SUPPORT HELP ~ JUne 30th Skull to T4 Infusion with Drug induced coma
 

My name is Zena and I am a 47 year old wife, mother of 3, and a grandmother of 2 boys. I am sure you got all that from my profile, but I thought I would just throw it out there anyways. 1In 1964 I was 2 years old and I feel 8ft on my head and had a complete skull fracture, which caused me to be in a coma for 22 days. During that time in the hospital they discovered I was born completley without a C1 verterbre. Since my body was not done growing I had to wait until I was 28 for a neck fusion using my own piece of pelvis bone. This was the year of 1991 as I was a mother of 3 babies under the age of 6. The procedure consisted of taking out a pice of my own pelvis bone and fusing it to my skull and C2. My pelvis was now my C1. I was put into a halo for 6 months. I did fine for about the year of 2000 when I started to go numb down my arms and I was in sever chronic pain. Finally in 2002 I recieved a fentanyal pain spinal pump. I was still having massive pain, which we couldn't find the source until 2010. I went to the "OREGON HEALTH AND SCIENCE UNIVERSITY" to find out It was only a matter of time before my spinal cord would completly blocked causing me paraylisis. So the doctor decided to tell me and my family that I am going to have complete verterbe replacement with cadaver bone from the skull to T4. I will have bolts connecting my verterbres in the front and back of my neck/spine. They will also be replacing the wired from my 1991 infusion with new bolts. They told my family that they will be going through my throat to remove the front verterbres and replace them with cadaver bones and fuse them with bolts. They will then go behind from my skull all the way down to my shoulders. They will have me hooked up to electrodes to watch me through the surgery incase I become paralyzed. I will be put into a drug induced coma for 3 days afterwards all the while being on a respirator and feeding tube. They say I will have to re-learn how to swallow again and that it could take months. I will be put into another hallow for 6 more months. I AM SO VERY SCARED! I want to beable to play with my grandbabies again, and be there for my kids and husband. Has anyone ever went through this and if so please give me advie, comfort, support, and knowledge, hope and prayers...Much Love Zena

HOLY TOLEDO! Bless your heart dear Zena, I've never heard of such a thing, and I've been on various message boards for 12 years!! I have a feeling you will be written up in medical journals! :eek:

I imagine you are scared, but it sounds like you are in the hands of excellent surgeons! Knowing that, I think I would feel alot better. ;) I think the hardest part is going to be recovery. You're going to have to be very patient and determined during that time, but I KNOW you'll do well since you have your kids and precious grandbabies. You already know what it's like wearing a halo, so you have that beat. ;) I think you are a VERY strong woman, Zena and you'll come thru this with flying colors.

Just know that we will be waiting to hear from you when you're able to let us know how you're doing. When is your surgery scheduled? Let us know when you know, ok? God bless and try not to worry. Hugs, Lee :)

will be thinking of you
 

Zena: thank-you for sharing your life/story with us. I am brand new to site, so not much experience with chats. Please keep us up to date with your progress when you can, but just know we are all praying for you. Your docs sound like they have a very well thought out plan for you, so your are in very good hands. Pam Z.