Vandy? Worth A Try?

[mieux7]

Ok, I'm a newbie - not to POTS but both posting to the forum and this particular crash I'm in right now. Lucked out and got on SSDI my second try, so have a little income, but no medical insurance (checking to see if Medicaid will help, it'll be a while before I qualify for Medicare). Was originally diagnosed by Randy Thompson but now am living in the middle of rural Arkansas (long story) and NOBODY gets ANS diseases - especially given my multiple diagnoses which sort of cancel out all the usual treatment options. Meds I've been taking for almost two years are giving me fits and I've got no means to update my testing, see if they need to be changed, adjusted, what.

If I can't get treatment any other way, I'm considering applying for Vandy's inpatient program. I know it's driven by research protocols. I also know I don't present as the typical POTS patient - too much of a complicated mess! - but then maybe that describes all of us.

So my question is: has anybody had recent experience at Vandy? Is it worth a try for me? Got any other advice or support? It's getting to the point I'm almost non-functional and gotta admit it's a bit scary. I thought getting disability was going to be the hardest hurdle. Welcome to the real world of the Big D. Help!!

Thanks to one and all ... and all the best/blessings as well. MStarr.

[stacdliw]

Hi Meri! I'm just now undergoing a full assessment for autonomic neuropathy at Vandy. I was referred to Vandy by my GI due to some wierd symptoms such as severe shortness of breath when walking, obstipated constipation, hypersomnia, severe migraines and a host of other symptoms. When I was diagnosed with AN in Feb. of 2009, I had a full battery of cardio tests and I did not have POTS at that time. Surprisingly, when I went to Vandy on June 30 2010, my heart rate did jump 30 beats per minute and I was diagnosed with POTS.

In addition to the POTS testing, my neurologist ordered a battery of blood tests and QSART testing ( for small fiber neuropathy). I don't receive the results of those tests until my next appointment with the neurologist next Thursday. I definitely believe I am getting a thorough work-up for my condition.

The most important aspect that I liked about Vandy is that they LISTENED and documented everything I said and didn't dismiss any symptoms I complained about. Plus, Vany is extremely efficient. If your appointment is at 10am, you are seen at 10am.

Of course, I am not enrolled in Vandy's research program, so I can't give you any feedback on that aspect of Vandy's medical community. However, if you are feeling that sick, I would definitely contact them and attempt to enroll. You have to be proactive with your health! Call today!!

Good Luck!

Bev

[mieux7]

Bev,

Thanks so much for your input. I'd read good things about Vandy in the forum, but they were a year or so old. I'm with you - you got be as proactive as possible with this crazy disease, though I sometimes find that the more I try to "fix" myself the worse I get! Course I'm operating in the dark at this point. Still, even though we're dealing with different symptoms (aren't we all?), as far as I'm concerned anything that sounds remotely helpful and possible is worth a try. I gave up my "pride" a long time ago, so the worst that could happen is they say no. (Wouldn't be the first time a doctor dropped me like a sack of potatoes. Last one told me she wouldn't fill out the Arkansas "handicapped" form for my car tag because she didn't think I was disabled. This after the Social Security gods had already declared I was!! So doctors that listen and care are real high in my book.)

Thanks again, and best of luck with the rest of your testing/treatment! MStarr

[Angelika_23]

I went to Vanderbilt, not as a research patient though. I had a very good experience. They spent time with me and explained things that no one here did. Vanderbilt is where I was told I am hyperadrenergenic.

Good luck,

Angela

[Crow]

I spent about a week and a half there, total (2 different times) on the research side. You're on a special diet but the food wasn't bad. No caffeine. I think I had to stop meds 3 days beforehand.

I've heard if you volunteer on the research side (versus the clinical) you get in quicker. I think I participated in 6-7 studies.

I blogged a little bit http://goo.gl/kxoH they had a wireless network there at the time.

Let me know if you have any questions.

[Brye]

I live in AR and I drive to Little Rock to see an EP cardiologist. Not sure how in depth you've gone with your testing but he's been helpful for me with continued testing and medication adjustments. His staff has been friendly and helpful! Let me know if you're interested and I'll PM you his name!

Brye

[Kujiforo]

I live in AR and I drive to Little Rock to see an EP cardiologist. Not sure how in depth you've gone with your testing but he's been helpful for me with continued testing and medication adjustments. His staff has been friendly and helpful! Let me know if you're interested and I'll PM you his name!

Brye

I live in Arkansas near Little Rock. Going to EP Cardiologist soon, but I might be interested in this doctor. None of the ones I have seen have been supportive of trying to diagnose me or gracious at ALL really.

[mieux7]

I spent about a week and a half there, total (2 different times) on the research side. You're on a special diet but the food wasn't bad. No caffeine. I think I had to stop meds 3 days beforehand.

I've heard if you volunteer on the research side (versus the clinical) you get in quicker. I think I participated in 6-7 studies.

I blogged a little bit http://goo.gl/kxoH they had a wireless network there at the time.

Let me know if you have any questions.

Thanks, Crow. Sorry it's taken so long to respond, had another major med crash, then was busy yesterday putting together (with much help) a birthday party for my best friend.

I'm gonna check out your blog when I have the energy - to get more details. The special diet part has me concerned since I've got so many food sensitivities anyway (and have to eat gluten free - though I'm sure they can accommodate that). The other thing is stopping my meds. Though I understand why, messing with my meds, including stopping some of them, is what got me into this mess to begin with. Well, not entirely, it's been a stressful year and a half, but I've learned my lesson the hard way. Some of the meds (Clonidine, Florinef) have some pretty freaky SFX, but w/o Clonidine I have rebound hypertension and then get so disoriented I'm walking into walls. No Florinef and I got NO stand time whatsoever. So am trying to get back on them in the proper balance to minimize the SFX and maximize the good efx. Starting all over again scares the bejeebies outta me. ... Then again, maybe something else would be better altogether.

Anyway, sorry to go on and on about that. As I said, I'll read your blog and see how you did. Otherwise, the reports about Vandy all seem to be positive overall.

Take care, MStarr