ranting...drs waste of time!?

Ok, sorry…it has been awhile since I posted and this is kinda long….So just to back up and fill those in who don’t know me. Diagnosed April 2009, went to TCI August 2009. Went to Shands/UF in Gainsville, FL yesterday.

Ok…now for ranting…lol…What a complete waste of my time!!! Here is a NS that thinks, oh wait…doesn’t think My chiari is bad enough for surgery…ok not such bad news….right?

Think again this jacka** didn’t even listen to a word I said, just shrugged off my complaints and of course he measures chiari from the opening in the skull. So of course this means my chiari then is smaller to him than to the radiologists.

He also spent about 15-20 minutes with me. That’s it! Did you know you can figure out a persons entire medical history is that time….no questions, just let me talk and only heard what I was saying…didn’t LISTEN!!!

For those who remember…I posted once about no one in the medical field agrees where to measure from. I got reminded of that yesterday. So at this point (depending on who is reading it) I have a 1-5mm herniation with symptoms that  completely stopped my life in April of this year.

But just to let you know that doesn’t appear to be relevant to any of the stupid a** doctors! I went from 900 miles and hour all the time to nothing or occasionally I push the limit when I feel good and then pay severely for it for 3-5 days

Ok people….I am an optimistic person but this is getting  ridiculous! I can’t even get them to tell me what kind of doctor to see about EDS. Some help huh!

If you are near FL don’t bother with Shands or Dr. Murad….unless of course you  are almost dying or have such severe symptoms as to put you in a wheelchair or worse. Because frankly…..I don’t believe we are important, or better yet, “worthy” enough to be treated there.

So now that I got that out of my system…..Now I either have to travel back and forth to TCI for treatment or try again to find a Dr here in Central Florida. AAAAAGGGGHHHH!!!!!

[selmaS]

Hi Sweety...so sorry u had a non chiari dr.....I do know how that feels and trust me, I understand.

A good dr for EDS is Dr Francamono in Baltimore , MD and then u can go to a Rheumatoid dr near u after she assesses u and sets up a treatment plan.

And unfortunately the only dr I have heard members talk about in FL is in the Miami area...Dr B. Green.

I am so glad u were able to vent and know we r always here to listen : )

Depending on ur insurance u may want to try a dr in TN....not sure if it saves time to go there .....and several members have gone and were very happy with their results.

"selma"

[shanmomof3]

Hi! I'm so sorry you had to deal with an non-chiari educated dr! The last time i had to deal with one of those i got up and walked out in tears! Its bad enough that we have to live with this condition but to then have to deal with incompatent drs too is truly unfair! That is why its important to go to a chiari specialist even if you have to travel! JMO  -- Shannon

[cyberpyxi]

I'm seeing Dr. Azra Elkayam in Tampa. He's not an expert, per say... but he's had quite a few chiari's patients, myself included... and he is a GREAT doctor. I don't know what area you are in, but if you're close enough, he may be worth checking out.

The first thing I noticed about his office, besides how nice his staff was, was the signs posted that said you may not be seen right at your appointed time, because he spends a lot of time with every patient. Personally, I don't mind waiting a few extra minutes if it means that he is spending time with someone to help them understand what's wrong with them. I've never waited more than 15 minutes past my appointed time.
He answered ever question I had, regardless of how stupid they may have been, he never talked down to me, and most of all, he ADMITTED that when he got his first Chiar's patient, he had to go learn about it. He researched and read up on it, so he could treat her the way she needed to be treated. That was a while ago, and he's well versed now... but to me, I'd rather a doc that is willing to learn how to treat me. I've had 100% positive experience with him, and I can honestly say that I feel comfortable that he is going to do whatever it takes to give me the best quality of life possible.

I hope this helps. Good luck!

[flcrakar]

I am not far from Tampa at all. Where is this Dr located and would you share his contact information please. I am so disappointed at doctors. I believe most of them have been sucked into corporate america and no longer remember what it is to be a doctor. Thank you for response!

[cyberpyxi]

His name is Ezra Elkayam (I spelled it wrong in my previous post, lol).
Contact info is
11031 Countryway Boulevard
Tampa, FL, 33626
Phone Number:
[phone]

If you're familiar with countryway blvd, he's just north of Linebaugh.

Good luck!

[flcrakar]

I am glad you have a great rapport with him. But I have to say I was not impressed.First, I have an issue with any doctor that comes in the room and starts off with..."OK, here is my magic pill....it can only treat one thing..what is the one thing that you want treated?" He cut me off mid sentance and was more concerned about his own migrane (migraine) that he had for the last 4 days. Then wanted to treat me with antideppresants for my "migrane (migraine)" that I have had for the last 8 months. He also told me that I should just throw out the Chiari diagnoses because it was too small and couldn't/wouldn't cause me any of the symptoms. Didn't even bother to ask me about how this all came about and what other symptoms I am having. He also wanted to know why I brought him "all those papers". These "papers" were the radiology and TCI reports.

Oh well....just add him to list of people/Drs that,...."just don't give a s**t"  Maybe he was just having a bad day for the tale end of his migrane (migraine), but still, he could have at least shown some interest in letting me finish my sentances and finding out exactly what my collective symptoms are. Back to square one. :-(

I am happy someone has luck with him and my reflection is strictly on him.

[cyberpyxi]

I am in utter shock! I am so sorry that you had such a bad experience with him... and I can not apologize enough that I sent you somewhere where you had such an experience.

[flcrakar]

That's ok....I know it is not your fault. Like I said....maybe it was just a bad day from his "migrane (migraine)" experience. It is not your fault, you can not control other peoples actions.