khudsonwv Posted June 1, 2004 Report Share Posted June 1, 2004 I am seeing a specialist in West Virginia at this time - but because I have severe reactions to the medicines he is using for his studies - he is kind of at a loss for what to do for me... my cardiologist is recommending i consult with another specialist and i would like to go to Nashville if possible. I have family there and I have traveled so much over the last two years that it would be nice to go somewhere I am familiar with. Does anyone know the names of any of the physicians at Vanderbuilt??? I know that they are doing some research but cannot seem to come up with a name for my cardiologist to contact.. any help would be appreciated.... Quote Link to comment Share on other sites More sharing options...
Aprilmarie52 Posted June 1, 2004 Report Share Posted June 1, 2004 they have an autonomic dysfunction center website at vanderbilt. If you go to the main website www.vanderbilt.edu and do a search for autonomic dysfunction it will bring you to the site. I think that there is a list of drs as well as info about the center. I hope this helps. Quote Link to comment Share on other sites More sharing options...
metoo Posted June 1, 2004 Report Share Posted June 1, 2004 The link below will take you to the list of Dr names in the autonomic clinic at Vandy.There is also links on the page to current research trials and other info.They do have several trials currently,if you click on patient infomation link it will take you to a form to email to see if you qualify.I hope this helps.Good luck! Melaniehttp://www.mc.vanderbilt.edu/gcrc/adc/faculty.html Quote Link to comment Share on other sites More sharing options...
Dawg Tired Posted June 1, 2004 Report Share Posted June 1, 2004 I went to Vanderbilt last Sept to participate in a study. Everyone was very nice and the whole team was concerned about helping me. Best of luck, I hope you can get help there. Quote Link to comment Share on other sites More sharing options...
Merrill Posted June 1, 2004 Report Share Posted June 1, 2004 The doctor you want to see at Vanderbilt is Dr. David Robertson. I was told by the head of cardiology at Johns Hopkins that Robertson is THE leading researcher in this field. I spoke with him by phone; he was sooo kind and generous with his time. Dr. Low at Mayo in Rochester was also recommended to me, but hey, he's not in Nashville! Good luck; I hope you can get in to see Dr. Robertson. Quote Link to comment Share on other sites More sharing options...
khudsonwv Posted June 1, 2004 Author Report Share Posted June 1, 2004 thank you all for the information - i will pass it on to my cardiologist - and he can contact Dr. Robertsons office to see if he would agree to see me... thanks again Quote Link to comment Share on other sites More sharing options...
ethansmom Posted June 1, 2004 Report Share Posted June 1, 2004 Hi! I live in West Virginia too...and am traveling to Charlottesville VA to see a new specialist at UVA in August- you must be in southern WV seeing Dr. Hoeldtke? I'm sure I spelled that wrong, lol!! If there is another doc in WV I would love to know Quote Link to comment Share on other sites More sharing options...
Deb Posted June 1, 2004 Report Share Posted June 1, 2004 Hey Jessica, I live in Charlottesville. Well, 23 miles away. Who is the doctor you are going to see? And, maybe we could see each other while you are here? Quote Link to comment Share on other sites More sharing options...
khudsonwv Posted June 2, 2004 Author Report Share Posted June 2, 2004 Jessica - i live in Saint Albans just outside of Charleston - its about a 3 hour drive to see Dr. Hoeldtke - scheduled to see again in september but my cardiologist recommended seeing someone else just to confirm everything. Inititially referred to Charlottesville too - to a Dr. Burns - but i had a really bad experience there with the cardiology department ( thats were i had my ablations last year and it is just really hard for me to go back - i know that sounds stupid but i just can't get the nerve up to go back - its a shame -----it is an awsome town - i was there for a few weeks and they have the most awsome food and the shopping is good too. i have heard really good things about Dr. Burns. Unfortunately Dr. Hoeldtke is the only one here in WV.. have you seen him too???Kimberly Quote Link to comment Share on other sites More sharing options...
lalalisa Posted June 2, 2004 Report Share Posted June 2, 2004 Jessica and Deb,Hi, I'm from Harrisonburg, VA - I live in KY now though. When I go back to visit my family I'd like to see your Dr. in Charlottesville. What is your Dr's name? What type of Dr. is he/she? What do you like about him or her? Thanks for the info! It's a small world! I LOVE Charlottesville!Lisa Quote Link to comment Share on other sites More sharing options...
goldicedance Posted June 2, 2004 Report Share Posted June 2, 2004 Kimberly,I travel 5 hours from Washington, D.C. area to see Dr. Hoeldtke. We must both have been driving him crazy with our ablations and their effects on POTS, So far, I am responding to Octreotide. Perhaps our paths will cross in Morgantown! Quote Link to comment Share on other sites More sharing options...
ethansmom Posted June 2, 2004 Report Share Posted June 2, 2004 Deb- That is awesome! I would love to get together. UVA just called today to inform me that they will need to change my appointment to September though, so I will have to see what happens with that Kimberley- I have not seen Dr. H but he is the only one I know of in WV. I got a really bad impression from his office staff when I called to try and set up an appointment, so I just told them that I didn't feel they could meet my needs and moved on with my doctor shopping That's how I ended up at UVA, but I've never been there so I don't know if this doc is going to be helpful or not. I've heard some good things so I am hopeful!! His name is Dr. Phillips and he is a neurologist. Lisa- I live in Charles Town but was born in the Morgantown area (although I lived most of my life in FL, somehow I ended up back in WV). Quote Link to comment Share on other sites More sharing options...
Deb Posted June 3, 2004 Report Share Posted June 3, 2004 Jess and Lisa,I've been seen by Dr. Phillips! He is so gentle and kind. He actually held my hand while he was talking to me. He isn't new, though. He's been there quite a while. He heads the neuro lab which is where I first met him. I really like him. I've heard someone comment that he wasn't very friendly, but I found him to be the opposite. He's quiet and soft-spoken, and definetly knowledgeable.Jessica, I work at the Medical Center, so I could even meet you there. Send me an email and let me know when you'll be coming, and we can make plans to meet! Quote Link to comment Share on other sites More sharing options...
lalalisa Posted June 3, 2004 Report Share Posted June 3, 2004 Deb and Jessica,Thanks for the info - I'll look into possibly seeing him.It's such a blessing to connect with others with the same symptoms and also network to help find Dr's.Thanks again,Lisa Quote Link to comment Share on other sites More sharing options...
ethansmom Posted June 4, 2004 Report Share Posted June 4, 2004 Deb,That is so great! I'm glad that you had a good experience with Dr. Phillips, it reassures me that my money may be well spent I have no health insurance so I hope it's worth the trip. I am trying to apply for financial assistance but it seems to be a very complicated process. Anyhow I would LOVE to meet when I go for my appointment! I will let you know when it's coming up so we can coordinate!! It is definitely great to know others who have this illness Quote Link to comment Share on other sites More sharing options...
khudsonwv Posted June 7, 2004 Author Report Share Posted June 7, 2004 Goldicedance - that is so funny that you mention us driving him crazy - he mentioned you (not by name ) when I saw him - he stated that he had another patient with POTS with a pacemaker that lived in Washington DC. We are the only ones that he has that have pacemakers.... weird huh?! My meeting with him was a little unusual. He called me on a Friday (after being referred by my neuro) and stated that he needed to see me the whole next week. Told me to drive up that Sunday - check into a hotel and to not expect to leave for at least a week. Saw him that monday - he did his own tilt test on me - confirmed everthing - tried me on one med- said to come back the next day and we were going to do a video. Came back the next day sick as a dog from the first medicine he gave me. He tried the second and i had an immediate reaction to it - he told me to go back to the hotel pack my bags and he would see me in Sept. - that since i could not tolerate the meds he wasn't sure what to do. He also got sick during my visit and took the rest of the week off. So it was a crazy visit. Very nice man - spent a lot of time with me - but also left me a little confused and concerned that there may not be help for me since i don't tolerate chemicals/meds. Quote Link to comment Share on other sites More sharing options...
Merrill Posted June 7, 2004 Report Share Posted June 7, 2004 Kimberly. Which doctor did you see? (This chain has me confused!) Are you describing a visit with Dr. Robertson at Vanderbilt? This does sound confusing... Quote Link to comment Share on other sites More sharing options...
khudsonwv Posted June 10, 2004 Author Report Share Posted June 10, 2004 Merrill - no - I am referring to my Dr. in West Virginia - Dr. Hoeldtke --- Goldicedance sees him too.... still working on the referral to Nashville - my cardiologist here - Dr. Pettit - has a call into them to try and get me seen there......sorry i confused you - i do it to myself all the time lol Quote Link to comment Share on other sites More sharing options...
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