Ahhhhhhhhhhhhhhhhhh!
So here is my latest news of my medical journey :(
This past thursday I met with my Neurosurgeon and we talked about a lot of stuff... (Sorry this post is late but I was having a hard time dealing with all this new information...)
Below is one of the things that we talked about...
Craniocervical Fusion: Craniocervical fusion is performed for spinal instability.
An unstable spine means that the integrity of the spinal column has been compromised. Movement of the vertebral bones and discs becomes abnormal.
My skull is not supporting holding up my head all alone. It is most likely due to the amount of skull taken out during the lower cranial decompression surgery. This is causing a lot of pain in the lower part of my head and my body to ache more. It's causing a lot of pain and pressure on my spine from top to bottom.
The fusion usually involves several adjacent vertebrae and may include fusing the upper cervical spine." From cranial (head-skull) to vertebrae C4 or C5 fused together as one.
Dr. Chandler and Dr. Deutsch think Craniocervical Fusion may be an option for me due to my spinal instability.
Scariest part is that I would not be able to turn my head at all. Some people have said that they have "some" movement since the surgery, but it is very limited.
(Depressing...)
But... Good news FOR NOW is Dr. Chandler thinks our best bet to deal with this for now is to play around with medicine...
AND I say Thank GOD! I think this sounds like a great IDEA...
Pray for answers is all I can do daily... And dwell. Which is so sooo not good but my mind is so lost...
I found out a few people have gone to New York to a special Chiari Institute and they have GOTTEN SO MANY ANSWERS...
Now I just have to pray for my way there!
http://www.chiariinstitute.com/
Dr. Chandler also decided to up my medication. Neurontin. From 600mg to 1200mg... Yikes. Today has been my fist day... I went from 600mg to 900mg... Tomorrow I will start the 1200...
Neurontin is an anti-epileptic medication, also called an anticonvulsant. It affects chemicals and nerves in the body that are involved in the cause of seizures and serious chronic types of pain.
I am always worrying,and thinking about you. And you are never far from any of my thoughts! And you are always in my prayers!!
ReplyDeleteYou are my baby sister, and I would do aanything possible to help you, and if i was able, i would take all of this away! All the pain, and worry, and problems! But all i can do is be there for you, to listen, talk, be a shoulder to lean on. And i am always here for you through it all.Anytime of day, and in the middle of the night. Im always a phone call away, ready to listen, and offer anything i can do! i love you always!