Tag Archives: craniocervical instability

Another Appointment

So Tuesday morning I am going to Little Rock for my appointment with a geneticist.  I’m pretty nervous because I’m not sure what is going to happen.

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(Addy is having a very relaxing Easy)

I am hoping they will refer me to the other specialists I need to be seeing. Since moving here from OKC about a year ago, I’ve only gotten a pain management doctor in the state, and that was a complete disaster. I’ll write a post about that experience sometime in the near future,  it will make me too angry if I try to do it now.

I know I need MRIs of my brain and spinal cord. Since having surgery for Chiari Malformation,  I am supposed to be scanned every 6 months and it’s been over that.

I’ve been having significant numbness in my hands and, recently,  my feet and arms. This scares me because it is one of the symptoms of Syringomyelia,  the hole in my spinal cord, getting worse.

Also, I’ve been having a lot of neck pain, sort of like someone is jabbing a knife around in there. I know I have craniocervical instability and that will most likely need to be fused. That type of surgery scares me a lot, but I know it would help a lot of the pain go away, so I will go through with it if suggested.

I’m interested to see what the process is at the geneticist office and I’m really hoping they will refer me to some good, knowledgeable doctors.

If you have been to a geneticist,  or have any of these conditions,  I would love to hear about your experiences: Chiari Malformation,  Syringomyelia,  Ehlers-Danlos Syndrome,  craniocervical instability,  spinal fusion, Tethered Cord Syndrome,  POTS,  etc.

Hope you all have a great Monday morning!

Hugs, Kat