Friday, July 5, 2013

Questions to ask a Neurosurgeon...

Ok so I follow a ton of Chiari groups on Facebook and someone is headed to a NS for the first time and they asked what where some questions they should ask. Here is the list and it is great!!! Just wanted to pass along!!

1. Does the herniation determine the severity of symptoms? The answer should be no. What matters is if the CSF (brain fluid) is blocked and if the brain is compressed.

2. What are the related conditions, which ones do I have, and how will they affect my surgery? There are many conditions related to Chiari. To name a few, there is Syringomyelia (aka syrinx), POTS, Ehlers Danlos (EDS), spinal stenosis, spina bifida, cranial cervical instability (CCI), tethered cord (TCS) and retroflexed odontoid.

3. How many decompressions do you do per month? The experts do 3-7 per week.

4. Is decompression surgery a cure? The answer is no. There is no cure. Surgery hopefully halts the nerve damage being done and improves symptoms.

5. What type of decompression do you do? Do you reduce or remove the cerebellar tonsils? Do you do a laminectomy or put rods in? Do you do a duraplasty? If so, what material do you use (one’s own dura, a patch from the thigh, cadaver patch, bovine patch or synthetic material? Do you do a craniectomy or leave that part of the skull off?

6. What are your post-op procedures? How long will it take me to recover? What will you do to address pain after my surgery

Wednesday, July 3, 2013

Not doing so great....

Many of you have been following my journey since the beginning and know that I have not had the surgery and have been putting it off for as long as possible however I have the dreaded feeling that I am getting closer to the inevitable. I have been having more and more drop attacks. 5 or more a day. Yesterday I had a terrible headache which of course causes more attacks for me. We all know that this is unlivable! Plus I feel like my memory is getting more and more sporadic. Last time I went to the dr in December I was great! Amazing how in just 6/7 months things can change so drastically!!! UGH.... Thanks for letting me vent!