Vanderbilt U dysautonomia clinic -- recent experiences?

[SOC]

Has anyone had recent experience with the Vanderbilt University dysautonomia clinic? How good are they? Can they interpret/treat dysautonomia in the context of ME/CFS? Are there any recommendations about which doctors are especially good or which to avoid?

I'm not looking for ME/CFS treatment from Vanderbilt, just good dysautonomia treatment.

 

[WillowJ]

Dr. Raj is listed as Univ of Calgary, but he mentions his work at Vanderbilt.
http://ednf.org/connecting-dots-between-eds-and-pots

Appears to work at both:
http://www.mc.vanderbilt.edu/root/vumc.php?site=adc&doc=4775

 

[Ruthie24]

They seem to be one of the few autonomic specialty places that has appreciated the connection between ME/CFS and POTS/OI.

On the dysautonomia forum they seem to get mixed reviews depending on who you see. Some have really loved them and others not so much.

I know Dr. Raj was at Vanderbilt but he moved to Calgary last summer I believe. Not sure how he is still connected with Vanderbilt but he does seem to still have his name on some of their research.

 

[SDSue]

Hi @SOC So glad to see you posted this. I'm in the same boat - getting desperate for adequate dysautonomia treatment.

I will PM.

 

[SOC]

Hi @SOC So glad to see you posted this. I'm in the same boat - getting desperate for adequate dysautonomia treatment.

I will PM.

I'm not actually asking for myself. Fortunately, my OI is under decent control. I have a couple of teenaged students who are struggling dreadfully with dysautonomia. Their parents are considering taking them to Vandy, so I told them I'd ask if there was anyone here who knew anything. They are desperate for adequate dysautonomia treatment, too.

 

[Seven7]

20K later! I was told to drink water, compressions stocking, increase the florinef and the only new thing they added was propanalol. If they find a good electro, is better. All I wanted was the testing and make sure I didn't have other issues but they didn't dig anyways.

There is no cure so there is a lot of self management, I tell the doctor when I need to increase my med. And learn to self regulate. I imagine kids is harder.

 

[Sushi]

20K later! I was told to drink water, compressions stocking, increase the florinef and the only new thing they added was propanalol. If they find a good electro, is better. All I wanted was the testing and make sure I didn't have other issues but they didn't dig anyways.

That is about the gist of what I have heard too, yet they also say it depends on the doctor--whom you can't choose!

Sushi

 

[SOC]

20K later! I was told to drink water, compressions stocking, increase the florinef and the only new thing they added was propanalol. If they find a good electro, is better. All I wanted was the testing and make sure I didn't have other issues but they didn't dig anyways.

There is no cure so there is a lot of self management, I tell the doctor when I need to increase my med. And learn to self regulate. I imagine kids is harder.

We're hoping that since the kids have been doing the water and electrolytes and their symptoms are still quite severe, that Vanderbilt will look at the variations of OI and prescribe some appropriate meds that the kids' peds doctor isn't willing to try. Right now they're not getting much of anything in the way of meds.

Unfortunately, our local medical monopoly "doesn't do dysautonomia" even though they have a big cardiology unit and several electrophysiologists. They only want to do the easy, routine stuff that makes them easy money. If we want decent dysautonomia treatment we have to go elsewhere... and that elsewhere is not easy to find.

That is about the gist of what I have heard too, yet they also say it depends on the doctor--whom you can't choose!

That's my biggest fear -- that they'll make the long trip down there, probably PEMing the kids in the process, and they'll get one of the dumb-ass doctors so it will all be a waste. But all we can do is try, I suppose. Since both the kids' parents are doctors, I'm hoping that will give them a little edge, at least, although I understand doctors don't mind talking down to other doctors the same as they do to us laypeople.

 

[Seven7]

@SOC my understanding there is that what works is not about the type of dysautonomia (which never made sense to me) treatment is trial and error, some people do ok in BB some cannot tolerate, some do ok in midodrine or florinef others do not tolerate.....

I was told that the research clinic as a stay in patient is better (is what my doctor wanted to do but I was not accepted because I was already on drugs).

 

[Sushi]

But all we can do is try, I suppose. Since both the kids' parents are doctors, I'm hoping that will give them a little edge, at least, although I understand doctors don't mind talking down to other doctors the same as they do to us laypeople.

What about Dr. Blair Grubb in Toledo? He used to be "the king" but I'm not sure what is happening with his practice currently.

Sushi

 

[SOC]

What about Dr. Blair Grubb in Toledo? He used to be "the king" but I'm not sure what is happening with his practice currently.

They tried to see him. He was their first choice. He's either no longer practicing or no longer taking new patients, I forget which.