Chiari with associated basilar invagination and Ehlers Danlos

[blondeballerina07]

I met with a chiari expert (ns) for the first time on Friday. It was a great relief to finally have all my problems justified not only did her provide me with a very clear explanation and asked for questions he provided me with a ton of medical literature. He found it disturbing that first off everyone has always said that the 27mm herniation would never cause problems and even more so disturbed that no one had ever mention the basilar invagination which is angling my brains stem at a 45degree angle. So he has ordered a CINE mri and a Flexion extension MRI and gone over the surgery with me. I guess my question is has anyone had the surgery to correct basilar invagination? He has said how "radical" it is and how altering it will be. I am aware from medical texts and his explanation but I think it would be good to hear from someone who has been through it to really grasp the idea in everyday life. For anyone who has had it how big is the incision they have to do for the bone harvesting from the hip, and on the thigh for skin? Are the scars unsightly, from the medical text it only talks about the one on the thigh and how they try to avoid it because of the scarring but he finds it necessary because of the Ehlers Danlos better than risking rejection of the patches.

[selmaS]

  Hi and welcome to the Chiari forum.

  If u r able to travel u will want to look at the list of Drs we have compiled by the members here of Drs they have been to, treated by and linked...the lists are not a referral nor an endorsement of the Drs listed, it is just meant to be used as a tool to start ur research of Drs.

Here is a link to the Health pages...look for one titled List of Chiari Drs....when u open it the main list is for Drs in the USA, but we do have lists for Canada, and the UK**, and Australia....http://www.medhelp.org/health_pages/list?cid=186

** please note the UK list was not compiled by members,but by the Ann Conroy Trust in the UK.

[Jennettef]

Hi I was recently told by a nuro surgeon that I might have basilar invagination only for 2 days later to tell me it was ok as it was within the limits but what worries me is how close he said it was to the brain and I have all the sympthoms that go with it I am at the moment trying to find a good doctor who would have experience with this I'm living in Ireland but if I have to travel I will any help would be much appreciated.

[*Stormy*]

Well I would just go with your instincts...in this situation it is really hard to know what the right decisions are as we can't predict the outcome.

BTW- I was reading what you posted to Selma..even with just the decompression surgery to think that you will be back at it in 4 weeks is probably setting yourself up for disappointment.  I totally understand your fears, I had 3 kids to care for and the 3rd one was only 2 at the time. But I made it through and you will too :) The best advice I was given is to let your body get the rest it needs b/c you will heal quicker that way. Not that I always listen to it....but it is sound advice anyway!

Good luck,
Carolyn

[blondeballerina07]

Thanks so much for the encouragement! I hope I am making the right decisions!

[blondeballerina07]

I don't have a date yet. I have a cine mri, flexion and extension mri of my brain and cervical spine, and whole spine this week and will get a date after those.
I had this ideal in my head that it would be done and heal up super quick and be back to work in four weeks and be back to school and working out and training with my team soon after now things have changed drastically so now I am really nervous and second guessing things but I know how miserable I am. Going from just the decompression to the decompression and the basilar invagination correction is a whole different ball game, and I am worried about the support system it will require. It is a whole lot on my plate I am sure you all understand that!

[*Stormy*]

I don't have any real advice to give b/c I don't have either of those problems. But I just wanted to say how happy I am for you that your have find someone that will listen and do something for you!!!!

Please keep us posted!
Carolyn

[selmaS]

HI...I also had overcrowding from odontoid process.....and bcuz of that the possibility of basilar invagination was there.

At this point I did not have correction of the basilar Inv.....but, I do have EDS and my scar  or zipper is larger than most as my patch was from my own skin as well, but was harvested from my scalp again to remove the risk of rejection.

I am not aware of a member here having that....could be someone that is no longer on here...I will try to remember.

When r u scheduled?

"selma"