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Chiari Malformation Community
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707040 tn?1473948394

Update and Questions

Hi all,
So my son had the MRI yesterday and it looks fine. He didn't see any CSF flow issues (although they did not do one with neck flexion, which bothers me). Afterwards, sat down and met with doctor.  We reviewed what has been tried and didn't work.

We also talked about the possibility of a second surgery to address any scar tissue that may be in there. HOwever, he is a very conservative doctor; I like that. He wanted to be truly sure that this is the best course of action. Again, I appreciate that. He also explained that a second surgery is much more complex than the first one. Scar tissue could have formed and adhered to many places, which makes it more risky and complicated. He said the risk of complication in the first surgery was about 2%-3% - the second one the complication risks jump up to 10% -15%.
It's a big jump up from the first one. He stated most surgeons will not even do a second operation, which I think I've heard a few times.  I trust this surgeon (Iskandar) as he was the one to believe my son was having problems, that surgery doesn't "fix" it, and has been trying many other things to avoid surgery. They are going to try the cervical collar again, he has a fitted one that he tried before (it wasn't helpful) and also try an Occipital nerve block for the  headaches, more as a diagnostic tool to gain more information. It isn't expected to last long, but if it works will tell him more.

SO....questions are :
- Has anyone else had an occipital nerve block? Was it painful? Did it help?
- Has anyone else been told there is an increased risk with second surgery? Did you have the surgery?
- Anyone have any experiences with scarring following surgery?Or need second surgery? (I'm still researching this)
- Has anyone had ANY experience with alternative or complementary medicine? Did you have relief from any of your symptoms? What did you actually try ?
Any info is greatly appreciated, or suggestions,  and THANKS!!
2 Responses
620923 tn?1452919248
COMMUNITY LEADER

  Hi...I have heard of that Dr and heard he was very good with Chiari......

We have a few members that have had more then 2 surgeries.....and it seems EDS was not found b4 the first surgery and could have been part of the need for more then one surgery....then of course other factors entered in as well.

Soccero and zygy2 are just 2 members that have had more then one surgery.

Hope this is helpful.
707040 tn?1473948394
Thanks Selma, yes we have been extremely happy with this doctor!  He's been wonderful. Hope you're doing well :)
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