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Could this be from the possible chiari 1 malformation?

I've been seeing doctors for about 9 years now, since I started experiencing symptoms at 16 which led my doctors to believe I have MS.

My latest MRI in October revealed a 5mm herniation and said Chiari 1 Malformation. My MS specialist said its something we will keep an eye on but nothing we need to be concerned about.

My neurologist said she doesn't think its really there she thinks its the way I was positioned in the machine.

Around the end of January I started experiencing dizziness, my neurologist believed it to be vertigo. After seeing a physical therapist to treat the vertigo, the physical therapist is sure that it is not vertigo and the dizziness is not being cause from my ears (or the crystals in my ears being off) but rather that it is coming from my brain.

I'm wondering if maybe this isn't MS related and maybe its from the possible Chiari 1 Malformation? My neck has been hurting really bad. The dizziness is worse when I lay down and move my neck certain ways. I'm so frustrated and upset. I'm tired of being sick and my doctors not knowing what exactly is going on with me.
2 Responses
620923 tn?1452915648
COMMUNITY LEADER

  Hi summerxo and welcome to the Chiari forum,

There are more with Chiari then MS....but since MS is more well known, it gets not only the attention but more Drs will over look Chiari and they do not know enough about it to treat it so lightly.

Chiari is not the herniation but a malformation of the skull....so regardless of how long or short the herniation is it can cause symptoms and will be Chiari.

Educate yourself on not only the symptoms but ALL related and non related conditions that need to be ruled out Then research Drs to find the right one for you . We do have a list of Drs for you to use  for your research....let me know which states you want to check out and I will post it for you if we have a list for that state.

Hang in there and know you are not alone in this,
1 Comments
If chiari is the malformation of the skull..what does the cerebellar tonsils have to do with it? I'm confused, my report say something about lowlying cerebellar tonsils 5mm below the foramen magnum equivocal for Chiari I Malformation. Correlates with symtpoms. So I just assumed that 5mm thing was the chiari.

My neurologist tells me there is nothing to worry about but with my recent symptoms it's hard not too.

I guess if you could send me a list for New Jersey and New York, better to research doctors now and not have to do it later if I need to see one.

Thank you!
620923 tn?1452915648
COMMUNITY LEADER

  When the skull is too small, the cerebral tonsils do not have enuff room and are forced out onto the brain stem or spinal cord...which can cause a multitude of symptoms.

Low lying symptoms can be also called acquired Chiari...but the person might not have the malformed skull....in this instance the Dr may wait to see if the tonsils retract....symptoms will be the same and if the tonsils do not retract surgery is the same.


NEW YORK

Chiari Institute
Great Neck, New York
(516) 570-4400
(516) 394-8350
· Dr. Harold Rekate
· Dr. Salvitore Insinga
· Dr. Rohit Verma
· Dr. Misao Nishikawa
· Dr. Sol Mora
· Dr. Amit Shelat
· Dr. L. Thierry Remy

The Chiari Neurosurgical [email protected] NSPC
Dr. Paolo Bolognese  MD
Suite 108
1991 Marcus Ave
Lake Success, NY 11042
Winthrop University Hospital
259 First Street
Mineola,NY 11501
www.chiarinsc.com


Dr. Gregory W. Canute
Dept. of Neurosurgery
725 Irving Ave.
Syracuse, New York
(315) 464-55133

Drs James Greenspan and Fred Scialabba
North Country Neurosurgical
454 Glen St
Glens Falls NY
(518) -793-8160

Dr Chanland Roonprapunt (formerly of The Chiari Institute)
Spine Institute of New York
(212)523-6720

Dr. Arthur Rosiello
New York Brain and Spine
24 Research Way
E. Setauket, NY 11733
631-444-9310


We do not have a list for NJ.....and the list posted above is not a referral nor an endorsement, 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...
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