Dysautonomia (Autonomic Dysfunction) Community
finding a good doctor.
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This patient support community is for discussions relating to Dysautonomia (Autonomic Dysfunction) including: Postural orthostatic tachycardia syndrome (POTS), neurocardiogenic syncope, mitral valve prolapse dysautonomia, pure autonomic failure, autonomic instability and others.

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finding a good doctor.

I'm looking for a specialist to treat my 16 year old daughter for dysautonomia.   Dr Thompson in Pensacola, FL has been suggested to me.  It would be more convenient to see Dr Malamit in Chester,PA. Does anyone have experience with either of these doctors. I need to make a decision.  
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726204_tn?1285879778
Hiya x

I may have only heard of the first doctor you mentioned.  If this is Dr Charles Randy Thompson I have heard he is fantastic.  He has POTS himself, so I think he would have a great understanding.

I am in the UK so am limited in my knowledge of Dr's in the US.  Dinet have a great list of doctors who specialize in Dysautonomia, follow this link and see if you can see any close to you:

http://www.*****.org/physicians.htm#United States

x
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1375380_tn?1278895926
I saw Dr. Fouad at the Cleveland Clinic and it was a good experience for me. Well worth the 9 hour drive from NC.
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I have seen Dr. Kathryn Boehm, who is located in Toledo, OH, since I was about 16-years old. She specializes in adolescents with POTS. Like Dr. Thompson, she has POTS and is extremely understanding- she has never told me that "it is all in my head" or that I am exaggerating or anything like that, which is a common story among POTS patients. She is excellent and I highly recommend her.
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Hi there, do you know anyone in the UK - ie London that specialises in it?

Thanks.
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Dr. Chesire at Mayo Clinic is wonderful! He specializes in POTS and dysautonomia. I have seen him and it is also a wonderful facility in Jacksonville, FL.
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1438638_tn?1304950057
Hi There,
Dr. Julian Stewart is in Valhalla NY (about 30 miles north of NYC):

Center for Hypotension-New York Medical College (Westchester Medical Center)

Dr. Julian Stewart, a physician and advocate who treats children with dysautonomia. This outstanding facility and doctor need more research funding. Dr. Stewart first recognized the existence of NFD, in children, in 1999.

He only treats individuals under 25 much to my dissapointment because it's right in my backyard.  Worth checking out and maybe a drive from PA!  Good luck,
Stephanie


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I would say without a doubt head to Case Western in Ohio to Rainbow Baby and Children's Dysautonomia Clinic run by Dr's Thomas and Gisela Chelimsky phone #216-844-3495. They were the answer to my daughters prayers after some 3 years of illness, beginning at the age of 16 as well.  I am located just 30 minutes outside of Pensacola and never received a referral to our local dysautonomia specialist.  It was well worth the trip!!  
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I am 17 and go to Dr. Jeffrey Boris in Philadelphia. He is amazing. I'm very happy being treated by him.
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I didn't have the same experience with Dr. Cheshire.  I would not suggest him as someone who is really knowledgable about POTS at all.
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I live in the Tampa Bay area of Florida and my husband drives me (9 hrs) to see Dr. Thompson regularly in Pensacola.  I highly recommend him for the right purpose- exploring and considering various treatment options.  He has been working exclusively with Dysautonomia patients for the last 12 years, has it himself, and I am one of his many patients who are so thankful to God that he is continuing to practice despite the fact that he has POTS himself.  That said, he is not your traditional doctor and because he has it himself he sometimes has to cancel appts at the last minute and does not accept most forms of insurance.  I pay out of pocket and it is worth every penny because this is a doc who not only really understands but is compassionate, kind and willing to respond to my texts when my BP drops and will help me get the help I need.

Dr. Thompson is not the guy to go to for diagnostics.  For a full diagnosis workup I would suggest visiting one of the 5. Major med centers that does autonomic testing:  Cleveland Clinic, Mayo (MN location only), NYC Langone, Vanderbilt, or Southwestern in Dallas.  I went to CC and worked with Dr. Jaeger, Dr. Fouad and Dr. Polston - all of which I would recommend for diagnostics only.  Dr. Jaeger sees 20 new Dysautonomia pts a week- so keep in mind he will organize a battery of tests and then send you the results.  I would recommend asking for a follow up appt. Before you go home to review the preliminary results.

The key is to fins a team of good local docs- PCP, cardiologist and neurologist are my local regulars- who are willing to read and learn about Dysautonomia and work with recommendations from out of town folks like those mentioned.  By the way, I'm also looking into participating in the research program at Vanderbilt.  The folks at Vandy seem to be doing the most in terms of academic work, clinical trials, etc.  
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