It"s getting worse!

Question

Hello everyone, i am new to this forum and just have some questions. I found out in 09 that i have Chiari I and got pregnant shortly after that discovery, so I halted testing until recently. There is every symptom you could imagine going on with my body and I have been scheduled to see the ns. I have considered surgery and would appreciate if anyone could tell me what to expect the day of and post-op. Thank you

selmaS · Answer

There is a thread floating around, but in the top right of the screen u will see a link to the Health Pages...there is a perm page there with a list...here is the link-http://www.medhelp.org/health_pages/Neurological%20Disorders/DOCTORS-LIST-FOR-CHIARI-SYRINGOMYELIA/show/1062?cid=186

puncheon · Answer

No, I haven't seen the list yet but i'll keep looking. Where can I find it? I've had all of those tests done.

selmaS · Answer

Well, u still need one that specializes in chiari not just skull base surgeries...and u want to make sure all testing has been done like a CINE MRI to check for a CSF obstruction, over crowding, a syrinx and related conditions.This is very important.

  Surgery is not a cure, and the strain of a natural childbirth can trigger symptoms of chiari to be worse.And surgery itself can cause a lot of other issues as well.This can be a very stressful time, but we can help u thru it....I do not sugar coat either, I like u to know facts...and I do not try to scare, but educate....please feel free to ask questions and if we can we will answer to the best we can.

  Make sure u have the right NS for u...and that the benefits out weight the risks.
     Did u look at our list of chiari drs?

  Please keep us posted as to when and where and who of ur surgery

puncheon · Answer

Thank you for welcoming me. I was referred to the ns by the nl and he specializes in skull base surgery. As for the symptoms, you know when you hit your funny bone but nothings funny, well that's how I feel all the time. You name it I feel/get it.

puncheon · Answer

Thanks! I'm the same way, my symptoms have gotten worse since my last child was born and it seems as though i feel something different/new every day. Also I waited for the ns to call but decided to call them instead and was able to make an appt, try it you may get lucky. Good luck to you too!

Autumn55 · Answer

I went through something similar, in that I stopped testing when I got pregnant.  Now I'm waiting to hear back on the results of me recent testing.  My NL told me about a month ago that she needs to send me to a NS to discuss surgery, but I'm still waiting for my phone call.  Its so stressful waiting and not knowing what the future holds!  My symptoms have gotten drastically worse since childbirth and continue to worsen every day I think.  I'm always amazed at all the new sensations and symptoms.  Healthy people would think we were crazy if we told them some of our symptoms!

Sorry I haven't had surgery yet, so I can't really tell you what to expect, but hopefully when the time comes you have received all the information you need to feel comfortable about the situation and I hope the surgery brings you the relief you need!  Good luck!

selmaS · Answer

Hi and welcome to the Chiari forum.

 It all depends on the dr u have ...they all can be diff as can the hospital u  go to as to what to expect...many of us do have a journal in our profile with  our surgery experience....

 May I ask, is ur NS a true chiari specialist?...how did u find him/her?

 I am also interested in what symptoms u r having, since u had ur child...I know that childbirth can cause an increase of the symptoms ........

 We do have a thread for members to post their surgery date,and we post a prayer thread.

  We r glad to have u here, but sorry for the reasons that bring u.

                 "selma"