Chiari Malformation Community
neurosurgeons
About This Community:

This patient support community is for discussions relating to Chiari Malformation and Living with Chiari Malformation.

Font Size:
A
A
A
Background:
Blank
Blank
Blank
Blank Blank

neurosurgeons

Hello my name is Angie, I would like to ask if anyone here is aware of a Neurosurgeon who takes small Chiari's seriously? I have a 5mm Chiari and Ive been to several doc's who tell me yes, I do have a small one but its insignificant and wont cause my symptoms, even though I have most of the symptoms of Chiari. I went to Alexandria VA and saw a specialist who did tell me yes, this is your problem and you need surgery, so I went to Cleveland Clinic to see Dr Di , a neurosurgeon, and he also told me yes you need surgery and I will do it but before my surgery he became disabled and no longer operates. So here I am, the only doc who would help is gone. Im not sure where to turn now, I just know I don't want to feel this way forever, this is hard to deal with daily and nobody understands  how bad it makes you feel or how hard day to day life is with this. I live on on the east coast if anyone knows of a doc that may help.
13 Comments Post a Comment
Blank
620923_tn?1393294254

  Hi and welcome to the Chiari forum.

If u have a true Chiari specialist they do not look at just the size of the herniation...they look to see if u have a CSF obstruction as well...as surgery is not a cure and not all with Chiari r surgical candidates.

May I ask what symptoms u have?

Dr Di is gone for some time so I am sure this is over a long period of time u r not feeling well and we all understand that as the medical professions seem to move at a snails pace, but this is major surgery and it has risks.

Have u had testing to see if u have related conditions...like syringomyelia, tethered cord, sleep apnea, ICP, POTS, ehlers-danlos?

We have a list of Drs here on this page that u can use to research Drs...not all on the list may be true Chiari specialists ...the list is NOT a referral....

Please ask ne questions u may have : )
Blank
4826017_tn?1359741090
Dr. Nicholas Wetjen from Mayo in Rochester just operated on my Daughter's 9mm Chiari.  He's wonderful.
Blank
620923_tn?1393294254

  Hi and welcome to the Chiari forum.

I am happy that u found a Dr that was right for ur DD and I pray she has a smooth recovery....to add ur Drs name to our Drs list please add it to our list so members have names all in one place to research.

http://www.medhelp.org/posts/Chiari-Malformation/LIST-OF-CHIARI-SPECIALISTS/show/1503562

Thanks for sharing : )
Blank
1645944_tn?1305246937
Dr. Anthony Capocelli in Little Rock, AR is Chiari Institute trained and is on the cutting edge (no pun intended) for innovations in the field of NS related to Chiari.

He doesn't consider the measurement of the herniation because the length doesn't determine the effect on the patient or the flow of spinal fluid. He's at OrthoArkansas now in Little Rock.

I wouldn't use anyone else. My Chiari looked like it was 8 mm, but the MRI couldn't show the whole story. My cerebral tonsils had tangled in my C1 vertebra and wrapped around my spinal cord. You can't take the measurement too seriously. Some people have long herniations with no symptoms, and don't need surgery. Some have small but wide herrniations that compress the spinal cord and block CSF flow. There you go. Hope you find great help!
Abby
Blank
Avatar_f_tn
The Chiari Institute in Great Neck, Long Island, NY.  Dr. Bolognese did my surgery which included decompression and fusion skull to c2.  I, like you, had a 6 mm herniation and was told by many docs that it was "too small" to cause symptoms.  However, TCI took me seriously and did my surgery...my headaches are gone and my tonsils were wrapped around my XI cranial nerve plus blocking my CSF flow.  I am back to work and it has stopped the progressive hearing loss I was experiencing.  TCI has a website with instructions on how to become a patient.  :)
Blank
Avatar_n_tn
Thank you all for responding to my question. This has been a long road for me, I was 18 when I developed severe headaches, 25 when I started have aura's and occasional lose of cordination of left arm/hand, about age 36 is when life changed for me, I had a migraine for 4 months all day and night. I was hospitalized with statis migranosis, my symptoms from that point on were hand tremors, extreme bilateral arm fatigue, pain at the base of my skull down my neck, neck spasms, dizziness, nausia, insomnia, unbalanced, brain fog, memory problems, ear pain and heart beat sound in ear, scalp hurts with burning spots, facial pain and pulling sensation across cheek, twitches and weak grip but what bothers me the most is the weak arms and headache. Doctors offer pain meds but thats just some help, I still have all the other problems and Ive been tested for everything. My symptoms intensified when I passed out and hit the back of my head.
Blank
Avatar_n_tn
When you tell doctors these things, they just say" really, thats so strange" or "what" I saw two Neuro's in hospital and they diagnosed migraine, another said Fibromyalgia and migraine, went to specialist and he said, migraine and he hasent a clue, a surgeon told me "dont know whats wrong with you but you can't feel Chiari symptoms till its at least 7mm. Thats when I decided maybe its not Chiari so thats when I went to see Stuart Stark in Virginia and he spent alot of time with me and tested me in several ways and notice the problem with my hands/arms and even knew which was worse before I told him, Dr. Stark told me it was obvious my symptoms were Chiari and it will be hard to find a surgeon to operate because of size they are reluctant. I thought Dr. Di would be my last hope and he did understand and agree but when he retired I became very depressed and just gave up, nobody will help me and act as if Im nuts because I have such strange symptoms. Lord knows I dont want to have surgery, the thought scares me but the thought of living like this forever or it will become even worse is more terrifying.
Blank
Avatar_f_tn
My NS in NC is a Chiari expert.  I had no herniation yet a couple dozen symptoms, most of which are resolved.
Blank
620923_tn?1393294254

  Hi...I see u said ur symptoms worsened after u hit ur head...u said u passed out...was that something u felt come over u, or were u fine and the next minute u were falling? The reason  I ask is some of us do pass out and feel unwell b4, while others can feel fine and then mid fall r aware they r falling and cannot figure out y or react to stop or call for help....

There is a difference and I was wondering if u knew?
Blank
Avatar_n_tn
I was standing up reaching for the door and lights out...I don't remember anything but waking up on the  floor with double vision and a big knot on my head and a terrible headache...I did feel sick and then vomited.
Blank
620923_tn?1393294254

   At ne point were u aware u were falling? Or did u get that snowy sensation b4 u went out?

With drop attacks u can be very nauseated afterward....I tore the meniscus in my knee and it required surgery....so we can take some nasty falls.

With a drop attack u only go out for a few seconds, and come back mid fall....but u can not respond or react at all....so it is weird to know u r falling, but have no idea y...no trip, no twisted ankle b4...it goes so fast, and then u r just trying to figure it out.

I have had this a few times....and it is scary....
Blank
1475150_tn?1296657216
Sorry to hear that problems you are having.  I had surgery at UC Davis in Sacramento, CA in October of 2011.  I had a pseudomeningocele and tethering at C1 and still felt symptoms.  I sent my records, scans, and list of symptoms to Dr. Oro in Colorado.  He thought he could help me out and in October of 2012 I had a 2nd surgery and I no longer have tethering and I no longer have a pseudomeningocele.  I am feeling much better.  I still have some problems with sensory issues, but overall I am very thankful to Dr. Oro and his staff.  Wishing you the best!
Blank
Avatar_f_tn
Is your daughter a child or adult ? I am interested in finding someone at Mayo. For my 6mm as a consult and testing ..will he see adults? I appreciated any information you have. Thank you.
Blank
Post a Comment
To
Blank
Weight Tracker
Weight Tracker
Start Tracking Now
Chiari Malformation Community Resources
RSS Expert Activity
242532_tn?1269553979
Blank
How to Silence Your Inner Critic an...
Apr 16 by Roger Gould, M.D.Blank
242532_tn?1269553979
Blank
Emotional Eaters: How to Silence Yo...
Mar 26 by Roger Gould, M.D.Blank
1344197_tn?1392822771
Blank
Vaginal vs. Laparoscopic Hysterecto...
Feb 19 by J. Kyle Mathews, MD, DVMBlank
Top Neurology Answerers
620923_tn?1393294254
Blank
selmaS
Allentown, PA
5640779_tn?1375816966
Blank
desertstorm2009
AZ
4816750_tn?1368808270
Blank
frankie_rush
New Tazewell, TN
Avatar_f_tn
Blank
mikeysmom1995
Oxford, MI
992677_tn?1337358095
Blank
ChiariWolf
OH
1891806_tn?1391122637
Blank
hevnw8s
Peoria, AZ