Doubts.
I went and did all of my pre-op testing stuff, had a new chest xray, blood work, urine test, ekg, and met with the anesthesiologist who talked to me about how we might have to do the intubation for the surgery.
Because my head is tilted down, I cannot be intubated normally.
Normally, they tilt the sleeping patients head all of the way back, and then insert the breathing tube.
Because my head can't go back, they would do what's called awake guided fiber optic intubation, where the patient is sedated, the mouth and throat are numbed up, but the patient is totally awake and they have to swallow the breathing tube.
Once it's down, they put you totally to sleep with the anesthesia.
I finished all of my testing, and then had to wait about 2 hours for my appointment with my surgeon.
I got there and they did more xrays, about 10 new ones so they could see my neck and shoulder area much better, and then he came in to talk to me.
He said that everything looks good, I've healed up nice, never gotten any infections, I would be in the halo brace for about 3 months, and then he told me about all of the risks.
A 5-10% risk of paralysis, a 5-10% chance of nerve damage, and then he said that he would like me to consider not doing the surgery.
He said that it's a very small risk, but if it happens, if during the correction, they over-correct me, my head would end up facing up, and if that happened, there would be no fixing it, ever.
He is removing 2 vertebrae, bringing my spine back together, you cannot un-do that kind of thing once it's done, so he would like me to consider not having the surgery.
The risk is very small, like a 5-10% chance, but if it happens, it cannot be undone, so I have a wicked lot to think about.
I have to decide if even that small a risk is worth it.
If it gets over corrected, it can't be undone, that is a tremendous amount to think about.
Plus, I have total trust in my surgeon, I know that he would not be telling me this if he didn't have his doubts that this surgery will work, so I have to trust him, I have to really think about what he is saying and go with that.
I have had an extremely emotional night since getting home, been going over this repeatedly, talked to my parents, still thinking it all over and I have some more time to think it over, but right now, I am thinking that I need to trust what he is saying.
Comments
Oh hon, my thoughts are with you while you're making this tough decision. *hug*
Posted by: Dyane | June 10, 2009 9:21 PM
is there a reason, other than the obvious, choking and looking down always, that the surgery needs to be done?
That IS a big risk to take.
Many MANY hugs to you Kat!
Posted by: bluepaintred | June 10, 2009 9:25 PM
Wow. I don't know what to tell you, this is something that only you can decide.
I hope whatever you choose works out for you.
Posted by: Christine | June 10, 2009 11:31 PM
What a tough spot to be in. You will get a gut feeling about this....listen to it. Best wishes..
Posted by: Chris | June 11, 2009 7:35 AM
Oh Sweetie, this is a tough one for sure. I agree with Chris and say that you should go with your gut feeling. I'll be thinking of you and you know my inbox is always open if you need to let it all out. I'm sending positive vibes and lots of hugs!
Posted by: Lara | June 11, 2009 4:19 PM
This is such a scary decision to make. I know you will make the right decision. Good luck!
Posted by: Melissa | June 11, 2009 5:14 PM
I have had this surgery, and while mine is not as extensive as yours (skull to T3), I came through it just fine. My head is tilted slightly up rather than straight ahead because it was the better alternative than tilting downward and sturdier than exactly straight ahead would have been for me. I did have a slight adjustment to get used to it, but it was better than being slightly paralyzed was. Honestly, I don't even notice it anymore. The bone grafting sites on my hip gave me more trouble than anything else.
I think you'll come through this just fine. You are a fighter. I know that your nerves are shot worrying, but I'd try and visualize getting what you want out of this to keep your mind off the worrying.
Posted by: Amy | June 13, 2009 1:56 AM
Kat,Sorry for not keeping up with you. I found your site back during the winter. My Pc was so infected awhile back it had to be cleaned off and download like a new one. So I lost many contacts. I see you have had some more issues. I am sorry, hopefully you have a good doctor or doctor's. I had level 4 neck fusion after a ATV flipped on top of me. It took 8 operations and 7 years. The neck fusion with rod and screws were hard to deal with. I was looking up neck surgery's on Google and found your pictures you took of your steel rod and screws in you neck and that's how I first found out about you. I hope you have good doctors and Angel's of Mercy on your side as you go into this next surgery
Tony
Posted by: Tony | June 13, 2009 3:56 AM