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.
(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
May 19th, 2014 at 11:49 am
Good luck tomorrow! Looking forward to what you think of the experience. Hope you guys had a good Easy.
Marty and Mom
May 19th, 2014 at 1:27 pm
Thank you! Addy sends sandpaper kissies =^..^=
May 19th, 2014 at 12:35 pm
Your a very brave woman. Your aloud to be a scared. If not in body I’m right there with you in spirit.
May 19th, 2014 at 1:26 pm
Thank you 🙂
May 19th, 2014 at 9:54 pm
Wishing you the best. That stuff you deal with sounds scary as hell. I hope you finally find a doc that can help. *hugs*
May 19th, 2014 at 10:48 pm
Thank you, it is pretty scary! I’ve had this appointment for over a month, and the closer it gets, the more I worry about it. Ill be freaking out pretty good by tonight! Addy sends sandpaper kisses 🙂
May 20th, 2014 at 1:45 am
Maybe they will find out that you really are part cat… HA!
May 20th, 2014 at 2:13 am
Maybe so…
May 20th, 2014 at 2:29 am
then I would allow you to do a blog as a cat
May 20th, 2014 at 2:36 am
Ahh good! I was getting worried there fur a little while! I can’t help it if I have multiple purrsonality disorder and one of them is a cat!!!
May 20th, 2014 at 2:38 am
no… thinking you are a cat is not good enough… you need genetic proof that you are at least part cat… then it is okay… sort of…
May 20th, 2014 at 2:50 am
Hmm. Okay. I will post the documentation tomorrow evening or Wednesday, depending on when I get back =^..^=
May 20th, 2014 at 2:51 am
good enough
May 22nd, 2014 at 10:30 am
your blog is amazing! come check mine out at: http://androguyandcathere.wordpress.com/
March 26th, 2015 at 6:08 am
AdderCatter, I live in Little Rock, have EDS HM, and POTS, but am having problems finding physicians who will treat me or even know what craniocervical instability or Chiari are. I have been directed out of state for my POTS. What doctors do you see?
March 26th, 2015 at 6:23 am
Hi, Rebecca! I’m so sorry you suffer from these conditions. There is a neurosurgeon I recently learned if in Fort Smith who specializes in Chiari! His name is Dr. Capocelli. I believe he also has an office in Little Rock. After I have my baby, I am going to see him because I’ve heard such great things about him and how successful he has been at revising other doctors’ decompression surgeries. Try to Google him, but if you can’t find him, let me know and I will get you his contact info. I just don’t have it handy at the moment. Hope this helps! Please let me know what happens! 🙂
January 30th, 2016 at 9:33 pm
Rebecca did you ever find a suitable doctor? I have now seen Dr. Capocelli in Little Rock twice and he is AMAZING!!! He studied in New York at The Chiari Institute!