Chiari Malformation Community
Surgery soon
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Surgery soon

I am getting surgery in a little over 2 weeks with Dr.John Tew in Cincinnati. It ended up that my CSF flow was blocked, and I can't wait to write a letter to my former neurologist that wrote me off and said that no neurosurgeon would operate on me because my chiari was too mild! N-e-ways, any tips would be great and I am wondering how much hair will be shaved off and on average, how long recovery takes. Thanks all :)
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I just wanted to let you know that you will be in great hands!! Dr. Tew did my  posterior fossa decompression surgery this past December and did a woderful job. He shaved an area about 6 inches long and 2 inches wide...he goes up a little higher because he uses your own skin for the dura patch. Its hard to say about the recovery time because everyone is different...I am still healing day by day, but after about only 3 or 4 weeks I was feeling good enough to do some things.  The neck stiffness and some headache persisted quite a while longer than that, but each day got a little better. Dr. Tew said it may take a year or over for everything to settle down. Hope everything goes well with your surgery! I know you will be fine...Dr. Tew walks on water as far as I'm concerned ;)

Jennifer
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HI Sarah,

Yes I have to write that letter to my NL soon too.....he wrote me off the same way except he didn't even bother to tell me about the Chiari at all.

I am really glad that you are finally getting some help, I just wanted to wish you good luck. Warrior gave you some good links so make sure you check them out!

Jennifer can give you the best idea of the scar and shaving as she had the same dr...my scar was not as long but I didn't have skin removed for the patch, mine was synthetic. However, after about 4 weeks my hair was already covering the scar so well it was really hard to tell!! I would tell ppl that I had brain surgery and they would give me a weird look b/c they couldn't see any hair missing.

For me the recover was rough for the first 2 weeks and I definitely didn't feel close to normal until a month after. I would say at 2 months I really started to feel like I could get back into my routine a little easier. I am now 5 months post op and I am still taking things day to day b/c there was a lot a damage done so it will take a while to repair. I completely agree that it could take a year to get things to settle down, some have told me they saw improvements up to two years.

Anyway, take care, rest easy and let us know how you are after :)

Carolyn
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Hi Congratulations on finding the right dr for u...Dr Tew has a very good rep with chiari.

AS for the hair....it is depending on the dr and what all he is going to have to do...mine told me a small path up the back of my head....not, the person did the whole back of my head, BUT, I was also having skin harvested for a patch.....so  it does matter  who the dr is and who is doing the shaving...my dr doesn't actually do it..OR staff nurses do....so they didn't have the memo of how much he told me : D

I am  3 days shy of my 1 yr annv of my PFD and my hair is growing in nicely.....very thick...but the sides r longer than the back...I keep trying to blend with out cutting too much off.....

I am still not back to my old routines as I lost my position  bcuz of all this..and I am still not allowed to drive per the dr  as I have other related issues that need to be addressed.

Most drs will tell u it can take a yr or 2 for u to completely heal....keeping in mind if u have EDS like me u could be a slow healer.....

Good luck and do post ur surgery date in the surgery date thread so we all remember : D

Godspeed
"selma"
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