Question for those with Chiari

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Question for those with Chiari

Postby socialdkitty » Sun Jun 03, 2007 5:22 pm

I have a small localized syrinx at the C6-C7 level, but have not been diagnosed with Chiari...I have been to 3 neurologists (none are specialists in SM or CM). They all say I have no sign of CM, however the more I read the symptoms, the more I truly believe I do have CM.
I have severe pressure/pain at the base of the skull and neck which radiates forward into the temple area. It is sometimes (not always) brought on by straining, coughing, sneezing, bending over. If the pain is already there, doing those activities increases the pain/pressure. All of the head pain symptoms stay on the left side, I have no problems on the right side. I have other symptoms too, like fullness in the ears, numbness and tingling in the hands/feet, and some dizziness and balance problems.
My questions are:
Does what I describe as my headache sound typical to yours?
Are your symptoms confined to one side or another? Does this mean I could possibly only have problems (CM) on one side?
Does anyone know a doctor in West Virginia that is even somewhat experienced in CM? I have contacted a doctor in Morgantown and amawaiting a response, but still I don't even know how much experience he has. My insurance only covers doctors within the state.
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Postby jjames » Sun Jun 03, 2007 11:15 pm

Hi Socialdkitty -

What you are describing could be CM, but it could also very likely be SM. If the NS is saying no CM, than that is probably true. But SM can cause pain, pressure, numbness, etc. It is also very important to remember that each person is different, and no two people have the exact same symptoms. That is what makes our conditions so hard to dx and treat. Hang in there, and stay with the board. The people here have a lot of great info and insight.

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Postby dizzy2 » Mon Jun 04, 2007 3:00 pm

I have somewhat those symptoms. I have CM and have not been dx'd w/ a syrinx. I get pressure in the base of my skull at times. If I get pain in my head it is on the right back side of my head. It comes and goes. It's mild not severe. I have the fullness in my hears and roaring too. I have no numbness or tingling. This is why my nl does not think I have sm. But I do have the dizziness. Why don't you contact the Chiari Institute in N.Y. They will send you a questionare to fill out and if you have any tests you have done or mri's or scans you would send it to them and they can set up an appointment for you and auth. tests needed. I know that they don't have any available appts. until July right now but they will do all the tests possible. I know it's a hike, but I'm in CA and I am going to try to get out there some time this year.

Good Luck with all this.

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Postby razzle51 » Mon Jun 04, 2007 3:54 pm

There are a couple listed from another acm/sm site in Virginia
Vermont Peter Gunther, MD. 1 South Prospect ST
Burlington, VT. 05401 (800)358-1144

Virginia Jackson B. Salvant,
Jr.,M.D. 1651 N. Parham Rd.
Richmond, VA. 23229 (804)288-8204

Stuart Robert Stark, M.D.

Dr. Stark specializes in the diagnosis and treatment of headaches. He is the medical director for ICRC and NHTC. Dr. Stark received his bachelor of science degree from the University of Maryland and his M.D. from the University of Maryland School of Medicine. He performed his medical internship at the University of Maryland Affiliated Hospitals and his residency in neurology at Emory University School of Medicine and Georgetown University Medical Center. Dr. Stark was granted a fellowship in epilepsy and electroencephalography from the National Institutes of Health in Maryland. He is board certified by the American Board of Psychiatry and Neurology (ABPN).

Dr. Stark is active in public service and has made many medical-related presentations. He has received numerous research grants yearly since 1989 and has published articles in various medical journals. Dr. Stark is an active member of the American Academy of Neurology.


He is recommended by the new Chiari Connection site
I choose not to place "DIS" in my ability.

There is a light at the end of every tunnel....just pray it's not a train!.

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Postby keggler » Mon Jun 04, 2007 10:03 pm

Have you had a CINE STUDY done? I think it would give you a good idea where you are going as to chiari----CM 0 or a hernination of 10-15 cm can cause pain and problems.......I allways say DEMAND a MRI, try to get your records and films in the hands of an expert,then you aren't guessing.So many people end up at TCI having a repair job,because excuse me......

I was Dx in 1999 after a MVA. Two NS were sure I needed had a spec Dr Fuchs at Duke said he felt I wasn't a canidate for surgery,I'd had this many years,felt the operation would impede my qualily of life.I have a Hiatal Hernia and some Endocrine problems.

I'am 54 years old and still in fairly good condition,and if they tell me next month it's time,then I'll go and have the procudure done,I guess the point is I'll support our group,what ever decision we choose.Be your own advacate for good health care.

Later...Jerry in Carolina...
"You are what you eat----and-----You are what you think"

"Be Good To Yourself"
CM1-S/M-Basilar Invagination
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