Monday, July 25, 2011

Post-Op Anniversary

No funny stories in this post.
Today is my 8 year post-op anniversary.
8 years ago today I had decompression surgery.
8 years ago today I had brain surgery.
I can't believe it's been that long already.
Surgery was scheduled for July 25th, 2003 at York Hospital. Dr. Schlegel and Dr. Winer performed the surgery. I was told afterwards that it was good they got in there when they did because the base of my skull was eggshell thin. I was in ICU (Intensive Care Unit) for a little while recovering. The pain after surgery felt much worse than before. It felt like my brain was trying to push out from every opening it could find. There were constant ‘explosions’ of pain going off inside my head. I was constantly puking from the pain. I couldn’t keep any food down. I was ‘eating’ ice-chips. The pain medicine they gave me didn’t seem to help. I hardly slept. My mom stayed with me every night because I didn’t want to be alone. I was finally moved to a regular room but unfortunately, I was put on the pediatric ward. There was always some kid crying or screaming, that didn’t help. All I wanted was to go home. They wouldn’t let me leave until I was able to get food down and keep it down. I also need to get up and walk around daily. My walks around the nurses’ station were blurry. I couldn’t see (because I wear contacts/glasses and didn’t have them because I was in too much pain to bother) and was very dizzy. I was in the hospital for a week. I was finally able to go home when I kept some food down. Dr. Schlegel sent me home with Percocet for pain; which did not help at all. We hardly made it half way home before I started vomiting again. Every bump and turn was murder. The following week I had a follow-up MRI and visit with Dr. Schlegel. I was still having trouble keeping food down. Mom bought something like Pedialyte and I was at least able to drink that for some kind of nutrition. I still couldn’t sleep and the pain was not getting any better. Dr. Schlegel prescribed a different medicine for pain and to help me sleep. After taking that (I do not remember what it was) the pain started to subside and I was finally able to get sleep. I was beginning to keep food down. It took about 4 weeks to recover to my somewhat normal self. Quoted from A Real Horror/My Story
I'm not sure how long surgery lasted. I believe it was about 5+ hours.

I'm going to jump around. I should really talk about diagnosis and how its found (other than generalizing and saying MRI) but as its my Surgerversary (like that term? just made it up.) I figure I should talk a bit about the procedure.


I'm going to try and address the following questions: (Answers are based on my personal experience as well as from other sites.)
How do you know if you should have surgery?
What happens exactly during decompression surgery?
Will this cure/fix my Chiari?
How long does it take to recover?

  • How do you know if you should have surgery?Your NS will tell you his/her opinions and resoning for surgery. The more complicated your symptoms are, the more likely they are to recommend surgery. There isn't one specific reason to give the automatic yes on surgery. Depending on the severity of the symptoms and the doctor. If you feel your pain is too much and your not getting the right help/treatment...the best bet is to get a second opinion.
  • What happens exactly during decompression surgery?The goal of the surgery is to create more space around the cerebellar tonsils and restore the normal flow of CSF.  The procedure involves removing a piece of the skull in the back of the head near the bottom (craniectomy).  Often part of the top one or two vertebra are also removed (laminectomy).  At this point, depending on the individual case and doctor, some doctors will also open the covering of the brain, the dura, and sew a patch in to make it larger (duraplasty).  There are many variations in how the surgery is performed, including (but not limited to) how much bone to remove, whether to open the dura, what type of material to use for a dural patch, whether to shrink or remove the cerebellar tonsils, and whether to replace the missing piece of skull with anything.  Unfortunately, there is no consensus, and no strong evidence, on which technique(s) is the best.  Because of this, it is important for patients to understand specifically what their surgeon will be doing and why.  The procedure itself lasts several hours and most people will spend a night in the ICU and an additional couple of days in the hospital. (Taken from ConquerChiari)
  • Will this cure/fix my Chiari?
    This is not a cure. You should no that surgery is a form of treatment for Chiari and not a cure. It is a way to alleviate pressure from the cerebellar tonsils on the skull. It can help relieve you of pain and symptoms. It is not a guarentee that you will be symptom free. (didn't try to rhyme.)
  • How long does it take to recover?As with most anything else...everyone is different. Everyone will have different recovery time. Hosptial time may be a few days to a week. After that it could take a few weeks to a few months to fully recover.
A really good site with some info on all of this is Precision Neurosurgery  along with the Conquer Chiari link above!
Well it is time for me to get off for now!
Comment, Share the blog, Help Spread Awareness!
Thanks for reading:)
-Alicia

Oh before I forget...another link: Conquer Chiari PP Presentation: Treatment as the link says...its a powerpoint presentation on treatment. It is in PDF format. Great read and easy to understand!

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