Questions for NS

[Steph1284]

Hi everyone! First, I want to thank all of you for sharing your experiences here. It has helped me a lot to read about it. I have been seeing a neurologist for the last 6 months for headaches, tingling/numbness in my arms/hands, and other things. He has diagnosed me with Chiari and tried to just treat my symptoms with meds but nothing seems to work. I have an appointment this Friday to see a NS at Duke for him to look over my MRI's. I guess I will be finding out where we go from here and whether I'm a candidate for surgery. My question is, are there any specific questions that I should ask the NS? I'm so lost here. Thanks everyone.

[selmaS]

  Thanks for the update...sorry u r so scared but it is normal, we all have had the same feelings regarding this surgery.....

I will post a prayer thread for u....and do have someone post updates <3

[Steph1284]

The NS said that I have an 8 mm herniation but no evidence of a syrinx. So we are moving ahead with the surgery. I will be having surgery on October 10th. I'm scared to death, but hopeful at the same time (if that makes sense).

[selmaS]

  Good Luck and do let us know what u find out Monday....and if u do schedule surgery, post ur date in the surgery date thread so we can post a prayer thread for u.

((hugs))

[Steph1284]

Well the neurologist had said I had a 4 mm gap but the NS said he measured it at 6-7 mm, if not bigger. After our appointment, I went for a 3 hour MRI. He said he wanted to check my whole spine for a syrinx and the CSF flow in my brain. I have to call them Monday for the results and he said if my CSF flow is blocked like he is pretty sure it is, then we will schedule my surgery.

[selmaS]

  Just do not rush into nething as it can cause more issues if u do not get all the testing and have the right Dr...if the Dr says surgery will cure or fix u, run the other way as it is not a cure only a means to slow progression and restore CSF flow.....

So if ur Dr does not do a CINE MRI to check CSF flow and wants to do surgery....u again may want another opinion.

It is normal to be scared I think we all were/are at some point during this journey, just know u r not alone : )

[Steph1284]

Thank you so much! I printed out the list and they are questions that I have not even thought of! I think the whole thing is just really freaking me out & I'm scared. I'm just ready to feel better though.

[selmaS]

  Hi we do have a list of ?'s for the Chiari NS.....here is the link- http://www.medhelp.org/health_pages/Neurological%20Disorders/Questions-for-a-Chiari-NS/show/1155?cid=186

One of the more important ?'s is how can u ask more /'s once u go home and digest what u were just told....we tend to get like a deer in headlights....and stunned that we can not comprehend what is being said to formulate ?'s.

Some will offer an email addy which works well since it is a direct link to the dr.

And another important question is how many surgeries have they done and what other testing will they do to rule out related conditions b4 surgery.