Need recommendations for a neurologist in Washington State

I need to find a neurologist who would be willing to consider that 5mm COULD be causing symptoms and won't try to tell me that my symptoms are due to anxiety (I'm 100% sure they aren't) or malingering (again, not the case). If my symptoms are not from Chiari, I need someone willing to help me find out what is causing them.

I live near Everett, but don't mind going into Seattle or Tacoma if needed.

I already met with a NS and he won't operate (not enough herniation), but I still want to establish care with a NL so that we can keep an eye on things and so that if symptoms come back I can get in with a NL relatively quickly (last time it took two months and my foot drop and numbness had cleared up by then).

Thanks

Tags: WA, recommendation

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Permalink Reply by Andrea Jones on March 18, 2012 at 5:33pm

Thank you Christine. That seems to be my major hurdle with my insurance is getting access to UW doctors. I am going to see how my appt with Dr. Kim and see what he has to say. I woke in a panic this morning at the thought of having the surgery, yet I am worried that if I do not and these symptoms progress at the same clip they are now, by the time I am 35, I will be a drooling mess in a nursing home. Well, maybe not that bad. But I am concerned nonetheless.

I really do appreciate your help and the help of your friend. Please thank him for me.

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Permalink Reply by Whispers on March 22, 2012 at 9:56am

You are the second person I have heard of that says a doctor won't operate because of the size of the herniation.

It is really making my brain kind of work over time. I only have a 5mm herniation. But I also have syringomyelia. I had surgery, Oct 5, 2010. It didn't resolve the problem. I have to have surgery again. I think it is the syringo that they look at with me.The herniation, could be considered 'normal low lying'.

For me, what makes it 'operable' is the fact the herniation is acting, something like a cork to the spinal cord and blocking the cerebral fluid flow. Theoretically, causing the back up of fluid in the spine and creating the syrinx.(Notice, I said, 'Theoretically")

So, since the point of the surgery is to restore cerebral fluid flow, my question is... have you had a CINE MRI to see if your herniation is actually blocking your flow? IF you are symptomatic with a 5mm (or larger) it shouldn't matter if it's causing the blockage. Should it?

And the scary thing is...we have a condition that there is very little known about. Surgery is the only recommended therapy, and there is no standard treatment, even the surgery is not standardized, it is all experimental and controversial.

We all know how much it hurts, is debilitating to say the least, and just generally sucks! (ok, there I said it outloud)but the surgeries don't always go so good either. Remember, the docs idea of a 'successful' surgery is to restore cerebral fluid flow...not to restore the quality of your life. It's just a perk if it happens to.

Don't get me wrong..I am pro surgery. anything that even might give a chance is good. And until the medical/scientific community figures it all out, its all we got.

But I just wonder if you need to...if ya haven't already, work with your primary or local NS to get more testing to prove why it may be causing symptoms.

OR... they could be holding off until your herniation gets worse. When they do surgery the benefits have to outweigh the risk...especially with a risky experimental surgery.