Chiari Malformation Community
LIST OF CHIARI SPECIALISTS
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This patient support community is for discussions relating to Chiari Malformation and Living with Chiari Malformation.

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620923_tn?1413427272

  Hi, is this a Chiari specialist? I am asking since u r not a member of the Chiari forum here.....

What surgery did u have done? From what I have read, he is part of an epilepsy  clinic....????
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Where is the list of doctors
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620923_tn?1413427272

  If u click on the link and not the last name that viewed this thread u will see it....it is also in the Health Pages...
http://www.medhelp.org/health_pages/list?cid=186
so if u see this scroll back up ......

or just click on this link it should take u to the top-

http://www.medhelp.org/posts/Chiari-Malformation/LIST-OF-CHIARI-SPECIALISTS/show/1503562#post_8506881
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  U have to use the back page....seems I have to make a new thread as this one is getting very long.....
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Is there a doctor in the San Francisco Bay area that is adept at doing decompression surgery?  Thanks Red
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620923_tn?1413427272

  I am not familiar with where the ones listed are near as I do not know CA...u have to look at the ones listed for CA and see.....sorry I wish I knew that area.
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620923_tn?1413427272

  BUMP..to see the Drs page go back to page one....or go to the Health Pages....
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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...
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620923_tn?1413427272

  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.
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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!!!
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620923_tn?1413427272

  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.
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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.
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620923_tn?1413427272

  Is this a NL or a NS?
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Dr. Fuchs at Duke university was my surgeon and i loved him, i am 10 months post op. he is a ped. neurosurgeon
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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
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620923_tn?1413427272

  Hi and welcome to the Chiari forum.

The list has one Dr in ur state, and the name being on the list is not a referral u still have to research the Dr...and u may have to travel out of state to find the right Dr for u....

I was 48 when I was dx'd, and I had surgery 2  months b4 I turned 50....so u r not alone in how u feel....

Take ur time finding a Dr and make sure all related conditions r ruled out and a CINE MRI is done.

GEORGIA

Dr.  Vidyadhar Chitale
Marietta
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620923_tn?1413427272

  I forgot to mention here is the listing of Chiari Drs  for Georgia....
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620923_tn?1413427272

Hi...in order to see the full list back page to page one or go to the Health Pages and see the list there.

http://www.medhelp.org/health_pages/list?cid=186
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  Click on the back page arrow to page one to see the main list or go to the Health Pages
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  Click on the back page arrow to page one to see the main list or go to the Health Pages
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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.
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He's my neuro too    :)  I just put him on this list.  Small world!!  
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Wow, selma - I never saw your response. Sorry!
He is a neurosurgeon.
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620923_tn?1413427272

  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.

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Dr Anthony Capocelli has moved from Ft. Smith.
He is practicing now at OrthoArkansas in Little Rock, AR.

Chiari specialist - trained at Chiari Institute.
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620923_tn?1413427272

  Thanks Abby for this update : )
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Nicholas M. Wetjen, M.D.
Mayo - Rochester, MN
Departments:
Neurosurgery & Pediatric and Adolescent Medicine
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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
Phone: 407.236.0006
Fax: 407.236.0007
http://www.neurosurgeons4kids.com/
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Has anyone gone to Dr. O'Rourke at UPenn?
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620923_tn?1413427272

  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 : )
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620923_tn?1413427272

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620923_tn?1413427272

  U can add ur Drs name here after u r post op and feel ur Dr is a Chiari specialist or u found a Dr that is well informed on Chiari....we will add the name to the list if the name is not already there.

Include contact info for the Dr.

Thanks
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4816750_tn?1368808270
Here is my doctors information:

Indiana
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)
http://www.goodmancampbell.com/faculty-and-staff.cfm/staff/22
http://www.iuhealth.net/portal/IUH/findadoctor?paf_gear_id=6900001&paf_dm=full&paf_gm=content&task_name=displayBio&contactId=3101

Tennessee, University of Tennessee
Dr. William Snyder Jr, MD
Neurosurgical Associates
1932 Alcoa Hwy Suite 255
Knoxville, TN 37920
(865) 524-1869 (Office)
http://www.healthgrades.com/group-directory/tennessee-tn/knoxville/neurosurgical-associates-97241d17

These are the best doctors I have eer dealt with.
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620923_tn?1413427272

  Thanks for the add Frankie : )
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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
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CONNECTICUT

Dr. Michael Diluna
Yale New Haven Hospital

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.
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Thanks for the Add : )
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Dr. Donald O'Rourke
Hospital of the University of Pennsylvania
Philadelphia, PA

Great doctor for diagnosing Chiari and performing surgery!
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620923_tn?1413427272

  Hi and welcome to the Chiari forum.

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 : )
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Please, who was your amazing doctor. I so much would like to know the name
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620923_tn?1413427272

  I went to TCI in NY, and I had Dr Salvatore Insinga....he was a very nice and caring man and shared info on Chiari so I understood what was going on and how they expected to help me.

U can see all the info in my profile page.....
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  BUMP to  view the list go page to the first page.
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620923_tn?1413427272

  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
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5118767_tn?1363864744
Can we also get a page for south africa please
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620923_tn?1413427272

   Hi and welcome to the Chiari forum.

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 : )
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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
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620923_tn?1413427272

  Hi and welcome to the Chiari forum.

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
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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
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620923_tn?1413427272

  Hi can u add ur surgery date to the surgical date thread so we have it on hand and can post a prayer thread for u.

Congratulations and all the best : )
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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.
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620923_tn?1413427272

  Our list consists of Drs members have been to and liked...and the list is then available for others to use as a tool to research Drs as we do not refer or endorse Drs....

Thanks for the add as I know many in AZ are looking for well informed Chiari Drs.
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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)
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620923_tn?1413427272

  Hi and welcome to the Chiari forum.

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.
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TEXAS

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.

CONTACT INFO:

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
***@****

Clinic Appointments and Referrals
(210) 567-6027
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620923_tn?1413427272

  Thanks for this added info will add to our HP list  : )
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Where is the list of Dr's that specialize in Chiari Malformation
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620923_tn?1413427272

   U r on it....just go back one page...this is page 2 as members are adding to the list so u may find names not on the main list thru out the thread....but click to go to page 1 to see the main list.

U can also go to the Health Pages and review the list there-http://www.medhelp.org/health_pages/list?cid=186
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5911732_tn?1382426710
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.
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620923_tn?1413427272

Hi and welcome to the Chiari forum.

Thank u for adding ur Drs name...did u travel to FL to this Dr?

I am so glad u r doing well , sorry u had to endure a 2nd surgery....may I ask what happened that u required a 2nd?

Praying u have a smooth recovery : )
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5911732_tn?1382426710
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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  Glad to hear u r doing well.....and that ur Dr was such a good fit for u....it is important that we are comfortable with our Drs....

Keep us posted on ur recovery : )
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3147776_tn?1349200103
We're going to close this thread as all docs have been added to the list:
http://www.medhelp.org/health_pages/Neurological-Disorders/DOCTORS-LIST-FOR-CHIARI-SYRINGOMYELIA/show/1062?cid=186

If you have doctors you'd like added, please post in the new thread: http://www.medhelp.org/posts/Chiari-Malformation/-List-of-Chiari-Drs--USA-2013-2014/show/2046186

Thanks!
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