More DailyStrength
Health Event Calendar
See what's new on the site
Step-by-step Tutorials
How to use DailyStrength
We're on Facebook
Check out our page
Follow us on Twitter
Read our tweets
Get Cool DS Stuff!!!!!
Shirts, Hats, Baby Wear
Preparing For Surgery on March 19th
Watch this 
View More Posts Ignore
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.
Posted on 03/05/12, 10:07 pm
6 Replies Add Your Advice
Reminder: This is a support group for Arnold-Chiari Malformation. We trust you will do your best to remain positive and helpful. For more information, see our rules of the road.

You may also create your own Member Groups where you can moderate the discussion.
Email me when others reply to this topic help
View More Posts Ignore
Reply #1 - 03/07/12  8:19am
" 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. "
View More Posts Ignore
Reply #2 - 03/07/12  9:04am
" 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. "
View More Posts Ignore
Reply #3 - 03/07/12  9:06am
" 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. "
View More Posts Ignore
Reply #4 - 03/07/12  12:58pm
" 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. "
View More Posts Ignore
Reply #5 - 03/07/12  8:37pm
" 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. "
View More Posts Ignore
Reply #6 - 03/08/12  6:23pm
" Please google/research :

Klippel Feil

Anterior decompression.

CCI-Cranio-cervical instability

BI-Basilar invagination "

Add Your Advice

More From Around the Web