Aa
Aa
A
A
A
Close
707040 tn?1473944794

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
Sort by: Helpful Oldest Newest
707040 tn?1473944794
Thanks Selma, yes we have been extremely happy with this doctor!  He's been wonderful. Hope you're doing well :)
Helpful - 0
620923 tn?1452915648
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.
Helpful - 0
Have an Answer?

You are reading content posted in the Chiari Malformation Community

Top Neurology Answerers
620923 tn?1452915648
Allentown, PA
987762 tn?1671273328
Australia
1756321 tn?1547095325
Queensland, Australia
Learn About Top Answerers
Didn't find the answer you were looking for?
Ask a question
Popular Resources
Find out how beta-blocker eye drops show promising results for acute migraine relief.
In this special Missouri Medicine report, doctors examine advances in diagnosis and treatment of this devastating and costly neurodegenerative disease.
Here are 12 simple – and fun! – ways to boost your brainpower.
Discover some of the causes of dizziness and how to treat it.
Discover the common causes of headaches and how to treat headache pain.
Two of the largest studies on Alzheimer’s have yielded new clues about the disease