Florida Chiari Support

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Florida Chiari Support

This group is for any one in Florida who has been affected by Chiari. Patients, caregivers, loved ones, friends and doctors who are looking for support and can give support. We will discuss symptoms, treatment options, doctors, anything Chiari related. The hope is to connect FL Chiarians so we can be there for each other when extra support is needed, transportation, help after surgery, whatever the need may be. Together we are strong!

Location: North Port
Members: 33
Latest Activity: May 16

Discussion Forum

Orlando Nov 20th

Started by Sonya Teixeira Nov 4, 2013. 0 Replies

I'm going to be in Orlando on Nov 20th for an appt. any Orlando area people interested in getting together? Let me know, would love to meet you!

Florida meeting!

Started by Sonya Teixeira Nov 4, 2013. 0 Replies

Good morning everyone!Sorry I've been MIA! Finally feeling up to getting back to my life since my second surgery.I would love to get a meet and greet together sometime soon! The first Sat of the…Continue

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Comment by Tonya J. on May 16, 2014 at 7:46pm
Yay! Please call me if you have any questions. We'd love to have you.
407-209-7147
Comment by Mugsy1919 on May 15, 2014 at 9:03pm

I am probably going to go Tonya.

Comment by Jozy on May 14, 2014 at 11:23am
I would love to. We're having one in Boca too. Im expecting my first grand baby that week!! So we're playing it by ear! Thanks.
Comment by Tonya J. on May 14, 2014 at 6:54am
No problem. We've through hell and back so I try to share resources whenever I can. Are any of you able to make it to the unite@night walk in Orlando? It's Saturday June 21st. Please let me know if you have any questions.
Comment by AnaS on May 11, 2014 at 10:46pm
Thanks for the all the information Tonya J. I truly appreciate it.
Comment by Tonya J. on May 11, 2014 at 3:32pm
Mayo in Jacksonville: useless

Dr. Trumble in Orlando: good and starting to become more familiarized with underlying connective tissue disordes such as Ehlers Danlos. He's starting to do fusions and has been working under an orthopedic dr. Can't think of his name.

Dr. Olivarria & Dr. Gregg in Orlando at Arnold Palmer are great neurosurgeons for Chiari, hydro, tethered cord and instability. Stay away from Dr. Johnson. She has almost killed 2 kids I know very well.

Dr. Barth Green is good for decompression only. He's not very knowledgable about EDS but he is learning. Adults only usually.

Most neurologists are a waste of time however I have found a great adult NL. Her name is Dr. Denise Taylor in Orlando. She's very knowledgable and up to date on the latest clinical trials. She referres to Dr. Hendersons research a lot.

A great pediatric neurologist is Dr. Davis in Orlando.

Stay away from Dr. KAREN Baker, a ped neurologist in Orlando. She tried to talk us out of surgery. She's a big frickin nut and a pill pusher. She made my daughter sicker than ever then said she was anorexic. All that crap she give her made her sick!

All children's is Useless! Beware!
Shands in Gainesville, useless!
The only thing Shands is good for is having a Tilt Table Test for POTS.

The Only knowledgable geneticist we have in Florida is Dr. Benke in Miami. He's a genius!
Comment by Jennifer on May 11, 2014 at 1:37pm
You know I'm gonna ask you to repeat all this right?! Ahaha. :0) yes, I do know a lot of these and a few others need to be checked but so far to date, until dr T. no NS has wanted to do anything but prescribe very expensive, make me crazy drugs! Lol I was VERY surprised at how many doctors and dentists are knowledgeable about Chiari (in the general sense) here in Fl. That was not the case in Mn, it was so bad I stopped seeing anyone but my MD, until I moved here. Now that being said, it has been few and far between to find the good specialists that can deal with this. I consider myself lucky and feel like I'm in good hands because Dr. T went over many of these things. :)
I still like to learn and know about it though, and it is nice to know that other people relate. You guys are awesome!!!Thanks!!!
Comment by Tonya J. on May 11, 2014 at 12:07pm
... some need fusion at the same time as decompression. We only truly have 2 experts in the US. They are Dr. Henderson in Maryland and Dr. Bolganese in NY.
Comment by Tonya J. on May 11, 2014 at 12:06pm
Underlying connective tissue disorder is why most decompressions fail. An expert will rule this out before doing a decompression. Instability Must be checked for. S
Comment by Jennifer on May 11, 2014 at 11:48am
I don't remeber if he did or didn't my I'm having a hard time getting detailed transfer of my med records. I know he punctured the sub arachnoid space, and did not use a dura patch of any kind, c1+ c2 removed. Until I can get a copy of my actual surgical record I cant say for sure. I think I will try my MD or the hospital next because NS not sending or responding.
My current mri shows asymmetric bilateral lateral ventricles, w/ L lateral smaller.
And chiari ectopia 1.7 cm post decomp. Other stuff that i'm not sure if bad or is good like symmetry of temporal horns. Triangular or pointed cerebellar tonsils inferiorly? Just says relates to chiari. Does anyone know of scar tissue will be picked up on mri? i had terrible scarring problems that gunked my intestines together and they didn't know after many tests (though non mri). Wondering if scarring could be an issue here. ?
 

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