Update after Neurosurgeon visit!

[zygy]

Just got home from our trip to see the neurosurgeon and I was very happy with the visit.  He is sending my doctors at home a letter telling them that they need to do the CINE MRI and the spine MRI.  I am so happy he is having this done.  I felt he was very honest with me about things and stated clearly that we really don't know exactly what Chiari causes but since my largest complain is all of the head pains he felt that I would be a good candidate for surgery and he said he would be more than willing to work with me if it is the path that I choose.  So, I will wait to have those tests done and talk with a neurosurgeon close to home once the results are back and I will see what they say here.  I went to North Country Neurosurgical in Glens Falls, NY.  The best thing about him was that about half way through our appointment he stated... "you are not crazy" .... I wanted to hug him.. LOL... I don't think he has any idea what those words meant to me.  He also stated that he felt in my case I could do the less invasive surgery and NOT open the dura... I would be curious if anyone has input on this?  Overall I am just happy that I feel like I have someone listening now!  

[*Stormy*]

Ray...so true..you really don't even put it all together until after you've lived with the diagnosis for awhile and then you start to realize all that weird stuff wasn't just "you".

Zygy- I am so happy for you!!! That is just great that you managed to find a good NS and it sounds like he is a good person as well. My NS said the same thing to me and it felt like the world had been lifted off my shoulders! Honestly, I was less worried about the surgery than the fact that I was guaranteed that I was not crazy!

As for the surgery, I too have heard of people having to go back to get the rest of it done but I'm sure that is specific to the progression...my NS did all 3 things but I had a lot of leg involvement and due to misdiagnosis, I had progressed quite a bit. I agree though that they will know a lot more after the CINE MRI and will be able to tell how much blockage you have. Good luck!!

[rod44]

I am glad that you found a NS who will listen. I agree with Selma, surgery is not a cure but a treatment for your symptoms....
Things are happening for you and the CINE and full MRI are important in getting a full picture of what is going on. Most of our symptoms are nonspecific and are found in more common conditions and we are often misdiagnosed when our condition becomes symptomatic to the point that we need to seek out a doctor  We have symptoms that we often don't recognize because they have been with us all our lives and we accept them as part of life....

Ray

[selmaS]

Hi...don't have personal experience with the less invasive  decompression, only that a few that had it had to have the more invasive one done at a later date......and there r those that had the more invasive one done that also needed a redo...

There is no magic to say which is best, u have to decide on the dr and go with what he suggests.

I am also sure a more deff course of treatment will be made after u have the Cine MRI and the full spine MRI.These results will help guide ur dr as to how to proceed.

Good luck : )

"selma"