FINALLY arrived at the solution of my problems (which I suspected all along)

[Mannas]

So I feel like I have been put through the ringer over the past year with dealing with my symptoms and trying to figure out what the actual cause is.  I have known I have a Chiari Malformation for about 20 years now but up until last year have not had any issues from it.  Over the past year everything has come on and  I have been through several doctors and multiple options of finding and addressing the "problem" but they all said they didn't think the Chiari was an issue.  I have suspected through all my research that the Chiari was the problem.  I was able to get an appointment with a Neurosurgeon on my own and met with him this past week.  I went in with the plan of not asking about the Chiari specifically and just seeing where he went with his diagnosis.  In the end he said that everything points to the Chiari as the problem.  It was a huge relief for me because I knew all along and no one else listened.  The best thing was unlike all the other doctors, he actually looked at the MRIs and CSF flow study himself and not just the results summary.  He said the biggest issue in my case is the overcrowding and people get caught up a lot of times simply on the measurements.  Long story short...as everyone always says see a Neurosurgeon.  It really was the best decision and I felt very comfortable with him because he didn't push surgery on me immediately.  He left it in my hands and said that it would be needed to stop the progression of symptoms but it is really up to me when I am comfortable and ready to do it.  If I want to wait I can so I felt very good about the whole situation.  I have finally had someone listen to me and validate what I was thinking and feeling.  I hope others dealing with this and going through the struggle of finding the right doctor will have the same outcome I have.  Don't give up hope!

[selmaS]

  That is the best time to add them...once u feel comfortable in doing so.....

And it is not a referral by adding him, but just another name for others to research : )

But, by all means be sure he is whom u want him to b b4 u add him.

[Mannas]

Thank you both so much.  He is very experienced with Chiari and the posterior fossa decompression, duraplasty and laminectomy but he handles other surgeries as well so I would say he is not specifically a Chiari specialist.   Selma, he is not on the list so if it is ok I would like to wait until after the surgery to recommend him just to be safe.  So far I feel wonderful and very comfortable with him but would safer recommending him to others once  I know all goes well.

[selmaS]

  Hi...getting the validation is such a relief...I remember how I felt...so I know just how u r feeling too : )
It is good to have someone listen and say yes there is a problem....and this is what it is.

Please keep us posted on ur next steps, if u decide to head into surgery...and if ur NS is on our list...especially if u feel so good about him/her....we want to grow our list so when u know how this all works out remember to add the Drs name if it is not already there.

  I am so happy for u that u have the answers.

    "selma"

[jenniferk86]

That is great news! I am glad you like your doctor, but I just want to ask and make sure that he is a chiari specialist? that he handles specifically the posterior fossa decompression surgery (chiari surgery?) I understand he is a great doctor and a neurosurgeon, but I have seen and heard of a lot of people making the mistake of going to a normal neurosurgeon for their decompression surgery and reaping lots of consequences because of it.  I am just looking out for you and want to make sure you have the best chances for sucess.  I am so happy that you for 1 have known about your ailment this long, have lived with it and not rushed surgery just because  you knew you could, and now you are taking charge of your health and demanding the proper treatment.  That is the way we need to be about our own health.

Do you have a surgery date?