone else has done 1 but you > > can “bet your bippy†I’ll find out before they start probing > > me! I let her know I really questioned potentially risking a problem > > with the veins for the left adrenal gland if it was a forgone > > conclusion we were going to remove the right one. (I have done some > > more reading and see there actually is some merit in her position!) > > > > She apparently set up an appt with my Pulmonologist to see if they > > would “sign off†on an operation. That doctor felt the question > > was premature until she knew what procedure we were considering! I > > tried to get her to consider AVS and she said she considered there > > to be three risk categories, low, medium and high. She put me at a > > medium. > > > > I finally got back to see my Primary Care Physician, Dr. Webster, > > last week. We had a long conversation regarding what had been going > > on in the last 4 months and the direction I saw thing going. She > > indicated Conn’s Syndrome was a “once in a lifetime experience†> > for general practice internists. I told her that may change after > > she read a copy of Dr. Grim’s “evolution of PA†(of which I > > provided her a copy.) She was very appreciative of it, promised to > > read it before we met again and asked that I “keep her in the > > loop†with anything else I came across. She had apparently read my > > Endocrinologist’s comment that such a “small tumor†couldn’t > > be causing pain. I suggested she might get up to speed before she > > decides what it might and might not do. She agreed that that was a > > prudent approach! > > > > We talked about eliminating more of my BP meds and decided to leave > > it as is until I get a chance to talk to a surgeon. We decided a lot > > needed to happen if AVS is in my future and we should come up with a > > plan. I meet with the surgeon, Dr. S. Laycock at DHMH, next > > Tuesday (02/22/2012) and will be exploring credentials. (On paper he > > looks good. He lists “Endocrine Tumors Program†among his > > specialties and “Laparoscopic Surgery for Adrenal…†under his > > practice notes. I feel I am still looking for a qualified > > Endocrinologist and Surgeon and will see what DHMH has to offer and > > what the VA recommends. I’m trying to keep an open mind at this > > point but may have to go to the greater Boston area to find the > > right solution. I haven’t ruled out the studies in Bethesda and > > would be interested if anyone in this group has experience with that. > > > > I haven’t included any of my lab reports because the VA sent me 15 > > pages and I am not sure exactly which numbers you are looking for. I > > also don’t know if my being on Spiro will have any adverse effects. > > Tell me what to send and I won’t copy all 15 pages to you! > > > > If you made it this far, thanks for humoring me! My current BP is > > 107/67 using the new 3-sampling method that I just learned! (I just > > realized I spent most of the afternoon in front of the screen, > > without even a nap and I still feel quite alert! Maybe, just maybe > > the Spiro is having a positive effect!) > > > > 　 > > 　 > > 　 > > > > > > <'s Conn Story.wps> > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 19, 2011 Report Share Posted February 19, 2011 Val, First I need to ask who you are? I thought my story was out for approval and then I would move it into the " stories " files. At this pointI don't know if just you and Dr. Grim (he asked about DASHing and current BP) are seeing it or if " the whole world " is viewing. It would be nice to only have to address questions and issues once! Bear with me, in addition to getting a fast education re. Conns I'm also learning Yahoo! Comments: DASHing - No, Learning curve is too steep to include that now as I try to get up to speed on Conn's before the Dr.'s (and Residents) at the VA take me down too many paths. Your observation re. Spiro and AVS is exactly one of the issues. I am aware of the issue and that is exactly the reason Dr. Webster and I didn't proceed with eliminating any more BP meds. We need to develope a plan. I am also aware that tumor removal doesn't " fix it " in about a third of the time, depending on who's numbers you use. I have an additional issue that needs to be considered, namely the flank pain radiatimg to my right Testicle. It's hard to explain to a woman who has never had what we call " had our bell rung " But that is the best way I can explain it. Six year is long enough, especially since the narcotics don't totally ever eliminate it! So there-in lies the vicious circle. Does the tumor continue to grow? If it is causing the pain and it grows, does the pain get worse? If we are going to remove it anyway do we still jump through the hoops and spend $27,000 do the AVS and risk damaging the left Adrenal? I think not! Now you might start to understand why one of my early stops is with a surgeon - I thought that would raise some issues! Hang on - IT'S GOING TO BE A GOOD RIDE! > > Here is a draft of my story to date. Comments and suggestions will be greatly appreciated. I didn't know if you wanted it as a seperate file so you are getting it both ways! > - - - - - - - - - - - - - - - - - - - - - - - - - - - - - - - - - - - - - - - - - - - - - - - - - - - - - > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 19, 2011 Report Share Posted February 19, 2011 First your story is posted to yahoo group so all in group can read it. I go to the WRJ VA After 5 years they have no clue is to what is wrong with me. I have also been seen at Dartmouth and still have no answers. If the VA and Darthmouth Dr's were up to speed they would know that Conn's is very common one out of ten people that have high blood pressuer have Conn's. > > > > Here is a draft of my story to date. Comments and suggestions will be greatly appreciated. I didn't know if you wanted it as a seperate file so you are getting it both ways! > > - - - - - - - - - - - - - - - - - - - - - - - - - - - - - - - - - - - - - - - - - - - - - - - - - - - - - > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 19, 2011 Report Share Posted February 19, 2011 What type of scanner do you have? the newer HP scanners let you save sate scans to rich text format. you can then copy paste this to emails. Can not attach files to group emails. You can upload them to files on group site. > > > > > > Here is a draft of my story to date. Comments and suggestions will be greatly appreciated. I didn't know if you wanted it as a seperate file so you are getting it both ways! > > > - - - - - - - - - - - - - - - - - - - - - - - - - - - - - - - - - - - - - - - - - - - - - - - - - - - - - > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 19, 2011 Report Share Posted February 19, 2011 Do you think you can get Dr. Webster up to speed on Conn's. Do need someone in the WRJ VA that knows what it is. See if you can get her to join this group. > > > > > > Here is a draft of my story to date. Comments and suggestions will be greatly appreciated. I didn't know if you wanted it as a seperate file so you are getting it both ways! > > > - - - - - - - - - - - - - - - - - - - - - - - - - - - - - - - - - - - - - - - - - - - - - - - - - - - - - > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 19, 2011 Report Share Posted February 19, 2011 I am sure Dr grim has some idea on your kidney stones. But I would guess this has a lot to do with your pain. They can do ultra sound treatment to break them up. > > > > > > > > Here is a draft of my story to date. Comments and suggestions will be greatly appreciated. I didn't know if you wanted it as a seperate file so you are getting it both ways! > > > > - - - - - - - - - - - - - - - - - - - - - - - - - - - - - - - - - - - - - - - - - - - - - - - - - - - - - > > > > > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 19, 2011 Report Share Posted February 19, 2011 Do you sometimes get the feeling that the VA thinks they have spent enough money on you so stop looking for your problem? > > > > > > > > > > Here is a draft of my story to date. Comments and suggestions will be greatly appreciated. I didn't know if you wanted it as a seperate file so you are getting it both ways! > > > > > - - - - - - - - - - - - - - - - - - - - - - - - - - - - - - - - - - - - - - - - - - - - - - - - - - - - - > > > > > > > > > > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 19, 2011 Report Share Posted February 19, 2011 Val, I certainly wasn't requesting that people not comment, I guess I was just confused on the process. As a new member I thought I had sent my e-mail " up for approval " and would then move it to Files when instructed. When you responded I was surprised because I thought I would get approval and do the move before the comments started. I just wanted to make sure everyone else was seeing our interchange. I got some other comments so I guess everyone is seeing it if they care to! Regarding the " Who are you " question, its hard as a new member to figure out what kind of credit to give the answer/comment if you don't know the source. I'm a 27-year computer specialist and learned a long time ago that the value of the information is only as good as its source; the Information Age can be a Dual Edged Sword if you get what I mean! We'll be in touch > > > > Here is a draft of my story to date. Comments and suggestions will be greatly appreciated. I didn't know if you wanted it as a seperate file so you are getting it both ways! > > - - - - - - - - - - - - - - - - - - - - - - - - - - - - - - - - - - - - - - - - - - - - - - - - - - - - - > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 19, 2011 Report Share Posted February 19, 2011 I read the process and thought I had to go for approval before I posted it and everyone started commenting. I guess that's not the case! I can't question your comment that both the VA and DHMC do not know what is wrong with you but I have trouble making the leap that neither know anything about Conn's. If you read my story, I obviously found someone at the VA that had some idea about it, Dr. Yousfi. While he has moved on I don't know who else he saw in 6 months but there must have been some and they each would have had a Dr. watching what was going on. As for DHMC, there was a mention of a Dr. BelBruno yesterday. (I believe you provided a link to her credentials.) I mentioned a surgeon named Laycock that I am seeing on Tuesday. Both of them have " Endocrine Tumor Program " in their credentials which you can bet I for one will be trying to find a lot more about! (That is if I don't already have an answer, my sister-in-law is an Acute Care Nurse Practitioner in Cardiothoracic Surgery department at DHMC and I'll bet she'll have some idea who Dr. Laycock is! I have a call in to her this weekend.) > > > > > > Here is a draft of my story to date. Comments and suggestions will be greatly appreciated. I didn't know if you wanted it as a seperate file so you are getting it both ways! > > > - - - - - - - - - - - - - - - - - - - - - - - - - - - - - - - - - - - - - - - - - - - - - - - - - - - - - > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 19, 2011 Report Share Posted February 19, 2011 Don't know if I am going to get her that involved - I'm going to get her knowledgable enough to treat me! She is a damn good Internest but I don't know her Endocriology background. Besides, If she gets too good and moves on I have to look for a new Primary Care and I don't care to do that. Call me selfish but I have already done that in the Psychology Dept! > > > > > > > > Here is a draft of my story to date. Comments and suggestions will be greatly appreciated. I didn't know if you wanted it as a seperate file so you are getting it both ways! > > > > - - - - - - - - - - - - - - - - - - - - - - - - - - - - - - - - - - - - - - - - - - - - - - - - - - - - - > > > > > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 19, 2011 Report Share Posted February 19, 2011 ABSOLUTELY NOT! They have always been willing to spend whatever necessary to treat me, ie 2- sleep studies, 2 ct-scans, stress tests, foot Dr. every 4-6 months, 2 sleep studiesat DHMC, 2 bi-PAP machines, Oxygen therapy, etc, etc, etc. (Hell, they even bought my boots this winter!) Re: Dr Grim's ideas on my kidney stones, I think I'll pass on that one. I have been seen been seen by two very qualified kidney drs., had MRIs, ct-scans, ultrasounds and even an offer to blast them (with a 99+% assurance that it would make no difference). I think that " puppy if in the kennel " if you get my drift! > > > > > > > > > > > > Here is a draft of my story to date. Comments and suggestions will be greatly appreciated. I didn't know if you wanted it as a seperate file so you are getting it both ways! > > > > > > - - - - - - - - - - - - - - - - - - - - - - - - - - - - - - - - - - - - - - - - - - - - - - - - - - - - - > > > > > > > > > > > > > > > > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 19, 2011 Report Share Posted February 19, 2011 VA Dr's get always get paid unless gov. runs out of money. Do agree good Dr should be paid more. > >> > > > > > >> > > > > Here is a draft of my story to date. Comments and suggestions will be greatly appreciated. I didn't know if you wanted it as a seperate file so you are getting it both ways! > >> > > > > - - - - - - - - - - - - - - - - - - - - - - - - - - - - - - - - - - - - - - - - - - - - - - - - - - - - - > >> > > > > > >> > > > > >> > > > >> > > >> > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 19, 2011 Report Share Posted February 19, 2011 Yes I did provide the like. I also learned something this. The Cancer center has there own DR. They shoud be more up to speed on Conn's. Or would hope so. > > > > > > > > Here is a draft of my story to date. Comments and suggestions will be greatly appreciated. I didn't know if you wanted it as a seperate file so you are getting it both ways! > > > > - - - - - - - - - - - - - - - - - - - - - - - - - - - - - - - - - - - - - - - - - - - - - - - - - - - - - > > > > > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 19, 2011 Report Share Posted February 19, 2011 I have talked to others that have good care and others that have poor care. It has been said more then once to me by providers they have spent a lot on money on me. Because I take meds that change the outcome of the tests for conn's I have asked to be retested off the meds they will not do it. I went to Dartmouth because I thought they would test me off the meds but they tested me on the meds. > > > > > > > > > > > > > > Here is a draft of my story to date. Comments and suggestions will be greatly appreciated. I didn't know if you wanted it as a seperate file so you are getting it both ways! > > > > > > > - - - - - - - - - - - - - - - - - - - - - - - - - - - - - - - - - - - - - - - - - - - - - - - - - - - - - > > > > > > > > > > > > > > > > > > > > > > > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 19, 2011 Report Share Posted February 19, 2011 Have to understand when Conn's or PA is treated may help your diabetes as will. > > > > > > > > > > > > Here is a draft of my story to date. Comments and suggestions will be greatly appreciated. I didn't know if you wanted it as a seperate file so you are getting it both ways! > > > > > > - - - - - - - - - - - - - - - - - - - - - - - - - - - - - - - - - - - - - - - - - - - - - - - - - - - - - > > > > > > > > > > > > > > > > > > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 19, 2011 Report Share Posted February 19, 2011 Does having PA ever cause Testicle pain? > > > > > > > > > > > > Here is a draft of my story to date. Comments and suggestions will be greatly appreciated. I didn't know if you wanted it as a seperate file so you are getting it both ways! > > > > > > - - - - - - - - - - - - - - - - - - - - - - - - - - - - - - - - - - - - - - - - - - - - - - - - - - - - - > > > > > > > > > > > > > > > > > > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 19, 2011 Report Share Posted February 19, 2011 I have never had hematuria as far as I know. The last two Urine tests (12/29 and 7/08/2010 both show NEG for Blood. If this was an indicator wouldn't there likely to be other symptoms in the last 6 yrs? > > > > > > > > > > > > Here is a draft of my story to date. Comments and suggestions will be greatly appreciated. I didn't know if you wanted it as a seperate file so you are getting it both ways! > > > > > > - - - - - - - - - - - - - - - - - - - - - - - - - - - - - - - - - - - - - - - - - - - - - - - - - - - - - > > > > > > > > > > > > > > > > > > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 19, 2011 Report Share Posted February 19, 2011 If you refer too my part of my story where I said, " I go to the appointment and meet Dr. Faysal Yousifi who is a Nephrologists from Long Island. " I need to explain that a little better in that my understanding is that he was here to set something up and impart knowledge locally re: HTN and specifically Conn's. He certainly appears to have nailed it in my case! As I understand it, he went on to another VA, in the mid-west, maybe S. Dakota, to do the same thing there. > > > > > > > > > > Here is a draft of my story to date. Comments and suggestions will be greatly appreciated. I didn't know if you wanted it as a seperate file so you are getting it both ways! > > > > > - - - - - - - - - - - - - - - - - - - - - - - - - - - - - - - - - - - - - - - - - - - - - - - - - - - - - > > > > > > > > > > > > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 19, 2011 Report Share Posted February 19, 2011 Have you been to the VET center for your PTSD? > > Here is a draft of my story to date. Comments and suggestions will be greatly > appreciated. I didn't know if you wanted it as a seperate file so you are > getting it both ways! > -   -  -  -   -   -   -   -  -  -  -  -   -   -  -  -   -   > -   -   -  -  -  -  -   -   -  -  -   -   -   -   -  -  -  -  > -   -   -  -  -   -   -   -   -  -  -  -  -   -  -  -  -  - > > > 2011/02/17 - By way of introduction, I am , a 64 year old morbidly > obese individual living in Graniteville, VT and currently being treated at the > Veteran’s Hospital in White River Jct., VT. I will be meeting with a surgeon at > DHMHospital next Tuesday to try and figure out if there is anyone qualified to > treat Conn’s Disease. I am in a unique position because I am able to get all my > treatments thru the VA, I have private insurance thru my previous employer and I > am on Medicare Part A due to disability so I will be looking for the best place > to find treatment. > This is not intended to be a full autobiography at this time but I will hit the > highlights and plan to backfill later. (I need to introduce myself so I can > start reaping some of the benefits of this group and Dr. Grim.) I feel like I > was on a treadmill for 63 ½ years and then the train left the station and we are > now traveling at Warp Speed! > In addition to self diagnosed Conn’s Syndrome I am Morbidly Obese (315 lbs.), > have Obstructive Sleep Apnea, am on Oxygen full time, am Diabetic Type II ,and > have a continuous pain in my Right Flank area that radiates to my Right > Testicle. (Does anyone want to guess on which side the Adrenal Adenoma is?) > I have had high blood pressure for as long as I can remember. I worked in > Computer Programming and Management for 27 years until I took early retirement > at age 50, save your fingers - it was 1997! It was an insurance company that had > a nursing staff so they had me on weekly BP checks and blamed it on stress and > white-coat syndrome. > After I retired I got bored, got my CDL and became a Tour Bus Driver. I always > fought to keep my BP under the mandatory CDL threshold of 140/90. Through the > magic of medicine I was able to do so and simply blamed its elevation on stress > and w-c syndrome again. > In 2005 I returned from a 4-day trip to Toronto and had developed a pain in the > kidney area of my right flank radiating down to my right testicle. I figured I > had pulled something handling baggage and it would heal itself in a few days. > When that didn’t happen I went to my local family doctor and he referred me to a > Nephrologists. I went for a CT Scan and they found 2 small stones in my right > kidney. We agreed to use pain medication and wait to see if they would pass. He > recalled me in 3 months and repeated the CT Scan. The stones were still there > but his opinion was that they were not the cause of my pain because of where > they were located and the fact that they were stationary in the wall of the > kidney. He sent me back to my family Dr. (There’s two that will be getting your > “evolution of PA†Dr. G.!) > I decided to go for a second opinion and decided to pursue that through the VA > Hospital in White River Jct, VT. I felt this was a good choice because they not > only have good doctors, they also have access to the doctors at DHMH. (This is > the largest hospital in the area and a teaching hospital affiliated with > Dartmouth College.) While the doctors are good and the service was “top notch†> my being back in a more military environment unleashed a severe case of PTSD, > dating back to my service in Vietnam. Enter “shrinks†and depression medicine > (Duloxetine hcl 80 MG, and MIRTAZAPINE 15 MG with a LIOTHYRONINE 5 MCG kicker!) > I was assigned to a Resident Dr. He referred me to a Nephrologists and he along > with a bunch of other doctors took turns “adjusting†my high BP meds. The kidney > Dr. (there’s another one to get Dr G.’s evolution of PA) came to the same > conclusion as I had previously gotten - there were two kidney stones so he > didn’t think he could help me. With nobody being able to come up with a better > idea they decided it best to treat me with pain medicine. We added METHADONE 20 > mg and OXYCODONE 10 MG/ACETAM 650 MG to the mix and that put an end to my > professional driving career! (The government frowns on us using narcotics and > driving the big rigs!) I guess the plus side if there is one is that I was put > on 100% disability. > Fast forward about 5 years to the summer of 2010. During those years various > doctors and nurse practitioners tried different BP meds, both strengths and the > meds themselves. I ended up transferring to a different unit and got a new > primary care provider, Dr. Lynn Webster. In 2010 I had actually been with her > for probably a year and they established that I had Diabetes Type II. Add > METFORMIN HCL 1000 MG to the medicine mix. > Around this time my wife insisted my BiPAP machine wasn’t working as well as it > had been so I’m off to DHMH for two sleep studies. I flunked the first one > because I ran out of Oxygen. The second one determined they needed to raise my > settings from 17/11 to 19/13 and needed nocturnal oxygen therapy of 4L. I saw > Dr. Webster soon after this and asked her, “If I need oxygen when you are > forcing air into my lungs at night, what happens during the day when I am > drawing it in without a biPAP machine?†She thought that a good point so she put > an Oximeter on me and walked down the hall. When we got back the meter was > reading 83 so, you guessed it, Oxygen full time (2L normal and 3L with > exertion).Chapter 2! > > It is around June of 2010 and the BP meds are as follows: AMLODIPINE BESYLATE 10 > MG, CLONIDINE 0.2MG/24hr patch, HYDROCHLOROTHAZIDE 50 MG, LISINOPRIL 40 MG, > LOSARTA N 100 MG, METOPROLOL TARTRATE 400 MG, MINOXIDIL 10 MG, and POTASSIUM > CHLORIDE 40MG SA. (Does anyone see any problems yet? That’s only 8 including > Potassium!) With all this we are able to get/keep my BP in the 160ish/83ish > range. It will “float†10 pts. either way. > The VA brings in a doctor to look at problematic BP (and I think other meds and > their interaction.) Dr.Webster jumped at the opportunity and made an appointment > for me. > I go to the appointment and meet Dr. Faysal Yousifi who is a Nephrologists from > Long Island. (He will hereafter be referred to as Saint Faysal!) I wasn’t > impressed to be seeing another Nephrologists and asked him what that was all > about. He said he was going to “Fix my BPâ€, to just bear with him. > > St. Faysal’s plan: He took me off HYDROCHLOROTHAZIDE and MINOXIDIL and put me on > FUROSEMIDE 40 MG and (drum roll here would be appropriate) SPIRONOLACTONE 25 MG. > He ordered some blood work, gave me a target BP goal of 140/80 or lower and > wanted to see me again in about 6 weeks. (That turned out to be an easy goal, I > was almost instantly in the mid 130’s over 70ish area!) > When I saw him in mid August he was simply ecstatic with my readings. He was > just like a kid who had just gotten everything he had ever asked for at > Christmas. He jumped up, shook my hand and did a little dance, not once but > three times during that appointment! He ordered up a CT Scan and raised the > SPIRO to 50MG. He set up another appt. for me in Dec. and put in for an appt. > with an Endocrinologist. Then he told me his time in VT would be over and he > would be moving on “before snow fliesâ€! The CT Scan came back and showed: “There > is a 13 x 12 mm well circumscribed ovoid hypo attenuatinglesion in the right > adrenal gland without significant interval change in size since the prior study. > I saw a resident Endocrinologist and my BP’s were running in the mid 1teens/low > 60’s (116/62, 118/64, etc.) They tell me since I am getting no adverse reactions > that they are happy to leave it there and she started removing other BP meds. > She asked me which one I wanted to get rid of first. I tried to tell her that > was her job but we finally agreed to get rid of the Losartan. She indicated they > would wean me off all the BP and then leave me on a long term treatment of > Spiro. I told her that my studying told me that we should remove the right > Adrenal Gland if it proved to be a unilateral adenoma. > I told her I had observed a few comments of, “the best part of it all is that I > got rid of my flank pain after the offending adenoma was removed.†She indicated > that it was “such a small tumor†that it wouldn’t be causing any pain. I told > her I was a big boy and could accept it if I was wrong but it was worth a chance > of “fixing†it if that was acceptable practice. She indicated she had “7 years > of training†and it was her job to decide the best course of action. I explained > to her that she would explain the options along with the risks but I would > decide the course of action! I will probably be in the market for an > Endocrinologist if you have one!I am interested in other’s experience with > eliminating Flank Pain if you had an adrenalectomy. > She spoke with her attending physician whosaid an AVS would be required “no > matter what, nobody would proceed without one“. She indicated we had the best > specialist in this area to do the test. I’m not sure if he has done 3 and > everyone else has done 1 but you can “bet your bippy†I’ll find out before they > start probing me! I let her know I really questioned potentially risking a > problem with the veins for the left adrenal gland if it was a forgone conclusion > we were going to remove the right one. (I have done some more reading and see > there actually is some merit in her position!) > She apparently set up an appt with my Pulmonologist to see if they would “sign > off†on an operation. That doctor felt the question was premature until she knew > what procedure we were considering! I tried to get her to consider AVS and she > said she considered there to be three risk categories, low, medium and high. She > put me at a medium. > I finally got back to see my Primary Care Physician, Dr. Webster, last week. We > had a long conversation regarding what had been going on in the last 4 months > and the direction I saw thing going. She indicated Conn’s Syndrome was a “once > in a lifetime experience†for general practice internists. I told her that may > change after she read a copy of Dr. Grim’s “evolution of PA†(of which I > provided her a copy.) She was very appreciative of it, promised to read it > before we met again and asked that I “keep her in the loop†with anything else I > came across. She had apparently read my Endocrinologist’s comment that such a > “small tumor†couldn’t be causing pain. I suggested she might get up to speed > before she decides what it might and might not do. She agreed that that was a > prudent approach! > We talked about eliminating more of my BP meds and decided to leave it as is > until I get a chance to talk to a surgeon. We decided a lot needed to happen if > AVS is in my future and we should come up with a plan. I meet with the surgeon, > Dr. S. Laycock at DHMH, next Tuesday (02/22/2012) and will be exploring > credentials. (On paper he looks good. He lists “Endocrine Tumors Program†among > his specialties and “Laparoscopic Surgery for Adrenal…†under his practice > notes. I feel I am still looking for a qualified Endocrinologist and Surgeon and > will see what DHMH has to offer and what the VA recommends. I’m trying to keep > an open mind at this point but may have to go to the greater Boston area to find > the right solution. I haven’t ruled out the studies in Bethesda and would be > interested if anyone in this group has experience with that. > I haven’t included any of my lab reports because the VA sent me 15 pages and I > am not sure exactly which numbers you are looking for. I also don’t know if my > being on Spiro will have any adverse effects. Tell me what to send and I won’t > copy all 15 pages to you! > If you made it this far, thanks for humoring me! My current BP is 107/67 using > the new 3-sampling method that I just learned! (I just realized I spent most of > the afternoon in front of the screen, without even a nap and I still feel quite > alert! Maybe, just maybe the Spiro is having a positive effect!) > 　 > 　 > 　 Left adrenal gland is normal. (They apparently were able to go back to the > 2005 scan and find it although there was no mention of it in 2005 as far as I > know.)- Now if you have hung with me we get to the good part - The Conn’s > determination. > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 19, 2011 Report Share Posted February 19, 2011 I understand that, Agent Orange may be having an impact also. > > > > > > > > > > > > > > Here is a draft of my story to date. Comments and suggestions will be greatly appreciated. I didn't know if you wanted it as a seperate file so you are getting it both ways! > > > > > > > - - - - - - - - - - - - - - - - - - - - - - - - - - - - - - - - - - - - - - - - - - - - - - - - - - - - - > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 19, 2011 Report Share Posted February 19, 2011 You do know that this is an automatic service connected disability? > > > > > > > > > > > > > > > > Here is a draft of my story to date. Comments and suggestions will be greatly appreciated. I didn't know if you wanted it as a seperate file so you are getting it both ways! > > > > > > > > - - - - - - - - - - - - - - - - - - - - - - - - - - - - - - - - - - - - - - - - - - - - - - - - - - - - - > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > Quote Link to comment Share on other sites More sharing options...
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