Saw the Neurosurgeon yesterday NC

[Jamie880]

I had my appointment with Dr. Sweazy at Wake Forest in NC yesterday.  I saw his PA first and then Dr. Sweazy.  They were both just incredible.  Very kind, pleasant, straight forward, and professional.  I was so comfortable.  I think I had a very normal neuro exam.  Dr. Sweazy is referring me to a Neuro in whom he has great confidence for a complete neuro workup.  He said he would not recommend surgery.  YEA!  I was anxious about being referred immediately to a NS.  Dr. Sweazy said the SM was probably the reason my Dr referred me to a surgeon and the MRI is not enough to make a determination.  I feel like I am finally on track to get a handle on what is going on.  They are going to call me Monday with an appointment with Dr. Bay also in Winston Salem.  

I cannot say enough about the professionalism and kindness of the entire staff at the NS department at Wake Forest.  I didn't wait for my appointment, the PA or Dr. Sweazy.  It was like clockwork.  I really got no answers, and I didn't expect any at the first appointment but I honestly feel like I am on my way to understanding what is going on and why I am having the symptoms that have changed my life.  He also said there are allot of things I can do.  He gave me the impression that he thinks my issues in my neck are a concern.  I have degeneration and bone spurs.  But again, there are allot of things that can be done way short of surgery.

I am wiling to try anything short of narcotics or surgery. I was praying for someone who would pursue every other available avenue first.  I think God answered my prayers and I am hoping Dr. Bay shares his philosophies. After my appointment with Dr. Bay I will post an update.

[Shane99]

"I feel I NEED to know what caused my syrinx, is there something in going on in my head, do I have CFS flow issues. . . "

Yes, a syrinx is the CSF flow problem.

As for what caused it, it's probably the cerebellur herniation. As the cerebellum slides into the spine, it blocks the flow of spinal fluid. It can block it in your spine so it can't reach the brain properly, or it can stop the flow in the brain causing Hydrocephalus.

If you have a syrinx, I wouldn't be surprised if they start talking surgery. That's really the only way to deal with one. They may not do the decompression (Chiari) surgery, but they'll want to talk about a shunt.

[Jamie880]

Hi Shane,

I have a 3.8mm syrinx 5mm wide from t7 to t9.  I am not completely opposed to either, but that is not where I want to start.  I have severe hypersensitivity to narcotics.  My blood pressure bottoms out and dose is very hard to control for me.  I was hoping I would find a  NS that would really find out what is causing my problems and not just write a scrip and send me on my way.  I feel I NEED to know what caused my syrinx, is there something in going on in my head, do I have CFS flow issues, what made this hit me like a train?  I was assured they would do a complete workup and get me as many answers as possible.  

Thanks so much for always being there for us and answering questions and giving support.  THAT is a great med!

[Shane99]

I'm glad you had a nice experiance. So many of us don't.

Have you been diagnosed with Chiari or Syringomyelia? If so, what is the size of the herniation?

I notice that you said you are willing to try anything short of narcotics or surgery. I hate to say it, but you should reconsider any strong stance against those. There is no cure for Chiari, but the operation is the best way to get relief and to slow the progress of a syrinx. And while I understand that you don't want to get hooked on any kind of drug, if the pain gets severe enough, don't be afraid to ask for help.