Monday, April 23, 2012


Today I met with the neurosurgeon. As it turns out, I need more testing thanks to cervio cranial instability. For those keeping count, that leaves me with:

- Chiari Type I Malformation
- Ehlers-Danlos Syndrome
- Cervio Cranial Instability
- Syrinx

The reason this is important is because there is a change that some of my problems can be attributed to the hypermobility issues of this condition. Think of my head as being a big pumpkin on a toothpick. Eventually, it just can't hold itself up. We can't do surgery until we rule this out as being a huge issue. We know that it IS an issue, we just don't know how much of one.

The reason that this is a problem is because the decompression might not be enough. Sometimes you have to have both:

"Some patients with symptomatic Chiari I Malformation and/or syringomyelia have associated craniocervical instability or ventral brainstem compression that contributes to their signs and symptoms. In some cases, bone and connective tissue abnormalities (such as Ehlers-Danlos) lead to instability of the craniocervical junction and ventral brainstem compression. In this small percentage (less than 5%) of Chiari patients, posterior fossa decompression alone may not improve symptoms and may, in fact, worsen symptoms. These patients may require occipitocervical fusion and, in some cases, removal of compressive tissue anterior to the brainstem." (

There are other symptoms associated with the CCI that are similar to the Chiari symptoms (headache, neck pain, dysphagia, decreased gag reflex, weakness, numbness, gait problems, hyperreflexia, C-2 numbness, facial numbness, torticollis and dizziness) so it's kind of hard to tell what is causing what at this point. 

Dr. Tew and his staff were very nice to me. He thinks that I have had a progressive cognitive and neurological functional loss over the pass 30 years that is severely impacting my quality of life. There is no cure, there is no other treatment available to me, I am not going to "get better." I might, with surgery, slow down the symptoms and improve my daily living somewhat.

He ran other tests and uncovered other symptoms that I was unaware of. I have nerve damage, loss of gag reflexes, and very little hearing in my left ear. This condition has wrecked havoc on my body in ways that I was totally unaware of. I took my friend Ashley with me and when after the surgeon left (he spent more than an hour in the hospital with me) Ashley and I talked about it and he said he had no idea how bad this was and couldn't imagine living this way. I felt bad because his one of parents suffered from Alzheimer's but he compared it to that.

While in the hospital we did a sublaxation X-ray for the cervio cranial instability. We will also schedule a full spinal MRI next week (they're supposed to call me tomorrow about that date and time) and another appointment to discuss surgery date and time. I will actually do the MRI at their imaging center in Northern Kentucky and then drive on up to Cincinnati for the appointment on the same day. They'll get the results by the time I get there.

The CINE MRI did show blockage and my herniation is large enough to be causing my problems. I asked these questions.

We weren't really sure what was going to happen today in the hospital but we were glad to get somewhere else. I feel confident that we are moving in the right direction now. I really hope that I don't have to have the fusion and that we can stick with the decompression. I am worried because when Pete pulls up on my head I do feel some relief from the pressure but maybe the decompression will be enough for now. 


  1. Thanks for sharing your story! I am currently getting ready to send my MRIs to Mayfield and am hoping for a consult!

  2. I think you'll be pleased with the attention you get there when you finally get in. The surgeon seems like a good one (hope so, since he's getting ready to cut into my head! :) and he listens well.

    Good luck and let me know how it goes!