Really, can u send me a PM (private message) as to which Dr that is, if that is the case, the name should not be on our list as the names are to be helpful....
I know there is a Dr up around Orlando....I do not know the name off the top of my head but I know it is on the list. And I know there is one in Miami....outside of those two, I am not familiar with NS's for Chiari in FL.
I had to go out of state and for me it was the best thing as there were no Chiari Drs in PA that were easy to get to, (1 5 hrs away) when I could get to NY faster and knew they were tops in this condition.
I have seen that list. One of the Doc on the list for Florida I have read that he is listed as being a Chiari Specialist but will send you to someone else to get help with Chiari. And the doc he sends you to knows even less. We have found one a neurosurgeon's office that see patients all the time for Chiari but I still want a second opinion. I am to the point of taking my son out of state. I am just not find any great info on anyone in the State of Florida.
Hi and welcome to the Chiari forum.
I am not aware of that Drs name, but we do have a list of Drs the members have been to, treated by and liked. See the Health Pages
http://www.medhelp.org/health_pages/Neurological-Disorders/DOCTORS-LIST-FOR-CHIARI-SYRINGOMYELIA/show/1062?cid=186
Deff get an opinion from a few other Drs and educate urself on ALL the testing that should be done B4 surgery is considered.
Try and relax, know u r not alone <3
My son was just diagnosed with Chiari type 1. I took him to All Children's Hospital in St. Pete. He was seen by Dr. Carey. Has anyone had any experience with this office? He needs to have surgery and I am freaking out. I am worried to have this done by the incorrect doc. we live in the Tampa area.
I traveled from Fort Pierce / Port Saint Lucie area.
Honestly, Dr. Fletcher was low key, informative, very helpful, and seemed quite knowledgeable about CM, SM, and related conditions. He also came across as very thorough with his patients. I posted the link to the recording of the webinar on here when they posted it, but I'm not sure if it's still up or active. Here is the link that he sent to me directly:
https://memorialhermann.adobeconnect.com/_a976765836/p4jt9sroatc/?launcher=false&fcsContent=true&pbMode=normal
You can watch that and maybe get some more information about the conditions and him as a physician!
Best wishes,
Annie
Thank you for getting back with me. Where did you travel from to go to Dr. Trombly. I was able to get an appt. for my son with him in a few weeks, but am still trying to get an appt with Dr Uribe since he is closer. What was it about Dr. Fletcher that you liked? I go on line and check reviews and if there is negative input, I go on. I just wanted to have something lined up and I don't mind if we have to travel or go to multiple specialists. I would like to find the best of the best if at all possible since my son's symptoms are so complex.
I have been seeing Dr. Trombly since January 2012. He does have experience with Chiari and syrinxes and all the patients I met in his office had excellent results. He had to perform an aggressive decompression on me in March 2012. The MRI looks good and the syrinx width has lessened slightly. I had no pseudomeningeceles or infection, or any other omplication that would require surgical intervention... just a difficult recovery. He has been a bit confounded by me, unfortunately, because I still have significant pain, numbness, dizziness, fatigue, etc. some symptoms are gone and some are reduced. Overall, I am pleased with my experience with Dr. Trombly. Just be mindful that his staff is not as great. I had difficulty reaching them after hospital discharge. They did not send me home anti-nausea medication, even though I requested it. I spent over 48 hours vomiting severely before we were able to reach the nurse at the hospital, who called in meds for me. My husband and I believe that period of vomiting is what led to my recovery difficulty and lingering issues. Also, he did not seem that concerned with related conditions, though he did seem knowledgable about them. So there are definitely pros and cons to consider. One great thing, though, is that he never made me feel rushed, uncomfortable, or insignificant. And he never made me feel like he did not believe me. I did see several doctors who completely discount Chiari and syringomyelia; Dr. Trombly is not one of them. He freely acknowledged the complexity of these conditions and how they effect each peron differently. I am concerned about my own children having this and he has discussed it with me before, even offering to see them if I was that concerned. I will absolutely trust him with my kids should the need arise. If I had a choice, I would take them to Dr. Fletcher in Texas, but that's too far or me ;) Dr. Trombly is far enough!
I'm happy to answer any other questions, I just have a difficult time trying to remember and think of wht I should say...
Best wishes,
Annie
Hi Annie, How long did you go to Dr. Trombly and did he help you? He has some good reviews. I'm really new to searching for a neurosurgeon experienced with scoliosis and syrinx issues. Does he have a lot experience with treating patients with these conditions? Should be searching for a doctor who strictly specializes in syrinxs?
Thanks,
Nicole
Thank you for your inputs. I really appreciate it. At this point I am waiting on the ortho's reports and extra MRI disks. The doctors want a copy to review before an appointment can be made so for right now I am going to be sending a copy to the Chiari Institute and to Dr. Uribe. I will check on the reviews of Dr. Trombly. Hopefully we can start to put all the puzzle pieces together and come up with a plan so my son can start feeling better.
Hello! I have a syrinx the length of my thoracic spine. I also have scoliosis - spinal fusion in 1997 at 52 degree C curve. Had to have the hardware removed in 2000. I now have 2 moderate curves, approximately 34 degrees and 28 degrees. I'm crooked where I should be straight and straight where I should be curved ;)
I have Chiari as well - had decompression in 2012.
I saw Dr. Ryan Trombly in Miami who also studied under Dr. Green. I am not familiar with Dr. Uribe, though.
Best wishes!
Annie
Yes, I went to The Chiari Institute in NY....reviews will be good and bad....I did not put one on the site as I tell everyone I had a great experience....and there are several Drs there and mine was great so I can not speak for all of them or if neone else would like the Drs I saw as much as I did, the only thing u can do is visit a few and compare them to see which one is best for u...as u have to feel confident and comfortable with ur Drs.
Do you go to one of the specialists on the list? How are the reviews for the doctor you go to?
Sorry I do not recall...only that my Dr said it was mild....
No, I was scheduled for the release and my Drs felt I would benefit more at the time from the decompression....it is only lately I am seeing a need to revisit the possible release surgery...
Did you get any type of treatment for the tethered cord. What are the curve dimensions of your scoliosis if you don't me asking?
Hi and welcome to the Chiari forum.
I am not familiar with the name, but Dr B,Green I am aware of...so all u can do is check our list to see if the name is on it, and educate urself and see if u like this Dr....not only should the Dr be experienced and well informed on ur condition/s but u should also feel comfortable/confident in them.
I do have tethered cord with mild scoliosos...I also have EDS and Chiari....no syrinx tho.