Vanderbilt

[Meliss446]

I was wondering how many of you have been to Vanderbilt and if you would suggest it or learned anything from your experience. I have had POTS for four years now, and am on medication to help me at least function somewhat, but I am still pretty limited in energy and have sort of plateaued. In fact, the last 6 months I have sort of been going down hill. I have a great doctor, but I think he is running out of ideas. I am going to go see Dr. Grubb at the end of April. Anyways, I was looking at some information on Vanderbilt and was wondering if anyone had really been helped by going there. On some other forums I have read some mixed reviews of people's experience. So is it worth it? What does the study involve? And would anything come from it, in terms of benefits for me? Also, can you be on meds when you go? Thanks for your imput.

[Poohbear]

I had a good experience at Vanderbilt and would recommend it to anyone. I would caution you not to expect miracles (if one happens that's great but let's face it....most of us do not have or find the miracle cure at this point).

The study protocols change from time to time. I would recommend you look at their website and submit your records for consideration from them to see if they will take you.

You cannot be on meds if you are accepted as a research patient.

I was there for two weeks as a research patient and I felt both Vanderbilt and myself benefited a lot from the experience.

I would also caution you that if you do get accepted and decide to go, go knowing that you will really not have any follow up. You need your local physicians to carry out any suggestions and orders they make and you need your local physicians to study up on your disorder.

Good luck. Let us know what you decide

[Ernie]

Hi,

I went there for 10 days and had a very negative experience. They did not stand up to their words, I got no report and they never answered my questions. I was treated worst than a lab rat and will never go back even if they pay me a million dollar.

[blackbirdsings]

A very BIG ditto on what Ernie said...I also have a very bad experience there and would not ever go back. My time there was so bad, I left barely able to walk after a few days there. They were not true to their word, I was not treated well, and it was a truly horrible experience.

There are others on here that have gone and had good experiences and benefited from their time there. It is up to you on what you want to do. If you do go, know it may be great or be horrible. There was a formal investigation by the board into the research floor as a result of my treatment there. So things should have changed but beware when you go into it.

I went to NIH mulitiple times and had really positive experiences, benefited, and felt comfortable. I felt safe and comfortable at NIH. They are very honest and true to their word. I was unconscious there and they took great care of me at all times. I always knew what was going on, what might happen, and that I could stop tests at anytime and they would not be upset with me.

You have to go where you are comfortable and where you will get the best treatment/answers.

[Sunfish]

melissa (nice name )-

sorry it took me so long to reply. all in all i have heard a wide range of experiences at vanderbilt. honestly i have heard a wide range of things for just about everywhere. that said, while i of course haven't spoken with every patient, i've heard from at least ten people who have been to vandy in the past 6-9 months or so and all have had generally favorable experiences. so perhaps (hopefully) things have changed for the better.

personally...i was at vanderbilt for 2 weeks this past may and had a generally good experience. nothing is perfect but i am glad i went and under the right conditions wouldn't rule out going back. and it takes a bit between applying and deciding whether or not to go so applying doesn't mean you're committed to actually going.

most of what else i would say pooh already mentioned...particularly that they're not designed for follow-up in the least. if you want to read a LONG post re: my time at vandy giving the blow-by-blow you can check it out at: http://dinet.ipbhost.com/index.php?showtop...bilt+chronicles . the info isn't all the most current not in terms of me but it's pretty on par with what is still current at vandy based on others i've spoken with who have been there recently (including lauren aka dizzy dame who is there right now....she just posted from there in the past few days).

if you have any other questions feel free to PM or email me...

melissa

[Roselover]

Just had to add my two cents worth...

I just got home from seeing Dr. Grubb for the first time. And I was accepted into the Vandy study and was scheduled last November, but it was cancelled because my gasteoparesis was flaring up so badly I couldn't get off all of my meds. ( You have to be off all meds for the two week stay at Vandy)

Now, looking back, I would advise you to see Dr. Grubb first. He is excellent at discerning your particular situation and how Vandy might or might not help. For me personally, Dr. Grubb was able to narrow some things down for me that made the Vandy trip not worthwhile for me... (of course there's always value in participating in a study if you have the ability, but right now it would cost me too much financially and health)

Basically, the tests they would run won't give me more info and the meds they are testing are mostly ruled out for me. And Dr. Grubb had new ideas to try. So for now, Vandy is on the back burner. Doesn't mean I would never consider it again, but I am glad I didn't go through that 2 weeks before seeing Dr. Grubb!

OK.... maybe that's a little more that two cents worth... sorry! But hope it helps. It wouldn't hurt to begin the application to Vandy while you wait to see Dr. G....then you're ready if it sounds like a good idea for you.

Be sure and read Sunfishes journal. It's very informative!

Roselover

[Sunfish]

just a p.s. re: meds at vandy. you have to be off most - but not all - meds. i was still able to take a few GI/allergy/BC meds that don't have any direct effect on the autonomic nervous system (although i'm actually on BC b/c of my autonomic issues). depending on the meds they have to be stopped a certain number of days prior to admission. at NIH i was told i'd have to stop/start my meds twice b/c they now do pre-testing & admission separately; that's not why i didn't go there but it does sound exhausting.

i don't disagree with roselover re: dr. grubb. i pursued vanderbilt after being a patient of dr. grubb's for many years (his wife had been my pediatrician so we go WAY back ) - when he was out b/c of his own health this past year. i'm since back in his care - essential in terms of follow-up for me - and am not sure whether i would have done the vanderbilt thing if dr. grubb hadn't been out of commission. my other docs were at a loss with my rapid progression of systemic problems last year (including my doc at hopkins) and we needed some more expertise. ultimately i'm glad to have had some of the more extensive testing done - both in maryland and at vandy - as is dr. grubb & my neuro & other docs (for various reasons that don't apply to everyone). although they still can't agree on my diagnosis

i learned things at vandy that - as much as i love dr. grubb - were from a different perspective & thus good for me. i wouldn't have/didn't feel the same in years past. there are SO many factors so honestly if i was in your shoes i'd apply/make appts anywhere/everywhere i was interested knowing i didn't have to commit until later. that's what i was doing this time last year and then things sort of took shape...

melissa