Cleveland Clinic Diary

[Guest wishing&hoping]

Well, folks, I'm sorry to report that I have not had a good experience at CC. Any testing would be 2 months away. I'm very disappointed!

Signed,

Disappointed

[Monstrosity]

You could try UH but I had a bad experience there. I went back to the CC

Edited February 14, 2013 by corina

[Joann]

I have testing set for April there. Most places have a wait time. Dr. Grubb has a year long wait list and his assistant is 8 months. I figure set up appointments, if you don't need them later you can always cancel them. Unfortunately, I will probably make them all because so far no one I have seen has been helpful.

In the past, I didn't set up appointments figuring I should wait til I found out if the upcoming appointment would give me answers, when it didn't I then had to make another appointment for a longer wait period, so now, I figure go ahead and just set up a bunch. That way when one doesn't work out, I just go on to the next one.

Sad, but true.

[jenniferlynne76]

Wishing and Hoping,

I'm sorry you've had such a disappointing experience. The clinic has been a life saver for me. I started with neurology then went on to syncope and had a diagnosis in less than four days. Over the course of the following month we tweaked my meds and treatment plan and I'm continuing to do well. Not cured of course, but nearly normal which is a huge blessing for me. I hope you won't give up and that they can help you.

-Jen

[Orthohypo]

Jen, could you tell me what neuro there did for you and your diagnosis if you don't mind sharing? I went in through CC cardiology, had a bunch of tests over 7 week period and nothing was wrong with my heart, QSART, blood volume. I am so tired of going to docs I haven't made any appointments with neuro. I passed out on tilt table test at UH a couple years ago and am definitely getting worse even though my family doc has me on the usual meds. I've asked her to try mestinon sine Midodrine isn't helping much. But I'd like to tell Wishing and Hoping that their testing staff was very good.

Edited February 15, 2013 by corina

[Guest wishing&hoping]

Hi,

I d already had a TTT elsewhere that was very positive. Went for treatment tweaking and opinion on my neck problem but found them dismissive and unable to do more testing for months. Getting worse and feeling discouraged and confused re next steps. Seeing Grubb Monday. Also very tired of going to docs!!

Thanks for the encouraging words!

Edited February 15, 2013 by corina

[Guest wishing&hoping]

Wishing and Hoping,

I'm sorry you've had such a disappointing experience. The clinic has been a life saver for me. I started with neurology then went on to syncope and had a diagnosis in less than four days. Over the course of the following month we tweaked my meds and treatment plan and I'm continuing to do well. Not cured of course, but nearly normal which is a huge blessing for me. I hope you won't give up and that they can help you.

-Jen

syncope? not sure what u mean...

[Orthohypo]

What neck problem do you have? Just wondering since I've seen others post here about neck issues. I have a herniated c5-6 disc and others that are bulging + stenosis and "mild" arthritis in the vertebrae.

How long did you have to wait to see Dr. Grubb?

[Guest wishing&hoping]

I went there back in 2008 for evaluation. I had a bad experience. Mayo is a well oiled machine. CC not. Cardiac surgery CC is one of the best. Autonomic eval I could not recommend. Make the 7 hour drive and go to vandy or hop on a short flight and go to Mayo. Just asking for clarification. You saw an autonomic dr at CC but no testing was done?

I'd had some testing before but needed input on neck and spine and genetic issues. Mayo rejected me due to complex GI issues. How do I get an appointment? which clinic? Feeling desperate; on bb's but many other problems.

Thanks! Can't drive anymore, btw...

Edited February 15, 2013 by corina

[Guest wishing&hoping]

What neck problem do you have? Just wondering since I've seen others post here about neck issues. I have a herniated c5-6 disc and others that are bulging + stenosis and "mild" arthritis in the vertebrae. How long did you have to wait to see Dr. Grubb?

stenosis, bulging spurs and arthritis plus instability causing headaches.

Saw Grubb's p.a (Beverly) last year after initial TTT. Sister in Toledo also has severe dysautonomia and sees them. They've been very helpful to her but my pcp srnt me to CC for neurosurgeon opinion. Love UT! also have other artery problems and major gastro issues.

[corina]

Hello all,

you might have noticed we had a LOT of editing to do here. Please be aware that you can't elaborate on a negative doctor's experience at this forum (I'll copie and paste the rules below for you).

The reason for that is that it could open up DINET to liability. So please for DINET's sake AND your own (we really wouldn't want DINET to have to close up due to that) do NOT elaborate at this forum on any negative doctor's/hospital experiences while naming (or obxiously referring to) doctor's/hospitals.

Thanks, Corina

Doctors and Hospitals

You agree to refrain from making disparaging remarks about hospitals or medical professionals on this forum and to refrain from naming doctors or hospitals when elaborating on negative experiences.

Clarifications: It is fine to make a general statement, such as "I had a negative experience with Dr. ____ ," however, per forum rules, statements naming a particular doctor or hospital cannot be defamatory in nature.

Defamatory: "1. Harmful and often (but not necessarily) untrue; tending to discredit or malign."

You may elaborate on negative doctor or hospital visits as long as the particular doctor or hospital is not named, and therefore not defamed.

[jenniferlynne76]

All,

My neurologist at the clinic took a thorough medical history and then scheduled me for blood work, a chest CT (because I has a lot of chest/rib pain for months) and scheduled a tilt table test at the syncope clinic (syncope is another word for fainting, btw...) At 41 minutes into the 45 minute test my BP dropped from 112/72 to 72/35. Needless to say I almost passed out and they put me down. After reading the tilt table test result and examining my history and blood work results (I also had previously had an MRI) my doc updated me every day for almost four days...including over a weekend...until he had a firm diagnosis of POTS. At that point he started me on Mestinon, which I worked up to taking 3x a day (60mg each time). I also take 2mg of Klonopin a night due to severe insomnia. (We tried seven other drugs and a sleep consult before we found something that worked... but he NEVER gave up on me.) My doc also worked with me to get me into an acupuncturist for my neuropathy (both arms/hands/feet) and was supportive of me working with one of the Clinic's holistic practitioners to get me started on other vitamins that might help...and boy have they ever. Especially MetanX (which is prescription only) and Alpha Lipolic Acid. I also take fish oil, vitamin d, and a curcumin supplement. I began seeing a new chiropractor recently too which is helping with the neck and rib pain. In short, my doc is my hero. He quickly helped me identify a proper diagnosis, helped me find the right combo of meds and, best of all, treats me like an individual. Am I cured? No. Do I feel 90% better (or more) than I did 5 months ago when all of this started? You bet! And, best of all, I feel like I have an ally in this fight.

Truly...best of luck to you in finding the right person to help you out. If you are persistent and listen to your instincts I believe it will happen.

All the best,

Jen