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Chiari Malformation Community
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Avatar universal

Where do I go from here?

I feel lost. I have a neurologist who has been treating me for migraines with Gabapenten, Razatriptan, and and Topamax. I was diagnosed with mild Cerebellar Ectopia (3mm) in December. I went to a neurosurgeon to attempt to build a team of people as that is what I had read about on the internet, the neurosurgeon ran a cine MRI to find that the majority of the CFS flow is normal, but diminished under the tonsils. The neurosurgeon explained this in a seven to ten minute appointment stated they couldn't help me as I was not a surgical case and that was it. I am three weeks into my first Botox treatment for pain and still waiting for results. I am getting rather depressed as it feels with the chronic pain and lack of sleep that my life is kinda falling to pieces.  I have spoken with my Neurologist about the possible worsening symptoms (dizzy spells, problems swallowing, numbness in hands) and if they are connected to the Cerebellar Ectopia today at my appointment, I was told that the Neurologist didn't feel that these symptoms had anything to do with the cerebellar Ectopia. I asked what would be the next step if the Botox didn't help after my next appointment for it in June or July, and was told that we would have to sit down and discuss it at that time.
3 Responses
Avatar universal
I recommend finding a true chiari specialist.  even neurosurgeons who dont specialize in chiari (as in ONLY treat that and related conditions) arent the best for recieving treatment from.  Those additional sypmtoms are absolutely symptoms chiari can give you.  The best thing to do is seek a specialist and either ask for a referral or go directly to them... my drs refused to beleive theres anything wrong with me beyomd fibromyalgia  (its not fibro.) and I had to bypass my own dr since she wasnt helping me and now I have a consult with The Chiari Institute in NY this week.  Sometimes you need to take matters into your own hands to get anywhere helpful.
620923 tn?1452919248
COMMUNITY LEADER

  Hi and welcome to the Chiari forum.

I have to agree with the above poster...find a true Chiari specialist and have them rule out ALL related conditions as they can also cause many of the same symptoms as Chiari.......

I know this can be frustrating trying to find answers, but having the right Dr is key.....so research them in your area and be advised you may have to travel to get to one that is well informed and experienced.
1 Comments
Thank you, any suggestions where to start my search. I live in western Nebraska so two to four hours away from a few different major cities in Wyoming, Colorado and South Dakota. Or should my search area be wider than those regions? I didn't mean my message to sound down and out,  just starting to get gun shy and worried that the next doctor will be the same.
620923 tn?1452919248
COMMUNITY LEADER

  To date we do not have any Drs listed for your state of Nebraska......none for Wyoming......

We have one for SD-

SOUTH DAKOTA

Dr. Ralph Reeder
Sioux City, South Dakota

And


COLORADO

Dr.Hans Coester
University of Colorado
Formerly
Poudre Valley Health System
970-495-7421
Fort Collins, CO

No need to apologize for how you are feeling....as we all have been there before too.

I went to 3 different Drs and they were similar in how they disappointed me....but I did continue on and found a Dr that I knew was not only right for me but well informed as well as experienced with Chiari and ALL related conditions.....hang in there .
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