Cleveland Clinic

[violahen]

Hi Everyone:

It's me, Kristen (violahen). I am a patient of Dr. Grubb's and surely plan to stick with him no matter what. In my mind, he's not only a heart/dysautonomia doctor...he is a HEART AND SOUL doctor. I have never met anyone like him. I am so distraught over his recent illness and pray for his revovery.

However, since he is so ill and is likely not be working in the near future I am thinking that maybe I should take some advice he gave me a couple of years ago. I actually live in Cleveland...about 7 minutes from the Cleveland Clinic. I have never gone to the Clinic for treatment, tests, anything. Dr. Grubb suggested I might get a "back-up" doctor there for emergency situations (which of course, do come up...I have been to the Clinic's ER which was a NIGHTMARE..especially because I don't have a doctor there and they seem to think that they need to start from square one and do their OWN diagnosis...and of course the ER staff know little if anything about dysautonomia. They weren't willing to even CALL Dr. Grubb.)

My concern about getting a back-up doctor is that most doctor's don't seem to have a humble enough ego to be condisered back-up!! I don't want to get into the middle of a power struggle. Does anyone see a doc at the Clinic who they feel would be able to handle a "second-string" type role?

I really don't know what to do about it. I am particularly worried because Dr. Grubb is very ill and I have been on the fast-track towards a crash myself and think I need some medical attention. The thought of even seeing anyone other than Dr. Grubb is so difficult for me because in my mind, he is the only one I trust. After 36 years of being undiagnosed/misdiagnosed Dr. Grubb finally pinpointed my illness. It was life-changing for me. (I'm now 38.) I feel a special bond with Dr. Grubb and have a tough time imagining not having him around...temporarily or permanently.

Blah, blah, blah! Sorry to ramble...I guess I'm just asking if anyone has a suggestion for a back-up doc at the Clinic....

BY THE WAY!, I literally do live about 7 minutes from the Clinic. I mentioned on another post regarding another topic that I would be HAPPY to be the DINET/Cleveland Clinic hospitality chairman/cruise director! If anyone is coming to the Clinic and would like some Clevleand hospitality PLEASE feel free to be in touch with me. I am happy to try to make any visit to the Clinic easier and less scary.

Thanks.

Kristen

[LisaColumbus]

Hi Kristen,

I am in the same place you are right now re: Dr Grubb and the Cleveland Clinic. I am looking for a "backup" just-in-case. No one will ever be able to replace Dr Grubb, he has been a Godsend for my sister and I. I have an appointment scheduled Jan 31st with Dr Fahoud. If anyone has any experience with this doctor, I woud love to hear it. I am also trying to get involved with the clinical trials at Vanderbilt.

Kristen please post and let us know how your appointment goes.

Lisa

[mindylee1]

Hi Ladies,

I understand your situation. However I am a patient of Dr. Grubb and Dr. Stillman (Clevand Clinic - head of neurology) There is no back up. They both work together to treat me. I consider them "my team" I would highly highly highly reccomend Dr. Stillman he is a wonderful doctor. He, is unbelieveably smart and truly cares about me. He has called me 3 times this week to to check in my progress. I leave for Cleveland tomorrow. I will be in the hospital for about a week. The reason was that I told Dr Stillman that I wanted him to admit me. I want him to see my spells, and give me any kind of test that he can. He also said this was a good idea. Now not many doctors would do this. He is the head of neurology and worked with Dr Fouad (Cleveland Clinic- syncope clinic) on my diagnosis.

So I would tell you that there are quite a few good doctors at the clinic. Also don't consider it a back up. Consider it as "your team" . The more talented people on your side, the better off you will be.

Best of luck

Mindy

[ginger]

Hi Lisa and Kristen--

Cleveland was the first place to investigate and find my POTS. That was back in August of 2004. They were wonderful, I thought!

Dr. Lan Zhou, MD, PhD, Neurology was the main doctor I visited. She was absolutely wonderful. And her voice is very soothing. As part of my tests, I also met Dr. Robert Shields in the autonomic lab. He watched over my TTT and seemed to be a nice and compassionate person.

Dr. Zhou specialized in neuromuscular disorders, but gets all types of cases and can get you where you need to be at CCF. If you request Dr. Zhou, be sure to tell her I sent you. I've e-mailed her several times as she wanted me to "keep her updated so she could learn." How's that for a doctor... she wants to learn from me.

Anyway, she referred me to Mayo's autonomic lab as it is closer to where I live. I had trouble getting in to Mayo and sought out CCF as my second option originally. If I hadn't gotten in to Mayo, then I would have gone back for more evaluation with Dr. Shields.

The only downside might be the completeness of the autonomic lab at CCF as compared to Mayo and Dr. Grubb. I would suggest calling and asking questions, lots of questions.

So, long story short, I had positive experience with CCF. Actually, they've been ranked #1 in heart care for over 10 years by US News & World Report. That's a good thing.

Good luck in your search and research

Ginger

[LisaColumbus]

Thanks for your input regarding the Doctors at Cleveland Clinic. I feel much better already After having seen so many "bad" doctors, you tend to be a little suspicious of any new doctor. I am very glad to hear you both has such a good experience.

[violahen]

Hi Ladies:

Thanks for the info. I am going to look into it. Mindy, you said that you were initially diagnosed at the Clinic. How and when did Dr. Grubb come into the picture for you?

Kristen

[MightyMouse]

We come to Cleveland to visit relatives a couple of times a year--we were there in Sept, and will likely be back next month for a wedding. Fun place, easy to get around. Also, the Cleveland Clinic is huge--and has their own on-property hotel.

Nina

[Guest Julia59]

Hi Kristen,

Today I went to my PCP to discuss going to a local neurologist for followup care.

This Doc would also play a second string to Dr. Bolognese my neurosurgeon in New York. I need someone to carefully watch my changing neurological symptoms and to work with Dr. Bolognese.

Right now Dr. Bolgonese is trying non-ivasive treatment first-------but in the last month or so Dr. Bolognese was concerned about cranial settling due to the combination of chiari, cervical/cranial instability, small posterior fossa, retroflex odontoid--AKA-(tilted C1 with pannus deformation), EDS and of course the POTS.

I may very well end up at the Cleveland Clinic also because theres not much in Toledo as far as the type of neurology I need. Maybe i'll call that Doctor Stillman. Or possibly The University of Michigan. I'm only 2 hours away from there like you are two hours from here. I am kind of a host of sorts for visitors who come to see Dr. Grubb over the last 3 1/2 years. I live about 3 MINUTES---or about a mile from Dr. Grubb's office.

I wish this would have never happened to Dr. Grubb. Why do good people have to get sick? I don't get it. On a more positive note he is doing a little better each day. I hope you can get a good compassionate Doctor who will understand your situation.

Julie :0)

[MightyMouse]

Julie, I can't help but think of the book that Dr. Grubb gave me--and many others--Chicken Soup for the Soul. And if you read it, you know that question of yours is pretty universal. One could ask the same thing for every person who posts on this board... why? If you figure that one out then you've mastered the meaning of life my friend! I'm not being sarcastic--I really mean that. I'm not sure we're meant to know the answer to that question...

Nina

Edited January 11, 2005 by MightyMouse

[Radha]

thats nice that are good POTS doctors, but after going to these places and getting all the sophisticated testing and getting the diagnosis, did you come home actually much better than before you left? did it really make a major difference in your quality of living?

radha

[LisaColumbus]

thats nice that are good POTS doctors, but after going to these places and getting all the sophisticated testing and getting the diagnosis, did you come home actually much better than before you left? did it really make a major difference in your quality of living?

radha

<{POST_SNAPBACK}>

I actually did show improvement for about 7 months before relapsing. My sister improved for 5 years before relapsing. I am still hopeful that somehow, somewhere, someone will have the answers; if not in time to help me, maybe in time to help my daughter.

Lisa

[Radha]

if you dont mind my asking Lisa what made you improve? what meds did you take that helped?

radha

[LisaColumbus]

if you dont mind my asking Lisa what made you improve? what meds did you take that helped?

radha

<{POST_SNAPBACK}>

Adderall and Florinef were my miracle drugs. Unfortunately I was later diagnosed with Buergers Disease and am unable to take any vasoconstrictor meds.

[steph37822]

oops

[violahen]

Hi Everyone:

Thanks for all your input on this subject. i bit the bullet today and called the Clinic. I explained my situation exactly. They were actually very understanding and kind. I now have an appointment with Dr. Fouad on Feb. 8...I know that she is known for doing a LOT of testing...since I've been through it all before, I don't want to do it all again...they said as long as I had the results I wouldn't have to again....we'll see.....

I know I am going to crash hard soon. I can feel it. Unfortunately my husband is out of town for the next two weeks and I am here alone with my two young kids. I am trying to take it easy but I'm sure I can stop this one. It's scary to think about not being able to call Dr. Grubb when this stuff starts happening.

Kristen

[Merrill]

Hi Kristen -- being alone for 2 weeks with two young children would make someone WITHOUT dysautonomia crash pretty hard! I hope you're able to call in your resources--friends, relatives, parents of your kids' friends--to help out and give you a break. Hire a babysitter for an afternoon if you can so you can get a nap in, if that's what works for you.

best,

m

[dream02]

Hi Everyone:

Thanks for all your input on this subject.  i bit the bullet today and called the Clinic.  I explained my situation exactly.  They were actually very understanding and kind.  I now have an appointment with Dr. Fouad on Feb. 8...I know that she is known for doing a LOT of testing...since I've been through it all before, I don't want to do it all again...they said as long as I had the results I wouldn't have to again....we'll see.....

I know I am going to crash hard soon.  I can feel it.  Unfortunately my husband is out of town for the next two weeks and I am here alone with my two young kids.  I am trying to take it easy but I'm sure I can stop this one.  It's scary to think about not being able to call Dr. Grubb when this stuff starts happening.

Kristen

<{POST_SNAPBACK}>

Hi Kristen,

You'll be in my prayers for sure! I know how you feel...knowing something's happening but not knowing what or when it will hit...and where to go when it does. I hope it at least holds off until your husband is back to deal with your children as I know that will be one less thing for you to worry about. Stress is definatly not helpful. Best of luck!

Denise