Ans Centers?

[mkoven]

I've posted at length about my recent hospital stay. I have ans issues, eds, complicated migraines, and mega allergies. The upshot of my hospitalization and absence of heart disease, is that I need to be seen at an ans center.

One of the docs recommended Dr. Grubb. My concern there is that it seems that he's booked way out, and I need to be seen asap. If one had to pick between Cleveland and Mayo (or maybe somewhere else??), what would you guys suggest? I'm in Illinois. The main concerns are expertise, quick access, coordination of care across specilaties, and then closeness. Cleveland is a little closer, and it seems there's a good team there. I recently posted to one of their online chats, and got an impressively thorough, quick response.

I'd love to be at a place that puts all the pieces of the puzzle together-- eds, migraines, allergies, cardio, and ans. Right now, my care is very fragmented, and my doctors don't talk to each other. And I'm a mess.

(Even though my cath was clear, I'd like a place that's good at cardio to help me understand what the issue is with my aorta, which the cath found to be "somewhat effaced" at the sinuses of valsalva. I've had multiple echocardiograms in the past several years, all done at different institutions, so it's hard to tell whether anything has changed in the size of the aorta, or if different numbers are just different observers. So I guess I'd like a place where they can look at the different echos and the cath films and tell me what if anything is going on, what's stable, what's not. The doc at NW who did the echo described it as "normal" size at various places-- that seems unacceptably vague, as normal is a range, and one probably wants to know where in the range. and then compare my studies over time. And then if it has gotten bigger, what am I supposed to do, in terms of followup, bp countrol, and activity.)

I've heard that Vanderbilt is more research than treatment oriented.

Thanks!

Michele

Thanks!!

[DADofPotsSon]

I was impressed with Cleveland Clinic, when my Son #2 ended up in ICU for 4 days, the Neuro recommended that we take him to Dr. Grubb at MUO or Dr. Fouad Tarazi at CC. Dr. Fouad Tarazi at CC was able to get us into her schedule in less than two weeks, and Dr. Grubb at MUO at the earliest was 11 months. So we went with Dr. Fouad Tarazi at CC for the first year and eventually made the switch to Dr. Grubb, the reason was 2 hr drive for CC vs. 20 min. drive for MUO. CC did do quite a number of test which helped determine actually what the problems were and really came up with the the plan to get him on the road to recovery. Dr. Grubb has furthered tweaked this plan and treatment which furthered his improvement.

DADofPotsSon

[Ernie]

Hi,

I have no experience with them but I would choose Cleveland because they don't refuse anybody and I have heard good comments about them.

[Guest tearose]

Wherever you choose to go, please just take the energy and time call ahead to be very clear that all you hope and expect to have done will be done!!!

Wherever you go, as long as they have a complete ANS testing/ diagnostic center and they can coordinate between other non-POTS departments while you are there, you should be fine.

I have used Mayo in MN and do feel they coordinate between departments very well. I do have a top notch neurologist there that I am sure is the main reason all things were well coordinated. I have no idea of all they do behind the scenes but they all were on the same page whenever I have been there.

Take your time as you make this important decision.

best regards,

tearose

[mkoven]

I now have an appointment with Dr. Fouad Tarazi on August 14. Wish it were sooner. Don't know if getting a local doc to intervene might help.

in the interim, another er trip. My puncture site got swollen, sore, with bruising all down my leg. It hurt to walk, sit, stand, and even sleep, it ached so badly. So they did an ultrasound to rule out aneurysm. Luckily it's just a nasty hematoma. I'm supposedly past the window, but maybe my eds made me more likely to have this happen?

[ajw4790]

Hi!

I am glad you were able to get an appmt. relatively quickly! A local dr. (like PCP) may be of some help, but it may take just as long to get in to see them. Also, I think you have had some of the same experiences I have had with too many cooks in the kitchen, causing problems with communication and treatment.

Another ER trip, oh my! I am glad it wasn't worse than a hemotoma, but it sounds awful! I would guess that EDS does make one more prone to this type of reaction.

I hope the August appmt will be a useful one, and that you will get some answers and relief!