Anyone Been To Any Of These Dr.'s???

[csnell325]

trying to figure out which one to go to for possible pots with syncope issues and such! anyone with any suggestions would be greatly appreciated and dr grubb came highly recommended but he does not accept my insurance so i have these dr.'s to choose from

Dr. Thomas Chelimsky

University Hospitals of Cleveland

11100 Euclid Ave.

Cleveland, OH 44106

216-844-3495

Dr. Gerald E. Grossman

University Hospitals of Cleveland

Department of Neurology

11100 Euclid Avenue

Cleveland, OH 44106-5040

216-844-8925

Dr. Barry DeRan

5705 Monclova Rd.

Suite 204

Maumee, OH 43537

419-897-7611

POTS, NCS

Dr. Fetnat Fouad-Tarazi

Head Syncope Clinic, Dept. of Cardiovascular Medicine (F15)

Cleveland Clinic

9500 Euclid Avenue, Cleveland, OH 44195

216-444-5828

POTS, NCS, PAF/Secondary Autonomic Failure, MSA, Other Autonomic Disorders

Autonomic Laboratory

[Sunfish]

i have seen dr. chelimsky in the past (originally when i lived in cleveland and for a short time after moving away) and had mixed experiences....ranging from really quite wonderful at times to rather disappointing. i don't at all regret my time under his care and he played a huge role in my having the opportunity to try a not-often-used (and VERY time-consuming, EXTREMELY expensive) treatment; unfortunately when i didn't turn out to be a "success story" (after said treatment) his disappointment/ frustration in my continued deterioration seemed to have an inappropriate degree of affect on my continued care. i am still thankful though for the positive role he played in a particular period of my care/ treatment. additionally i know that i am not the only person on the forum who has seen him so you may want to do a search - just use his last name - and you'll find others' experiences (as well as other comments i've made).

the only other physician on your list with whom i am at all familiar is dr. faoud at cleveland clinic, though i have never seen her personally. b/c of the systemic complexity of my health situation and the fact that i was many years past an initial evaluation/ diagnosis, it didn't make a lot of sense for me to pursue seeing her by the time i moved to cleveland. dr. faoud tends to have a reputation - amongst many patients as well as colleagues in the dysautonomia specialty field - as being a very thorough diagnostician (versus investing extensively in ongoing/ long-term follow-up care) and she is a cardiologist, both attributes which are not necessarily negatives but which meant she wasn't the best person for me to connect with at that time in my life; i had already been a patient of dr. grubb's for many years so was already being "covered" so to speak by a cardio/ EP and b/c of the systemic involvement/ complexity of my evoloving medical situation (and per dr. grubb's request) i needed to have a neurologist on board. for this reason i not only saw dr. chelimsky but also saw dr. robert shields, a neurologist at cleveland clinic who isn't necessarily one of the "it" names in the dysautonomia world but who is in fact very well-versed; he is the director of the autonomic testing lab at cleveland clinic and i while no one is perfect, no doctor has all the answers, etc. i had overall good experiences with him and if/ when there is ever a need for me to have an "autonomic connection", so to speak, at cleveland clinic (always a possibility as all of my ongoing nutritional/ IV needs are managed there, it is my "home hospital" for any inpatient care wherein i'm safe enough to make the trip to get there, etc.); i know at least a handful of others who have had favorable experiences under his care as well. i know you didn't mention his name but if he is an option for you insurance wise (perhaps likely since you have another cleveland clinic physician on your list?) i am generally very comfortable recommending him, though if you are someone who has exclusively cardiac-related symptoms with no other components of dysautonomia i suppose it might make more sense to start with the cardio route? (that said i am confident that dr. shields would never hesitate to refer to another specialist if/ when needed.) as i mentioned re: dr. chelimsky i know there have been other discussions/ comments re: dr. shields on the forum so if you're curious it might be worth your while to take the time to do a search (again using his name, either just "shields" or perhaps "robert shields" for a bit less overwhelming results given the more commend word as his last name).

i will tell you that - having been around not just the forum & DINET but the "world of dysautonomia" as a whole for many years - i have never even heard of the other physicians on your list. while this does mean that they are not likely the "top dogs" so to speak in the dysautonomia world, it does NOT mean that they might not be absolutely WONDERFUL. dr. grossman most likely is in the same office/ lab as dr. chemlimsky. dr. deRan truly must be fairly new in specializing in dysautonomia as his address is very close to where i grew up/ lived when first getting ill/ live now (all one in the same, and also just down the street from dr. grubb) and for various reasons i generally have been very aware of any physicians in this area with even a cursory interest in dysautonomia so it actually really peaks my curiosity to hear a new name mentioned. i'll definitely be asking around (amongst my local "dysautonomia connections") and will let you know if i end up with any particularly crucial info for you. all of which is to say though that he might be great. often the best doc is one who isn't the "best" or "top" doc but simply one who has some level of understanding combined with a heartfult interest and the time/ ability to manage ongoing treatment/ care over time (if indeed that is what you're looking for; if you're just in search of a one-time diagnosis then that's another story altogether.)

all of which leads me to a few questions (which i suppose i should have started with now that i think about it ). what are you looking/ hoping for in the doctor you are looking to see? diagnosis? comprehensive evaluation/testing? ongoing treatment adjustments & relationship....either w/ you directly or via your primary care physician? do you have a primary care doc who is willing & able to handle the day-to-day aspects of your care if/ when there is some direction/ recommendation from a specialist? your answers to these sorts of questions are actually quite significant in terms of your decision re: which specialist to pursue. i'll try to check back & reply in kind if/ when you answer as your answers may slant my recommendation(s) one way or another; if i seem to disappear don't hesitate to send me a message as it can be easy to loose track of posts, esp. if/ when the forum gets particularly busy.

last but not least, where are you located? it's by no means the only factor in making the best decision but at times can certainly play a role, i.e. when all else is equal why not minimize travels. as i mentioned i was born in, grew up in, and - after 9yrs away (aside from visits) - have been back in ohio for several years now so i'm quite familiar with the regional medical options - dysautonomia & otherwise - particularly those across the northern portions of the state.

good luck w/ your decision(s) & don't hesitate to let me know if i can help in any way,

melissa