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gnomegarden

Dr's At Hopkins Or In Md

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Hello all-- I am wondering if anyone has experience with any docs at Hopkins or any in Maryland that have expertise or even just successful experience with treating POTS?? Dr Rowe at Hopkins is not taking new patients and we are absolutely desperate to find someone nearby who will be interested and able to help my daughter. She is so very severe, and is just so sad. Please post here or PM if you have any ideas for us. Thanks so much.

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Dr Ramesh Khurana at Union Memorial is chief of neurology as well as an autonomic specialist. He treats many people here. I don't know if he takes adolescents but it's worth a call - & maybe tell his assistant that you are desperate/ Dr Rowe's full... I know that Dr Rowe recommends him for adults. I've also heard good things about a Dr Abdullah (sp?) in Virginia. I believe he treats children. Best of luck to you!!!!

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hi -

I saw a Dr. Brinker in the cardiology dept at Hopkins last year - will send you a PM.

Sorry to jump in, but I feel compelled to share :rolleyes: . Dr. Brinker also oversaw Mack's TTT. I feel certain that he is an excellent cardiologist. I know Mack had a state-of-the-art TTT. However, unless things have changed dramatically in the lat 6 years, he would NOT be the one to oversee your daughter's care. His ONLY recommendation for my son was extra salt & water. My son was unable to eat or stand upright at that point. He seemed to have very little idea of how severely this impacts our kids. His specialty is pacemakers, etc- NOT dysautonomia.

If Dr. Brinker has changed his field of expertise & was able to help you, Targs- my apologies. Your experience would certainly be more current. My impression- great guy, but the wrong guy for the job.

Gnomegarden, would you consider traveling to Ohio to see Dr. Blair Grubb or to NYC to see Dr. Julian Stewart? Google them to learn more.

Hugs-

Julie

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I am outside of Annapolis and drive to Media PA to see Dr. Goodkin. He is a cardiologist that has a passion for treating POTS patients (as well as research) becuase his daughter has a very severe case. I would highly suggest him. It is worth the drive. Let me know if you need the contact information.

C

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Thanks for all of your posts thus far. I Have tried Dr. Kurana-- he was our first contact. His intake person said he would not see her due to her age. I have not tried "appealing" that with him. I might get to that :)

I will also look into Dr Goodkin. It is at least a couple of hours from here looks like

We have been traveling to Dr Abdallah in VA for a month and a half, which would be fine if it was working out. But it is most definitely not at the moment. He is very busy and seemingly overwhelmed. While he is so lovely and compassionate, we cannot seem to get any sort of help for her unless we are there in front of him. There is NO communication between his office and any other dr's offices-- which is making it impossible for me to try and get her help at other places. And the trip is so hard on her. It is about 2 hours, and because of scheduling we generally have to leave at 6 am to avoid traffic problems. I know that driving to OHIO might be better-- it is 4 months wait and at least 9 hours. I am trying to make that appointment anyway.

We are here, a stone's throw from ( and employed by!)Hopkins -- "best of the best" and all that-- and cannot find someone to see her. It is sickening. She is so so severe and cannot do anything but lie in bed and suffer. I am watching her diminish in spirit and health with each passing day. I realize that this is not particularly unique for being severely afflicted with POTS-- I am just going crazy sitting here trying everyday to find her some help and meeting wall after wall. Nothing seems to be helping thus far and I am crazy with frustration. How is this all "OK" ? Seems insane to have such sickness and to have to fight so hard to find a thread of help.

I got a letter off to dr Francomano yesterday, whom we are hoping to see for genetics... I am hoping that when she gets back, she may have some ideas for us. If she does-- I'll be sure to share them!!

Sorry to get on a bit of a rant...Thanks for listening. Please let me know if you have any other ideas!

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If Dr. Brinker has changed his field of expertise & was able to help you, Targs- my apologies. Your experience would certainly be more current. My impression- great guy, but the wrong guy for the job.

hi Julie, no need for apologies (but thanks for being considerate!! :) ) -- I agree with you, but wasn't sure whether I could be a bit negative about a doc in the forum itself; hence the PM. To be honest, I wasn't thrilled with Dr. Brinker's "bedside manner" - he was very short and didn't listen very well. Luckily, I only saw him to sum up the results of my TTT. The doc who acted as a sort of go between/referring physician was great (Dr. George Sack) - he is (I think) director of the international program at Hopkins (I was coming over from England, so I was seen as an international patient even tho I'm from the States).

I am eternally grateful in that I finally got a diagnosis at Hopkins, but I agree - they are so busy and distracted. I really had to bombard Dr. Sack with emails and phone calls in order to get things sorted before I had to leave for England.

Gnomegarden - I really hope you find some help for your daughter soon.

all the best,

Shelly

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Can you get out to the Mayo Clinic in Rochester Mn? I have been to hopkins many times and could not get a proper diagnosis there. Other than doctor Rowe... They seem to know little to nothing about dysautonomia. mayo has (and designed) all the the testing and equipment you should have. They took my insurance and now my local doctor in pa helps me... I cannot tell you how valuable my trip there was.

Hopkins is a great place, my friend had a brain tumor removed there, my father had major back surgery... but Mayo clinic is much better.... it is even cleaner and the nurses are nicer ;).

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