Hello

[pringlec]

Hi all. I have been visiting this forum (love it) for some time now, although this is my first time posting. I was diagnosed with a 9mm herniation w/ a large cervical syrinx almost four years ago and had decompression surgery shortly following. I experienced and still do experience alot of the symptoms I have read about in this forum. I suffered with awful migrain headaches for eight years, pain/numbness in arms and legs, dizziness, nausea, and towards the end black outs. I had physicians telling me one thing or another (all wrong) for years. I even had a physician tell me it was allergies (never heard of anyone blacking out from allergies, you?) After my surgery I had a very hard recovery and although I feel better than I did prior to my surgery I still get headaches and have awful vertigo. During my surgery the neurosurgeon opted not to put in a shunt because he felt the syrinx would discipate on its own (my opinion, bad call). Although it got somewhat smaller following the surgery, over three years later the syrinx has not dissipated. The nuerologist's I have seen lately feel it is nothing to worry about as long as it does not get bigger. Is anyone else experiencing this? What do you think? Worse.... my 12 y/o son who has severe Tourette's was just diagnosed with CM1, 6mm herniation. I have read there may be a connection between Tourrette's and CM1, has anyone else heard this? I get very frustrated getting different opinions from different ped. nuerologist's with no answers. He was seeing a Tourette's specialist at John Hopkins, but he only wanted to treat the Tourette's, not the Chiari or other nuerological problems. He is now seeing a specialist at Childrens Hospital in DC but he also is more concerned with the Tourette's. I really want to know if they are related. Any advise?

[LIZARD]

Hmm...Not sure about ACM and Tourette's but I suspect there's a link between ACM and autism. My son has both, and I know of many other parents whose kids have both, so I don't think it's too much of a reach to consider that ACM and Tourette's could be connected. Have you done a Google search? Let us know if you find out. :)



LIZARD :)

[pringlec]

Lizard, Thanks for your response. I am googled out :) just joking, I think the internet has given me more information than any other source. I have researched both Tourette's and ACM thoroughly and have found lots of information about both but little to connect them. Five years ago I heard about a nuerologist who believed the disease starts at an early age with autistic traits which go away and then between the ages of 7-10 return as Tourette's. My son did do things between the ages of 1-3 which caused people to ask me if he was autistic. Between the ages of 4-7 nothing. And then at the age of seven it was like someone flipped a switch in his brain and his life was changed forever. If this doctors theory is correct I would assume there could be a link between Tourette's and ACM also. I just can't find any information to support it. I am curious to your opinion on this.

[LIZARD]

It is intriguing to me how often I see kids with both Tourette's and autism, too. I have long suspected that there are several types--not just degrees--of autism, and each one has its own cause(s).

As far as his ACM, he'll need a ped nsg to address it. A neurologist is likely to be utterly worthless to you, since they aren't schooled in structural abnormalities of the brain and can't do anything about them, anyway.


Good luck...

LIZARD :)

[pinkflipflops]

Go to the Chiari Institue In NY!!!
The #1 Chiari Doctors are there. They are the grandfathers of Chiari. My husbands had the surgery. His mom also had surgery there to fix a surgery from a NSG in Chicago. I wouldn't let my husband be touched by anyone else. This is the way to go. His mom almost died because of the "highly recommened and excellent" NSG in Chicago!

[roz1950]

How are your mom and husband today ?

[pinkflipflops]

my mother in law is on disability but alot better than before her surgeries. She can't work because she never knows how she will feel from day to day. Some days she can't drive and has such bad headaches she is in bed all day. The doctors in NY did several surgeries just to fix the one in Chicago...
Shes been told if it weren't for the chicago surgery she'd be alot better.

My husband is better since the surgery, but the Chiari surgerys never fix you 100%. He doesn't have any "drop attacks" anymore and his symptoms are so much better. :)

[Mayzoo]

Tourettes, like, autism is a cerebellar disorder. Therefore a connection between ACM, tourettes, or autism is not a far leap of logical medical reasoning. Anytime the cerebellum is compramised, ie, ACM all kinds of cerebllar related neurologic disorders may present.

Here is a link showing the relationship to Tourettes and the cerebellum:

http://www.medscape.com/medline/abstract/12172051?src=emed_ckb_ref_0


Good luck with your medical research, and if I can help any more (assuming this helps some :p ) let me know.

Mayzoo

[Mayzoo]

Sorry I just checked--this link wont work unless you have an medical field account already--let me just cut and paste it here, and for the board.

"One MRI study revealed abnormal T2 relaxation time in the putamen and caudate nuclei (Peterson, 1994). One case report described a child with a sudden onset of stereotyped behaviors after a streptococcal infection; this child had basal ganglia volumes larger than those of age-matched controls during the acute illness and smaller volumes months later (Giedd, 1996).

As TS is (fortunately) rarely fatal, only a handful of autopsied cases have been reported. Most abnormalities were in the basal ganglia, yet this was also the region most carefully scrutinized because of a priori hypotheses (Swerdlow, 1994)

Another study showed that patients with TS had small right frontal lobes, large left frontal lobes, and more frontal lobe white matter compared with healthy control subjects (Fredericksen, 2002). Other investigators also found increased frontal white matter (Hong, 2002)."

This is not the whole article, as it is very LONG!!


Wikipedia:

The basal ganglia are a group of nuclei in the brain interconnected with the cerebral cortex, thalamus and brainstem. Mammalian basal ganglia are associated with a variety of functions: motor control, cognition, emotions and learning.

I could be reading it wrong, but that is my opnion anyway.

Mayzoo