Just an update to people who follow me and my Chiari journey:
I got a call from St Peters Spine and Neurosurgery, where I had my first surgery, and since my neurosurgeon is unwilling to do the procedure that the expert in Long Island suggested I have , they have agreed to refer me to the Neurosurgery practice at Albany Med. The practice has accepted me based on my records and I am going to set up an appointment as soon as possible.
I requested my consult notes from my visit to the Chiari Institute in February with Dr. Rekate, and learned some interesting things that many of the doctors I have been to failed to tell me. I will now be exploring the possibility that I am hyper mobile in my joints and that's why the surgery that I had didn't work as well as it should and eventually led to instability in my neck. Also, I found out that I may have syringomyelia based in my MRI read by Dr. Rekate. It just goes to show you that if someone doesn't see something enough, such as a radiologist, the chances of them missing something get higher and higher with the rarity if your conditions.
As I wait for the appointment at AMC I am starting to explore long term pain control plans that will enable me to live a less restrictive life. Right now I am functioning on some pretty high level meds. My neck decided it didn't want to turn or move a couple of weeks ago, so after trial and error of muscle relaxers, I'm on Valium 10mg in the morning. I had tried flexeril, fioricet, skelaxin and many many herbal supplements. I try to stick to those before I go to any pharmaceuticals due to side effects and lasting effects on the body. I still faithfully take my valerian and magnesium as part of my regimen, but they just weren't cutting it as far as ability to maintain the kind of function that I need. I'm on Percocet at night to help with the headache that I always ultimately get after a long day at work. I hate being on these meds because it's very easy to become dependent on these drugs and that is the last thing that I want to happen. THE LAST.
My sleep doctor thinks that I may have central sleep apnea, even though I have tested negative for apnea before. I have had positive signs of narcolepsy in the past, and both the apnea and/or the narcolepsy have everything to due with my neurological issues. I am on double the amount of the med that I was on before, and unfortunately, although it keeps me awake and more focused throughout the day, it gives me an even worse headache by the end if the day that I am used to. I have a sleep study on April 15th and I'm going to bring it up.
All of the meds that I am on are already doing a number on my body and I am anxious to remedy the mechanical problem that I have so that chemically, my body can balance itself out again and reboot. I would be willing to take all the vitamins in the world and be able to function, and throw all these pill bottles away. My body needs to cleanse itself of the synthetics that I have put in it and rebalance.
My goal for my life this year is to take it back. To make my decisions based on what I want to do, and not what my body wants to stop me from doing. I want to spend more time with my wonderful friends, and become the active person I was before this mess all started.
If anyone has any questions about anything that I have written about, I would be more than happy to answer them.
I love you all and wish you nothing but the best!
