Arnold-Chiari Malformation Support Group

Arnold-Chiari malformation, sometimes referred to as 'Chiari malformation' or ACM, is a congenital anomaly of the brain. Arnold-Chiari Malformation II occurs in almost all children born with both spina bifida and hydrocephalus, but ACM I is typically seen in children and adults without spina bifida.

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Preparing For Surgery on March 19th

I am 39 years old and for years I have suffered with constant headaches and neck pain. Approximately 10 years ago, I would periodically get severe exertional headaches when I had a bowel movement, laughed to hard, or coughed too hard. About a year ago, they started happening all of the time. For the past year, the back of my head has pretty much been numb nonstop with periodic tingling. I also frequently have a ringing in my ears, nystagmus, and sinus pressure and pain behind my eyes. The other day, driving through the neighborhood I grew up in, I suddenly was not sure where I was. I have know for a while about my Chiari Malformation. When I was diagnosed with it, I was also diagnosed with occipital lobe simple partial seizures and found the my c2 and c3 vertebrae have fused.

I am scheduled for decompression surgery, a c-1 laminectomy, and duraplasty on March 19th for my Chiari Malformation. I am pretty nervous about going through the procedure. Researching on-line, I have found many success stories and also many stories of people who are now worse off. I would love to get some advice from members who have had similar symptoms and gone through the surgery.

Replies

deleted_user
deleted_user

I'm sorry to hear about your surgery, how nerve wracking. I wish I had some advice I could give to help you out. I have an appointment with a neurosurgeon later this month to discuss my Chiari Malformation. That will be my first meeting for this so I'll see how it goes. Did your doctor find a link between the partial seizures and CM? Over the past two years I have seizure activities that have just gone downhill, trying medication after medication. My CM was found when we scanned to rule out brain tumors (family history) thinking this could have caused problems with my epilepsy, along with other symptoms I've been having.
deleted_user
deleted_user

I did ask my neurosurgeon about that and he said that it is possible but not probable. I initially went in for testing because of my headaches and that is when the EEG showed I was having simple partial seizures and that I had the Chiari Malformation. My neurologist was not even concerned with the Chiari at that time. I guess we will see what happens after my surgery. Some of the symptoms I have could be attributed to either the Chiari or the seizures so it will be interesting to see what goes away after the surgery.
deleted_user
deleted_user

Good luck with your appointment with the neurosurgeon. Please post to let me know how it goes and what plan of attack your neurosurgeon comes up with. I remember initially trying different seizure medications and most of them made me feel horrible. I am now on a nice lowe dose of Klonopin and Phenobarbitol.
deleted_user
deleted_user

Thanks, I'll definately keep you posted. My neurologist also was not concerned about the CM, she told me that we'd worry about it when I started getting bad headaches. It was actually my PCP who sent me to this Neurosurgeon because of my other symptoms, and everything has been moving very quickly and at times a little overwhelming. My appt is on the 20th. Please keep me posted on your surgery, what a scary thing to have to go through.
deleted_user
deleted_user

The best surgical outcomes are in the hands of chiari specialists. That means a Neurosurgeon who makes this condition the focus of his practice. If your NS is not one of them your outcome is unlikely to be successful. It doesn't matter how much you trust or great reputation he has, only experience counts with this surgery. If he only performs a few a year cancel the surgery. There are many neurosurgeries you can't be an expert in every aspect. This is your brain! You want someone who performs decompression every day. Plus its really difficult to repair a botched surgery.

Just checking a few points:
Why only C-1 laminectomy?
Many chiari patients have seizures.
Did he name the vertebral fusion?
MRI of cervical, thoracic and lumbar spine?
Why do you have ACM?

I apologize if this sounds curt but the 19th is not long away.
deleted_user
deleted_user

Please google/research :

Klippel Feil

Anterior decompression.

CCI-Cranio-cervical instability

BI-Basilar invagination