Hello, my name is Grace. I got on this website because of Tardive Dyskenesia Dystonia.
But in 3 weeks I am having serious back surgery by a neurospinal surgeon. They intend to go in, and release the impinged sciatic nerve by boring a bigger opening. Then they are doing a fusion because S1 is cracked. The sciatic nerve has been a problem so long, the pain doctors do not want to do anymore epidurals.
I would appreciate some feedback. This is serious, dangerous things they are doing.
Admit I am afraid.

I had my first laminectomy, bone graft and spinal fusion when I was 16, it gave me 15 years of back pain free life, sure I had other things go wrong, but the fusion of L4 and L5 was pretty solid. Over time, other things wore it down and to be fair, I probably pushed it to its limits with being out and about travelling and all the things a unpunished adult does. It came to a head when I was 30 and the pain excruciating and the beginning of a downward spiral along with the other things that had been troubling me in those intervening years.

It's no good worrying about what might come out of it, try and be be positive, it's ok to be frightened, use the fear to be sure you read up on everything and are prepared to look after yourself after the procedure. I'm sure many of us on here regret doing things that in hindsight we realise exacerbated our initial problem. That doesn't mean you can't get out there and live a life.

I have been ill on and off all my life, in between illnesses I have done and achieved amazing things, travelled the world, won awards, experienced different ways of life and loved and been loved. None if which would have been possible of it had not been for my first spinal fusion at 16 after falling from my horse. Of course they found it would have been needed anyway many years later as I had an undiagnosed underlying problem, but up until then, I was a junior state athlete champion and had my own horse and enjoyed a full on childhood/ teenager life. No regrets.

Tell your Dr you are afraid, find out what you need post surgery and be sure you have it along with people who will help you in your recovery. You will need help for a minimum of 6 weeks just to do the small things like wash your hair, run a bath, wash clothes. Fold and out them away, put the dishes away, clean the house, make the bed, all things we do and take for granted. If they offer to put you in rehab post surgery and you can afford it, seriously consider it.

Good luck, I've had 5 major back operations including fusions. The procedures themselves went well and if had not been for other problems arising all would have been well. My first two fusions gave me a combined 30 years of great living.

I do believe my fear is a great deal more for after the surgery, than the surgery itself. My doctor is at Emory University Hospital and is supposed to be the best neurospinal surgeon in the southern US.

Please keep in touch. It helps to speak with someone who has been through it, (and you, poor thing, many times) I respect you greatly for your tenacity and positive attitude.

Thank you immensely,
Grace

Hi Grace, is it the pain you are frightened of, or recovery once home?

hey,
the doctor's office says I will begin PT day after surgery. will have to meet certain criteria from PT before allowed home. If necessary they will transfer me to rehab facility until their criteria are met for going home. they seem to want me to be quiet and just walk for the first 6 weeks. then PT again. I am primarily worried about the pain the first few days. I am a tough person, with both a high pain threshold, but a strong tolerance for pain drugs and tranquilizers.
Am on 4mg Klonopin now.:hug

Hi Grace, PT always begins the day after, they get you out of bed to stand and show you how to get yourself in and out of bed and even how to breathe. Be sure to listen to the PT, they are good people. My last op, I stood up with the PT and 3 hours later with the help of nurse walked to the toilet. Dr, PT and nurses amazed. It felt good to stand!
I too have a high pain threshold and drug tolerance. They had me on morphine and ketamine pump for the first 3 days and then just morphine pump for 1 day and then down to morphine injections for 1 day and then down to 10mg oxy norm for breakthrough pain and lastly oxy 5mg. On release I was put on OxyContin 20mg slow release twice a day and 5mg oxy norm for breakthrough pain.
I saw the PT every day in hospital and then once a week post release. All was good until 2 weeks post op on the weekend I was outside to fill the dog water bowls and when I turned the tap on my back froze. I stuck it out for the weekend, saw the Dr. Had X-Ray and they realised there is a problem with L2/3 and because L4/5 & now S1 fused L2/3 working harder. I genuinely believe if I had not gone outside and started basic small things so soon I would have been better off, hence why I say, get help for everything 6 weeks post surgery. After my back froze I struggled to even get milk from the fridge door, but, I still carried on.
I've had complications after every surgery because of my high pain threshold, when normal people feel pain they stop doing things, we instead just carry on until it reaches the point we can't. We should stop and recognise our body is saying no, we need to rest now. I don't mean stop everything and lie down, I mean really limit bending, lifting, straining, stretching or reaching out. Yes to walking, yes to PT exercises and no no everything else including pulling the covers up and making the bed.
If you live on your own or even if not, get a stock of ready made meals into the freezer, better yet, get one of those healthy weight loss companies that will deliver all your 3 meals and 2 snacks for each day delivered every week. In Australia we have a company called lite n easy. It takes all the pressure off from shopping, driving, food prep etc. Get someone to be there to unpack the meals into fridge and freezer and voila good to go. Don't stack or unpack the dishwasher, hand wash dishes as you go. Get someone else to clean house, load and unload washing machine, strip beds and remake. Anything else can wait!
Tell your anaesthetist you have a high pain threshold and drug tolerance and tell him/her you are frightened post surgery the pain relief will be insufficient so he/she can be sure to write you up for the correct amount of pain control. Otherwise nurses won't believe you!
It sounds a lot, but really, the hindsight of others can help you immensely.

Welcome to Neuro Talk. It is OK to be afraid. Anytime your spine is worked on, this is normal. Glad you found NT. I did the same thing and came here before my last spinal fusion. Found support, and lots of friends to get me through it.
If you have had all the tests, and more than one doctor agreeing, this is most likely the best action. There are many people on NT, that have had successful spinal fusions. I will keep you in my thoughts and prayers. ginnie

Hi, I am 2 weeks out from surgery. Trying not to panic. See my wonderful psychiatrist tomorrow. I trust God will get me through all this. I will be at Emory Univ. Hospital Downtown Atlanta.
Best Neurospinal Doc in the south, they say. I will keep you informed.

Grace

I appreciate so much all the info. My sister, friend, and husband will have to take care of me. I too, have 2 dogs, and they will be a worry regarding hurting me in some way. They are not going to understand the restrictions.
Amazingly, I have a Pain Doctor who is an anethesiologist, and over the 2 years she has been seeing me for epidurals, we have become friends. If I cannot get out of pain, from the drug pump. I will page her. She will fix it. They have already been told morphine does nothing for me, so if that is all they have don't waste their time. Doctor assures me, he has something that will work. I have already told him I will call Colette if he doesn't.
I am 2 weeks away from surgery. Very afraid.

Grace

Hang in there Grace. I know that fear you feel. I really did freak a time or two. Maybe cry and release some of that worry. I did plenty of that too. No one wants to go through these surgeries, and it is OK to feel scared. Just remember there can be very good outcomes. Make sure you tell you surgeon how scared you are, he may be able to offer a bit of comfort before your surgery date. Sometimes an extra word or two from the doctor relieves some of that stress. ginnie