Vanderbilt?

[AJVDK]

Hello, For those of you that have gone to Vanderbilt I have a few questions if you could help.

Was ut hard to get in?

Was it worth going?

Did you find out new things or was it about the same as other doctors/stays?

Would you go again if needed?

If you have any any informatin that would help. I am just looking at anything right now to help.

I am not sure If I should just give up and wait and see or try one more place for treatment. I have been to Cleveland, Mayo, and UofI. I found out I have POTS, NCS, Low blood volume, and rapid blood flow, but have not been able to find a treatment that works. I have tried so many meds..... I am just looking for some hope. I aslo think somethins that there is still more going on, as I just seem to get worse. I am now stuck at home. I just want my life back. I am now looking for anything to get better, and to be able to go back to work!

Thanks,

Amy

[Poohbear]

Amy,

I did not find it hard to get in although I did have to wait a couple of months. I have had extensive testing and a very unusual case prior to going to Vanderbilt and my Dr had called and spoken to them directly.

We sent in my records, I completed their form and they excepted me.

I would go again and am scheduled to go again.

If you can afford the trip then I think it's worth going but do go with realistic expectations....you may or may not learn anything new but you will never know if you don't try. Don't expect to have follow up after your visit. You will be followed for a few weeks (at best in most cases) but after that they expect your local physicians to treat you, follow up on their recommendations and paperwork etc.

For me, we didn't find the magical pill so it was a bit discouraging. On the other hand I got INCREDIBLE support while I was there that was priceless. It was so nice to be surrounded by people who truly "got it".

I also hold to the hope that while I may not have gotten personal answers I wanted in the moment, I did participate in a process that will hopefully, in time, help them discover more about this disorder and what does and does not work.

Everyone's personal experience is different, their life circumstances are different and they enter Vanderbilt with different degrees of previous testing, understanding etc. These factors really effect your experience. I can only give you my experience which was a good one and one I would do all over again even though I didn't get the "magical" cure or treatment solution

[Ernie]

Was ut hard to get in? No, very easy. Got accepted immediately.

Was it worth going? No, I could have had the med trials for free here.

Did you find out new things or was it about the same as other doctors/stays? No

Would you go again if needed? Never again.

Since you have gone to Mayo and Cleveland I don't see what Vanderbilt could offer you.

[Sunfish]

i was going to suggest doing a search but when i typed in "vanderbilt" eleven pages of hits came up so i realize that's a bit overwhelming. you can specify to search for things only in the title though and that's a bit more managable. the list of hits for that is: http://dinet.ipbhost.com/index.php?act=Sea...lite=vanderbilt

there have been a lot of discussions so i would definitely suggest reading some of the posts.

here's one of my recent replies (via cut & paste):

"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).

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 am glad i went and would consider going back but it would depend on lots of things. originally i was going to return several months after my original stay (outpatient the second time) and decided not to then (for various reasons) but that doesn't mean i might not later.

re: getting in was not "hard" other than getting medical records gathered to send them. it doesn't happen overnight & it was a bit nervewracking for me knowing that when you go you are still not "officially" accepted until being there for 24 hours but i really didn't have anything to be nervous about.

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

melissa

[AJVDK]

It kind of sounds like it no more then I have already tired here, and at Mayo, and Cleveland. I am just looking for hope. I am just down. Today I was looking at wheel chairs on- line. My doctor and myself have been talking about it, and now I am having alot harder time getting out now as I get tried so easy, so I find I am more "suck" it the house. So I was just looking for sothing to help. I know I am looking and hoping for somthing that may not ever come, I know there is no magic cure, but I don't want to lose hope!

Amy

[Ernie]

Hi Amy,

It is very good to keep your hopes. At the same time you have to accept your reality and adapt to your new life. If you went to Mayo then you were tested for your own needs and your own symptoms. If you go on a research project you are tested for a protocol. They don't try to find what is wrong with you. They try to understanc how this disorder affects people but now you specifically.

I went on research projects because I had no other way of paying to be tested in the States. I wanted to help science but also expected to have help for my own case. If I would have had the cash or the insurance to cover my Mayo or Cleveland they would have been my first choice.

If your motive is altruistic then go ahead but if you expect something new then you will be very disappointed.

I don't want to hurt your feelings but maybe you could consult with a professional to help you deal with accepting your diagnosis.

[AJVDK]

.

I don't want to hurt your feelings but maybe you could consult with a professional to help you deal with accepting your diagnosis.

Ernie,

Don't worry about hurt my feelings. I am in fact meeting with my theapist on Thursday. I am not sure why I am having such a hard time with it. I just want to keep looking for answers that I am not finding. Each day I seem to find a new thing I can't to do. I am just getting down as I am getting to the point I need to get a wheel chair to get out. I just never thought I would get this bad. I also think it play with you head after being mis- dx so many times it took 5 years to get my "pots" dx. But thanks for calling it like it is!

Amy

[Poohbear]

I have to respectfully disagree with Ernie on this issue. I do recognize we all have different experiences though.

I was seen at Mayo Clinic three times (Both FL and MN Locations)...they were good for some things but Vanderbilt was much more willing to discuss my case, my options and try to find a treatment plan that worked for ME. I was at Vanderbilt as a research patient and it is true that there are some test data they don't share with you but my experience was that only one or two things were not shared with me (and that was largely DNA testing). They worked very hard at trying to find a treatment plan tailored to my personal situation as well as looking for clues and evidence that would help all with dysautonomias.

In my experience if I had it to do all over again, I would have started with Vanderbilt. That's not to say I didn't get any valuable info from Mayo because I did but Vanderbilt was much more informative and took much more time with me and answered my questions.

I do think you can never give up hope. There is a fine balance between Hope and facing reality. If you are unsure, you can always send your records in and see if you get accepted. If you do, then make your decision at that time as to whether to go or not.

[Ernie]

Hi Amy,

I know how hard it is for you right now. I have dealt with the same issues myself. I just got my power chair about 6 months ago. It took me 2 years to accept that I needed one.

I have not given hope and I am still looking for answers. I believe that one day I will get a better treatment plan than the one I have right now.

As far as V is concerned, they never answered my questions while I was there, never answered myemails after I left, I never got my reports and I did not learn anything new. I could have tried the meds for free here and it would not have cost me 1,000$ air flight and 2 weeks of my time. Then it took me 3 weeks to physically recuperate and many months to emotionally recuperate (I am sure I am not fully emotionally recovered yet!).

I know how much more risks we are willing to take when we want so much to get better. I am slowly learning myself to choose wisely my doctors.

If your goal is to get a better treatment plan then I would suggest Dr Grubb. I know the waiting is long but it is worth it.

I hope nobody goes through the horrible experience I had there.

[morgan617]

They wouldn't accept me, gave no reason. I assume it's because I had an ablation, so my tachycardia hadn't started back up. It has since then, but now I feel too sick to go all the way across the US to see them. morgan

[blackbirdsings]

I'm with Ernie on this one. I had a bad experience at Vanderbilt that was much like Ernie's and I wouldn't ever go back.

My family filed a complaint. I went to see a new doctor and it turns out he is on the board at Vanderbilt. He wanted to know ALL about what went on and was shocked. He listened to everything, went to a board meeting, brought up the issue and they investigated and changes have been made.

That was after Ernie was there and after I was there. The people on here that are saying good things, went after the changes. So it should be better, but I do not know personally. It's great to hear good things about the place, but my experience was so horrible, I would not ever step a foot back inside.

The choice is up to you and all of us are different. Certainly consider it, but I just wanted to add support and validation to what Ernie was voicing.

[Mrs. Glass]

I just read your post, and like you, I have to find some answers. I am in a place that has no one here who knows anything about this illness. I am on the waiting list for the Mayo clinic in Az. and Vanderbilt is waiting on my medical records from my Neurologist to review my case. I am willing to take my chances. I have been told so many things that might be causing this illness, but no one knows here. So if Vanderbilt accepts me I will be going. I am already saving up the money, and have my bags packed. I would go today if they called me.

Like you, I am not accepting this illness at all. I thought that I had found some peace in it, but I didnt. I see a therapist just to try to deal with it. She told me to just give into the illness and accept it, and do what I can and dont worry about the rest. I have not been able to do it as of yet. My problem is I cant seem to do anything without paying for it. No dishes, no laundry, no cooking nothing. If I try to get up to do anything then I pay for it. Its like my body goes into shock. I am trying to find some kind of craft to do to keep my mind busy, but I also have sight problems and problems with my hands working right, so I am still looking form something to do besides watch tv all day.

Hang in there, you are not alone. If you want to pm me you can. maybe we can learn to accept this illness together. Hope your spirits lift soon. Vanessa