Hi, I have been to Dr. after Dr. trying to figure out what is going on with me. I had a spinal fusion in 06 and have been having frequent headaches since. The last year has been horrible, with loss of balance, ringing in the ears, floating sensation, jaw pain, clinching, neck pain. The list really goes on and on.
Like so many other's I have been sent or pushed off on everyone from Neurologists, to Shrinks, but no one ever really takes me serious. I can't even get back in to see my Neurosurgeon who preformed my spinal surgery for some reason.
Finally my Family Dr. which is only a PA (and the only one who listens to me) sent me for an MRI last week and when I picked up the report this is what it had to say in findings.
Disc osteophyte complex at c5-6 with mild cord mass effect but no cord edema.
The paraspinal musculature is normal. The visualized posterior fossa demonstrates there tonsillar ectopia. The cerebellar tonsils extend approx. 5 mm below the level of the foramen magnum. they do not have a peg-like configuration.
Stable cerebellar tonsillar ectopia. The configuration of the tonsils is not the peg-like morphology typically seen with Chiari 1 malformation.
So my question is: Do I have Chiari 1 Malformation or not? and if not why is it herniated 5 mm and what should I do? I live in Fl and have yet to find a good Dr. I really am miserable and need some relief. I know what I am experiencing is Physical and not a figment of my imagination.
I go back to see my family Dr. in a few days but I am scared she isn't going to have any advice for me either.
"Cerebellar ectopia is a term used by radiologists to describe cerebellar tonsils that are "low lying" but that do not meet the radiographic criteria for definition as a Chiari malformation." http://en.wikipedia.org/wiki/Brain_herniation
I have only 3mm herniation and also not peg shaped. The tonsils are wrapping around the brainstem and pushing down into and sealing the foramen magnum and somehow restricting blood flow.
I do not even have headaches, but I do have symptoms like ringing/pressure in ears, a very disabling dizziness/lightheadedness and a nasty laryngeal dystonia that required tracheotomy.
Very little is known about cases like ours. I have even been to the Chiari Institute in New York and they DID call it chiari, though they were not sure it caused the dystonia. (but now I am pretty sure it does).
Basically what they say is, if you do have some herniation and you have some of the symptoms, then you do have a chiari. They did not even measure the length of the herniation! They say that does not mean anything.
Oh the jaw pain is all too familiar! I tend to push my jaw forward an keep a lot of muscles in that area tense, because it somehow helps to keep my airway open.
And the asthma you mention in your profile.. is that real or misdiagnosed because its your vocal cords that make the wheezing sound?
I am new to this website too and I recognize a lot of stories, very exciting and interesting!
Wish you good luck!
Thank you ploink for all the information.
All this is still so new to me. I can say after reading up on this the past couple weeks I have realized that this is definitely what is causing my symptoms. It all makes so much sense now. I really was at my wits end, but now I have hope. I just pray that I can find a neurosurgeon who is educated on this and able to help. I don't know how much longer I can stand living with this. It gets worse and worse everyday it seems. I haven't found any Meds that really help much especially with the nausea. As soon as I sit down at the computer and start to read or type I start becoming nauseous. Driving is pretty bad too. I thought I was just car sick all the time, but now I'm finding out it very well could be another symptom of this condition. Seems like I feel really good in the morning when I get up but as the day progresses I become sicker and sicker until I'm forced to go lay down.
Well, Again Thanks so much :)
Sleepypea, I am happy to be of any help. It is nice to share things and help each other. Some days I doubt everything and tend to think it will all be over in the morning, even after so many years of struggle... It is good to meet people that understand and to reassure myself that I am not just going nuts :)
My MRI says basically the same thing. "There is mild cerbellar tonsillar extension below the foramen magnum consistent with mild cerebellar ectopia probably not a true chiari 1 malformation". It notes it's a 5mm herniation and the tonsils have a "relatively normal rounded appearance"
I don't get migraines. I've had one giant run on headache that never stops. My ears ring off and on for hours a day. My jaw also hurts, and behind my ears.
My balance is so off. I'm dizzy daily also. I haven't worked since 98' when I got hit by a car and this all started. (I just found out about this two weeks ago).
I see a neurologist on Wed. I live in Philadelphia and from exp. this isn't the best place for doctors that's for sure.
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