Chiari Malformation Community
Surgery
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Surgery

Hello,
Sorry I have'nt posted for a while. I have been very busy with our shop and xmas school hols and Dr's appointments and MRI's - the works. To start with I found out yesterday when I went to my neurosurgen that the person who reported on my spine MRI stated that there was no evidence of Chiari malformation!!!! Even though a previous head MRI showed an 8mm herniation. The neurosurgen said "chiari's do not simply dissapear" and looked at my spine MRI films where he said it is clearly the same as the head MRI.
Anyway he said that he is most certain that I would in the next 10 - 15 yrs be having decompression surgery and that he is 90% sure that the surgery will relieve some symptoms and that symptoms will progressively get worse as time goes on. He said that there is a 1% chance of death, a 1% chance of paraplegia, a 3% chance of infection or leakage of fluid.
I could live with symptoms as they are now but would be continually wanting Dr's appointments and MRI's to keep tabs on my chiari and symptoms which leads to alot of running around, worry and expense when I can just have the op out of the way and as the neurosurgen says get on without the worry. So I booked to have surgery on 18th March 09. One night in intensive care and another 5 in hospital ward. Also am thinking I would most certainly be in a better position to have this surgery done at 48 than 58yrs. Oh geez - all I wanted before was to have something done so I didnt have this "thing" in my head and now I am running scared wondering if I should go ahead with it.
Any comments???? Very welcome.
Cheers Sue
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3 Comments Post a Comment
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620923_tn?1416285879
Sue,

...I am sure that those that have had surgery will chime in here and give u words of encouragement.I know this can be a diff decesion to make.....and I think we all can relate to ur "running scared feelings"


We r here....with shoulders that can r available....

"selma"
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555358_tn?1292535661
It's a major decision that's for sure.

I had the surgery last April. I didn't have a choice. I was in such bad shape that I had to, or risk paralysis. I'm glad I had the operation, but I didn't actually have to face the decision.

I agree that you'd be better off, age-wise, doing it now. But make sure you understand that there is no cure for Chiari. The operation can help with symptoms, but it doesn't completely fix it. Whenever you have major surgery, it takes a year or more to recover. So keep that in mind also.

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679866_tn?1240008966
Hello there...........yes it is a scarey decision to have the surgery but I am also scared that if I choose not to then I will end up in your position where you didnt have a choice as it had deteriorated such an extent.
I understand that there is no cure and that by taking the bone away it will make sure that there is room for the fluid to flow freely and take the threat of paralysis away?
My doctor says he isnt certain that all my symptoms are chiari related but most definitely thinks the pain up the back of my neck and head are. I've lived with that all my life and its kind of "normal" for me and it has been embedded into me that it is stress headaches etc.. - and I wonder what it would feel like to not have these head/neck aches and free movement of my head - and if the surgery will sort this or I will simply be causing myself more problems by having the surgery.
I do not have numbness (yet).
You were obviously in worse condition to me shane when you had your surgery, and I know of others who have worse headaches than me. I am so confused - I want to feel normal again but I may not. What if I feel worse after surgery? But what if I feel better?
I am thinking surgery will save me years of worry and repeated dr visits and continual monitoring MRI's (hoping) - but will it. Do you still need to monitor or are you now on safe ground and coping with the effects it caused you before surgery?
Thanks for sharing you experience.
x Sue
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