National Institute of Health info for PA patients.

The following is an edited version of a post on the Yahoo hyperaldosteronism group that I felt was too good not to share. While I thought I had a hard time with my PA diagnosis, after following the stories of others on the group over the years, it turns out mine was basically a walk in the park in comparision. When I was frustrated with the response of my medical team, at one point I came close to cashing out my 401K to fund a trip to NIH (to pay my way as well as a friend’s) – I ended up not having to go that route, but had I known some of the following I might have approached things differently.

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“In my journey to find the right answer as to whether or not to have an adrenalectomy, I decided to contact NIH.  I was surprised to learn that NIH will take a look at the medical records of PA patients, for free, if you are needing advice on whether or not to go forward with surgery, based on testing you’ve already had.  Or you can speak with them before you’ve had anything done to see if you might fit into one of their protocols of research, as many of you already know.  I got the name & number of Dr. Richard Chang, Interventional Radiologist (who does some of the AVS procedures at NIH), thanks to John (in our forum).  When I called Dr. Chang’s office at 301.401.0256, I first spoke with an assistant named Micheal Walters who was very kind and encouraging.  Dr. Chang soon called me back and asked me to email any and all records.  I did just that and he forwarded them on to the other endocrine doctors who reserach and treat PA there at NIH.  One of those doctors is Dr. Lyssikatos, who contacted me just today.  He asked me to order my CT abdominal scan as well as the AVS CD.  They want to view those before advising me on whether or not I might be a candidate for surgery or repeat AVS.

Dr. Lyssikatos advised that one must be off Spironolactone  2 1/2 to 3 months prior to AVS!!!  I was only off 1 month!  Eplerenone is only 4 weeks discontinuation before AVS. He also told me that the Metaprolol my cardiologist placed me on, prior to the AVS, affects Renin levels. 

The downside to using NIH is that you are have to pay for a plane ticket and if anyone comes with you they will have to rent a hotel & pay for their own food.  Everything else is paid for.  I wouldn’t normally trust a government funded facility (the VA comes to mind) but I’ve done my research and thanks to many in this forum, I feel very confident that NIH has probably the most experience doing these procedures.  Dr. Chang told me he generally does an AVS 1 x week.  Also, if you have complications after the surgery after you’re back home, you’ll need to make arrangements ahead of time with a surgeon or endo who is willing to do followup care.  The upside is the great treatment you will receive while there (massages – oh yeah!).  They don’t toss you out of the hospital the next day after surgery, as so many hospitals do.”

 

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