Hi, I am diagnosed with chiari malformation type 1 and syringomyelia, and my neurosurgeon recomended the operation, but I am not still satisfied that doing the opertation would be the best decission. I need some help pls...
Hi....this thread is for adding Drs names and retrieving names....I know u r not sure that surgery is right for u, and that could be that u have yet to find the right Dr...take a look at the list of Drs and research them call them ask questions...see a few...
But most of us have surgery to prevent the formation of a syrinx, bcuz once one forms it can continue to grow and eventually cause paralysis. A syrinx can grow very slowly or very rapidly...and there is no way to know which way urs will grow or continue to grow.....and a lack of pain can be an indication of nerve damage...that is the other side effect of having a syrinx, the longer left untreated , u can have nerve damage...which leads to the paralysis.
I had surgery 3.5 yrs ago, I am glad I had it and I had an amazing Dr too....always make sure ur NS is a true Chiari specialist and that they check u for all related conditions and issues.
Thanks for the reply, but I already have the syrinx from c4 to t3. I still am not sure if it's a right decision! Did u have the syrinx before surgery? How many doctors you saw before surgery? Do you it would be a better idea to do the operation in another city? I am super nervous and really confused!!!
No I did not have a syrinx, I had surgery so I would not get one as I did have a CSF obstruction....and was having drop attacks....among many other symptoms.
I saw 3 NS's b4 I decided on the one that did my surgery, I also went to a Chiari conference to get more info on how Chiari and syringomyelia, EDS and other related conditions can affect us and our health.
I went to the Drs I felt knew Chiari best and for me that was leaving not only my city, but the state as well...
It is normal to be nervous, but once u find the right Dr he/she will help u understand all that needs to be done for u and y and once u r confident with the Dr u will be better able to make ur decision.
I saw Dr William Butler in Boston at Mass General and I wanted to share that he is great. He is very matter of fact, he is available to return phone calls (which is something my last NL was not capable of), and he will be doing my surgery in the spring. I know I need to come back after my surgery and recovery time, but I also wanted to get my two cents in before I forgot what it was.
I need a Doctor in Georgia I live in woodstock. I have Chiari Mal Type 1 and I just found out I had it at age 47 and now It's getting to the point I feel like crap all day everyday.. I cant feel my left hand, My neck hurts all the time. and much more. But I cant find anyone..... any info would help. Thanks Sandra
Dr William Butler, Mass General Boston, MA
He's a Chiari Specialist who deals with both Adults and children. His practice has geared more into pediatrics these days, but he still works with adults. I had chiari decompression surgery. His focus is on you, how this affects you, not the disease itself. If you are suffering, then he will operate. A lot of surgeons last resort is surgery, but he really works for his patients. I'm in CT so a lot of my "visits" were over the phone, he's that flexible. If you're in new england I highly recommend him.
No worries....lol...at least now we know...I will be updating the Drs list in the health pages and then starting a new Drs list thread to get rid of all of the posts and compress it all...lol...so once i do that it will say Drs list 2013.
It may take me a few days to get done...but just a FYI to ALL.
Dr. Eric Trumble
Director of Congenital Neurosurgery at the Walt Disney Pavilion at Florida Hospital for Children
He has double-board certification (adult and pediatric neurosurgery)
615 E. Princeton Street, Suite 540
Orlando, Florida 32803
If u do not see the name on the list u can assume that a member here has not seen this Dr or may not have been happy....we only add Drs to the list if we were pleased....
R u referring to U of Penn in Philly? I went there, saw a Diff Dr and his words were I had Chiari but it was above him.....and he had no one to refer me to or suggestions....so, my feelings of the Drs down there was soured.
If u go and have a good experience please share it with the rest of us : )
Dr. Troy Payner, MD IU Health Methodist Hospital
Goodman Campbell Brain and Spine - Downtown Indianapolis
1801 N Senate Blvd Suite 610
Indianapolis, IN 46202
(317) 396-1300 (Office)
Tennessee, University of Tennessee
Dr. William Snyder Jr, MD
1932 Alcoa Hwy Suite 255
Knoxville, TN 37920
(865) 524-1869 (Office)
Hi, I'm in Georgia. I know someone who had her decompression for Chiari and a syrinx by neurosurgeon Dr. Barrow at Emory and she loved him, and she is doing great several years later. Atlanta Neurology, N.P. Brandy Hughes is very kind and helpful for dealing with symptoms. They get you in quickly and get things ordered quickly, too. http://atlantaneurology.net/physicians.html
He is a chiari specialist and he did my surgery. He has been awesome every step of the way and I thought it was important to add him for CT since there aren't many doctors here that are aware of chiari. Highly reccomened him.
WOW I am surprised that u found a Dr down there...do u know how long this Dr had been at Unn of Penn?
I went there 5 yrs ago and the Dr I saw said I had Chiari but it was above him and could not suggest who I could see....wondering if this Dr is new or started after I was there...nice to know there is someone in state : )
BUMP...please add ur Drs name and info if they r not on the list and u had surgery and r pleased with ur NS....also note if the Dr is one that only works on adults, or both adults and children or children only. Thanks
I would love to add a list for Africa, .....but, these lists are compiled by members and who they went to and had surgery by and liked....if the members are not from ur area it is diff to compile a list....I hope u share with us some Drs u find that do know Chiari so we can start one : )
This is for my sister that was involved in a MVA 9-12 She had prev neck surgery for HNP 2007. IncidentIal finding on cervical MRI before surgery. ACM measured 1.2 mm at that time. After the MVA, she immediately had CONSTENT headaches back of her head.. No pain meds will help. She went to see her neurosurgeon,that did the original surgery in 2007. Her Mri of her neck showed the ACM was now 5mm .Neurosurgeon sent her for therapy and shots with pain management dr. She is getting worse!! Severe headache since mva. ER did not even take an xray or do a headscan, so when her neurogsureon quit taking her calls, she went to her family dr. He ordered am MRI of her head and it had progressed to 10mm. She is referred her to DUKE, to Carlos Bagley at Duke spine center . Has anyone had any experience with him?I feel like she is slowly dying and no one will help her. This has been going on for 7mth .Please helpUS! shhensh
It is very possible for a MVA to trigger not only symptoms but progression of the herniation as well.....
I am not familiar with that Dr, but if he knows Chiari, he will or should do a CINE MRI to see if she has a CSF obstruction, and MRI's of her thoracic and lumbar spine to rule out related conditions such as syringomyelia, tethered cord, disk issues, ICP, POTS, ehlers-danlos, sleep apnea....etc...
Do check out our list of Drs and use it as a tool to research Drs/...the list is NOT a referral just a means to help u get started with research,
Chiari is not well known with many Drs including NS's so do not be surprised if the next Dr blows her off too....just educate urself as much as u can so u can help her...and know we r here to help if we can <3
I was diaginosed in Jan ...I live in Lithonia, GA ....Im 44yr old...I researched DR Chitale nd plaan on having surgery 4-19-13. The daily symptoms were unbearable. My neck is stiff daily and the dizziness/off balance are the worst. Then the headaches and fatigue are not far behind. I have been unable to work since early March due to the dizziness. So I took LOA started doing reseaching doctors and decided surgery was best option for me. I will keep u posted
I only see one doctor listed above for the state of Arizona? I went to Barrows Neurological Institute In Phoenix, AZ at St. Joseph's Hospital and saw Dr. Peter Nakaji (who is amazing). He took my Chiari very seriously and treated it with a newer minimally invasive technique. Their former medical director now runs the Chiari Institute in New York, and he referred me to Barrows.
Can you add Dr. Iantosca to the Chiari list? He did my surgery and has done over 400 decompression surgeries... I had no complications after surgery and felt so comfortable with him! Anyone in PA, or anyone even question who a good surgeon is should check him out!!!
Dr. Mark Iantosca
Penn State Hershey Medical Center NEU
30 Hope Dr Suite 13
Hershey, PA 17033
(717) 531-0003 (Office)
Thank u so much for a Drs name and contact info for PA...I just recently heard there were Drs in Hershey that were able to help Chiarians....when I needed one I went to NY bcuz Pittsburg was too far to go.....and I could not find one.
Thanks for the add and I hope u will stick around and share ur experience.
Please add Dr. David Jimenez of UT San Antonio Health Sciences Center to the list. He is a pediatric neurosurgeon who also does adults. He did my 17 year old son's decompression on 3/25/13 and my son is now fully recovered and back to an active normal life, pain free. Dr. Jimenez has done hundreds of Chiari surgeries and is a wonderfully patient, warm and caring doctor, as well as being very talented. He took an hour our first visit to explain everything, and then had my son take 3 hours of MRIs to look for any complications or concurrent conditions. During surgery, his OR nurse reported on status to us every hour. Post-op, he came out and spoke to us for a good 15 minutes about the operation and what to expect. His office was responsive and caring. I cannot recommend him enough if you are within a day's travel to San Antonio, TX.
Department of Neurosurgery
UT Health Science Center San Antonio
David F. Jimenez, M.D., F.A.C.S.
Professor and Chairman
Main Administrative Office
7703 Floyd Curl Dr. (MC 7843)
Medical School Building, 102F
San Antonio, TX 78229-3900
210-567-5625 • FAX 210-567-6066
Hi, I have Chiari malformation type 2 and siringomelia. I've had two surgeries. The first one on Nov. 14-2012, and the last one on July 22nd.-2013. Both of them with Dr. Jose Valerio in Cleveland Clinic in Weston Fl. I think he is a great option for you to add to the list. On this last surgery, I just feel neck pain, I'm still post-op., but all my symptoms due to my chiari are gone. My first surgery didn't work that well due to all the complications I had. On this second one, I'm definitely feeling much better. Hope my experience can help others.
Sorry for not answering before. Yes, I did travel to meet the doctor. Today it's 3 month since my surgery. Even though I had complications, I'm feeling great! I trully recommend my doctor, he is my angel on earth!
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