Chiari Malformation Community
Surgery
About This Community:

This patient support community is for discussions relating to Chiari Malformation and Living with Chiari Malformation.

Font Size:
A
A
A
Background:
Blank
Blank
Blank
Blank Blank

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
Related Discussions
3 Comments Post a Comment
Blank
620923_tn?1405964489
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"
Blank
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.

Blank
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
Blank
Post a Comment
To
MedHelp Health Answers
Recent Activity
Avatar_n_tn
Blank
lilbit1166 commented on Pain Control via Mind...
14 hrs ago
Avatar_f_tn
Blank
22amber44 joined this community
Welcome them!
Jul 23
620923_tn?1405964489
Blank
selmaS commented on photo
Jul 21
Top Neurology Answerers
620923_tn?1405964489
Blank
selmaS
Allentown, PA
979826_tn?1389039958
Blank
soccero
germantown, MD
992677_tn?1337358095
Blank
ChiariWolf
OH
5640779_tn?1375816966
Blank
desertstorm2009
AZ
7530528_tn?1405298278
Blank
AKC_75
TX
1667208_tn?1333111449
Blank
zygy2
NH
Chiari Malformation Community Resources
RSS Expert Activity
233488_tn?1310696703
Blank
New Cannabis Article from NORTH Mag...
Jul 20 by John C Hagan III, MD, FACS, FAAOBlank
242532_tn?1269553979
Blank
3 Reasons Why You are Still Binge E...
Jul 14 by Roger Gould, M.D.Blank
242532_tn?1269553979
Blank
Emotional Eating: What Your Closet ...
Jul 09 by Roger Gould, M.D.Blank
Top Neurology Answerers
620923_tn?1405964489
Blank
selmaS
Allentown, PA
979826_tn?1389039958
Blank
soccero
germantown, MD
992677_tn?1337358095
Blank
ChiariWolf
OH
5640779_tn?1375816966
Blank
desertstorm2009
AZ
7530528_tn?1405298278
Blank
AKC_75
TX
1667208_tn?1333111449
Blank
zygy2
NH