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Diagnosed with chiari one with syrinx
Hello,
I am new to this community. I was diagnosed with chiari one malformation
In late 2017. I also have a six inch syrinx on thorasic part of spine?
My first neurologist said I was born with it and well just keep an eye on it as he didn’t think my
Symptoms were that bad. I experience dizziness, slight headaches, pain and tingling in hands and now I’m
experiencing those in my feet and legs. He said those weren’t symptoms of this and yet I’ve read they are. He
is retiring and I will be meeting a new one on July 19th. Quite frankly I’m very scared. It seems I’m
progressing and I’m worried about surgery as I have a young daughter and I’m scared to death that either one
I’ll end up paralyzed or that I will die. I also have a congenital heart condition and had a new valve put in 2011. I’m worriedmy new neurologist won’t take me seriously either and I’d really
Like to see a neurosurgeon. My last neurologist said to wait until I had two sets of MRI’s to compare or else
they might say to just come back. Does anyone have any advice or know any good neurosurgeons in Orange County, CA
or Los Angeles, CA?? If anyone has any advice I’d really appreciate it!
I am new to this community. I was diagnosed with chiari one malformation
In late 2017. I also have a six inch syrinx on thorasic part of spine?
My first neurologist said I was born with it and well just keep an eye on it as he didn’t think my
Symptoms were that bad. I experience dizziness, slight headaches, pain and tingling in hands and now I’m
experiencing those in my feet and legs. He said those weren’t symptoms of this and yet I’ve read they are. He
is retiring and I will be meeting a new one on July 19th. Quite frankly I’m very scared. It seems I’m
progressing and I’m worried about surgery as I have a young daughter and I’m scared to death that either one
I’ll end up paralyzed or that I will die. I also have a congenital heart condition and had a new valve put in 2011. I’m worriedmy new neurologist won’t take me seriously either and I’d really
Like to see a neurosurgeon. My last neurologist said to wait until I had two sets of MRI’s to compare or else
they might say to just come back. Does anyone have any advice or know any good neurosurgeons in Orange County, CA
or Los Angeles, CA?? If anyone has any advice I’d really appreciate it!
COMMUNITY LEADER
Hi and welcome to the Chiari forum.
We do have a list of Drs for you to use to research Drs.....you are right in that you need to find a NS that is a true Chiari specialist....too many Drs do not know how Chiari can and does affect us......
Only more testing will help determine what course of action you will require BUT I had surgery to help prevent the formation of a syrinx so, I feel you may be a surgical candidate....but make sure it is a true Chiari specialist.
The list I will post here is not a referral nor an endorsement of those listed it is meant to be used as a tool to research Drs. The list was compiled by the members here of Drs they have been to, treated by and liked.....
CALIFORNIA
Dr. Langston Holly
Dr. Ulrich Batzdorf
UCLA, Westwood, CA
UCLA/Santa Monica Medical Center
Paul S. Jackson, M.D., Ph.D.
Palo Alto Center
795 El Camino Real
Level 3, Lee Building
Palo Alto, California 94301
(650) 853-2919
Dr. Jorge Lazareff, MD
Ronald Reagan UCLA Medical Center
200 Medical Plaza, Suites 140
Peter Morton Medical Build
Los Angeles, CA
(310)794-7700 Patient appoint.
Dr. Samuel F. Ciricillo
2800 L Street $5
Sacramento, CA
916-454-6850
Be advised you may have to travel to get to a specialist.
We do have a list of Drs for you to use to research Drs.....you are right in that you need to find a NS that is a true Chiari specialist....too many Drs do not know how Chiari can and does affect us......
Only more testing will help determine what course of action you will require BUT I had surgery to help prevent the formation of a syrinx so, I feel you may be a surgical candidate....but make sure it is a true Chiari specialist.
The list I will post here is not a referral nor an endorsement of those listed it is meant to be used as a tool to research Drs. The list was compiled by the members here of Drs they have been to, treated by and liked.....
CALIFORNIA
Dr. Langston Holly
Dr. Ulrich Batzdorf
UCLA, Westwood, CA
UCLA/Santa Monica Medical Center
Paul S. Jackson, M.D., Ph.D.
Palo Alto Center
795 El Camino Real
Level 3, Lee Building
Palo Alto, California 94301
(650) 853-2919
Dr. Jorge Lazareff, MD
Ronald Reagan UCLA Medical Center
200 Medical Plaza, Suites 140
Peter Morton Medical Build
Los Angeles, CA
(310)794-7700 Patient appoint.
Dr. Samuel F. Ciricillo
2800 L Street $5
Sacramento, CA
916-454-6850
Be advised you may have to travel to get to a specialist.
2 Comments
Thank you very much for the list. And thank you for your support. It’s nice not to feel alone in this, especially since it’s terrifying not knowing what will happen.
You're welcome. Please keep us posted on your journey finding answers and the right Dr.
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