Neurosurgeons in Jacksonville, FL

[headhurts912]

Hello!  I have been recently diagonsed with chiari 1 malformation.  I live in a small town in south Georgia and will have to travel out of town for surgery.  The nearest large city is Jacksonville, FL.  We have an appointment August 3rd with the Mayo Clinic- but that is so far away!  Are there any other neurosurgeons that you recommend in the Jacksonville area?  Thanks!

[MommyWendorff]

What Dr. did you see?  There is a Dr. at Baptist Medical Center and he is affliated with The Lyerly Group his name is Dr. Canesstra and he is the NICEST NS I have ever met and ive met a few!!!!  Plus I have heard GREAT things about him!!!!  I will be having a back surgery by him soon................After I finish dealing with my childrens chiari and other health issues cause my babies come first!!!!

[selmaS]

  Hi and welcome to the Chiari forum.

The member u replied to is not active at this time, u may want to send a PM (private message) so they get a e-mail notice letting them know someone is trying to contact them.

But, chiari is a life altering condition...and finding the right NS is key.....there is a good NS in NC and one in MD...not  sure how far u can travel....but wanted to let u know.

Do use the list of Drs to do research on the drs to find the right one to help u....so many of us can and do develop related issues post op, like POTS< or PTC...and were not aware of it pre op.

  Also if u were not checked for the related issues b4 hand, it could be those affecting u, not the chiari even tho if may feel like it is.

  Hang in there : )

[lifechanging42]

Hi,had chiari malformation surgery march 2011 an alson live in south georgia just was wonder if you have had surgery yet. I have been considering going to mayo clinic in Jacksonville my surgeon is in Savannah Georgia I still have some of the same problems the surgery is terrible I still have lots of problems.I hope if you have already had surgery you are doing well.This has change my life forever!!!!!!  

[ahedden]

My surgean is Dr. Michael Bucci (phone [phone]) in Greenville, SC.  He is an amazing surgean.  I felt immediate relief as I woke up from surgery.  He has done surgery on many people I know and all of them have had great results.  He even did brain aneurism surgery on two women I know and they came thru surgery with flying colors.  He fused two of my disc two years ago and I have had great results from that.  I'm 45 years old and for the past year or so, I have started experiences pain in my abominal area and found out it is severe bursitis.  About the time I was diagnosed with bursitis, I started having muscles spasms in my back, neck,  left arm, legs and stomach.  I'm not sure if it is steming from Chiari or not, but I think I will check with Dr. Bucci again to make sure  another disc is not causing the spasms.  
I am so thankful I found this site.  I have only spoken to 3 other women with Chiari and it is nice to know support is out there.  

[Debi813]

Are you in Lake City?

[selmaS]

  Hi and welcome to the Chiari forum.

I am confused that ur DS would have had a PFD surgery and not have chiari....the reason the surgery is done is to enlarge the opening and restore CSF flow. It is the obstruction of flow that usually can be a cause of a syrinx.

May I ask what part of his spine is the syrinx?
Have they considered a shunt?

  "selma"

[lesmith_fl]

My 9 yr old son has been diagnosed with syringomelia. He has had two surguries (posteria fossa decompression and one for a tethered spinal cord) he has no chiaras.  He is also adopted, (at 18 months) so I don't know his history before that, but he has had no back trauma since he has been with me. He does have hemi-atrophy and scoliosis, but no apparent reason for the syrinx.  He doesn't have any outward symptoms except some dull reflexes on one side of his body. He just had a follow up MRI today, a year after the last surgery, and the syrinx in unchanged.  Any words of wisdom from anybody would be most welcome.

lesmith-fl

[MommyWendorff]

Who are you seeing at Mayo Clinic??  There is a Dr. Ricardo Hanel who is a NS there and he is AWESOME!!!!!  I absolutely love him!!  My son has chiari as well as a disease called moyamoya disease and needed a surgery to correct it and he was awesome.  HE is an awesome Dr. and has the ability to work on kids and adults and i love that about him!!!!!  If your appt is not with him try to see if you can get in with him because you will love himlll He is from Brazil and I loveeee his accent lol

[sleepypea]

It was my NL that ordered all of the test. I had a full spine MRI from brain to Lumbar to rule out TC and Syrinx. The CINE MRI was just done of the brain. I was void of flow in the 4th ventricle. That is a very contoversial finding (Just my luck) some NS don't think it's a big deal while other's do. Once I got in to see the NS he really didn't do much but say "here's what you have. You have what's called Chiari Malformation. If you believe your symptoms are severe enough that would benefit from decomression surgery then I will preform it. It's completely up to you".... I chose not to have him to that just yet because I really would like to be seen by a true specialist. I do not have a syrinx or as of my last MRI I didn't. I'm miserable everyday, but when I find that right Dr. I know in my heart I will JUST KNOW that's the one (:

[DarthMom]

My NS orderded my CFO Flow Study Neg Cervical MRI With W/O Contrast I have a C2C3 Syrinx that has doubled in size. Findings suggest that they Rule out TCS I mispoke earlier I have  Ehlers-Danlos syndrome And rule out myelomeningocele. What did your NS do exactly???

[sleepypea]

Hi, I am also close to Jax. just about an hour to the west. Let me know how your appt. with the Mayo clinic goes. I have been on a never ending journey to find a specialist in this State since Oct. 2010 and haven't had much luck. The Mayo Clinic wouldn't accept my Ins. There is a specialist in Tampa and also Dr. Green in Miami. I did get seen by a NL who ordered the CINE MRI (flow study) and then a NS at Shands at UF. I wouldn't consider the NS a specialist in Chiari, but at least he did know what it was and offered to do my decompression surgery which I kindly turned down for the moment. Sure hope the Mayo Clinic is a hit for you so you won't have to travel so far, but unfortunately from the reviews I've gotten from other patients Dr. Green is about as good as it gets for this area.

[selmaS]

  Hi and welcome to the Chiari forum.

Not all of us will have a true chiari specialist near us and will have to travel...it is best to try and find a NL close to home to  help with post op care. We do have a list of drs that was compiled by the members here  with the names of their drs and only if they liked them,...not all may be true chiari specialists and u do need to research all drs.http://www.medhelp.org/posts/Chiari-Malformation/LIST-OF-CHIARI-SPECIALISTS/show/1503562

  Dr Barth Green is in Florida and may be ur best bet or Dr Rosner in NC.

     "selma"