Spinal cord is twisted, Severe pain for 10+ years. SCS?
Posted , 5 users are following.
So I finally found out some of the reasons my back has hurt me for so long. My Thorasic spine is twisted from the cervical-thoracic junction where it starts, it is completely sideways by mid thoracic spine and rotates counter clock-wise back to a nearly natural position by the Thoracic-Lumbar junction. There are many other issues present and the Neuro Surgeon and my Pain management dr both said the Spinal Cord Stimulator is the best option for me now. There would be far too many fusions required to remedy all of the issues and he doesn't want me to start down that path unless I don't have success with the SCS. I'm terrified because when they placed the leads for the trial I was wide awake in spite of the IV meds that they gave and It was complete torture!~The leads also moved and there was an added complication because of the twist in my spinal cord, so Stimulation was not aquired on the left side of my upper back. They were able to reach the part right beside my spine and found out where the leads would need to be placed.
I'm scared because I don't want to be awake and feel the leads being pushed through my spinal cord space again. That was unbearable! Has anyone else had the SCS and how long did it take to recover?
0 likes, 18 replies
carol78519 Annab1983
Posted
Hi! Your twisted spinal cord sounds awful!! I have a St. Jude SCS - since 11/15.
I was awake during the trial with some light sedation. I did feel them placing the leads and it while it wasn't excruciating, it wasn't pleasant either. I could feel when it hit a nerve and my leg jumped each time.
When they implanted the permanent SCS, I was under general anesthesia. Didn't feel a thing. I was kept in the hospital 1 night and was able to press a button to administer my own pain medication.
For me, my overall recovery turned out to be pretty easy. I only used pain pills for 2 days. I was pleasantly surprised.
IMHO - I much rather preferred getting the SCS implant than a major fusion surgery with a very long recovery and no guarantee that it will relieve your pain.
If I were you, I would talk to the surgeon about your fear of being awake during the surgery and ask him to give you anesthesia. Maybe he doesn't know how you feel and you should make him aware.
Good luck to you! If you have anymore questions, please let me know. And keep us posted n your journey.
Carol
Annab1983 carol78519
Posted
Hey there Carol,
Thank you so much for the reply and encouragement. I saw the neurosurgeon Thursday before last and was able to talk with him about my fears. He was amazed that the other dr let me suffer like that. I was pretty shocked too honestly. So he said with the procedure I'm having Laminectomy and then placing the paddle leads and battery implant that he uses general anesthesia. He warned me already that its a really crummy 2 weeks afterward. He's had 1 patient that went back to work 1 week after the surgery but moved the paddle and had to get a revision. So I guess I will listen to him and just take it easy for the 2 weeks then try to accelerate.
I'm worried that I'm going to be in really bad pain but I know that it is temporary. They will do it as a day surgery and I will be home that night. Surgery is scheduled for the 27th of March. I've seen lots of video posts about different steps in the recovery process but there's not much from the patient perspective on the paddle lead implantation to be found. So I'm hoping that I will feel well enough to document my journey for someone who comes after me. Give them insight and an honest opinion. I like to know the good and the bad possibilities because you never have a guarantee either way.
Thanks again so much! Hopefully my surgery will go as smoothly as yours did.
dianneg carol78519
Posted
Carol, I will be having the trial of the St. Jude pain stimulator with Boost this Thursday. I had a previous pain dr and a couple of years ago I had the trial of the Medtronic SCS. The pain dr never was able to get it in place at all. My pain is on my left side and down my left leg, he was only able to get the placement on my right side and down my right leg. It would be funny if it wasn't sad. He was getting upset with me because he couldn't get it in the right place. He kept saying that "it has to be in the right place".
You mention that you had pain when they hit the right spot and your leg jerked. Since my Medtronic trial never got to the right spot I never considered having any pain with the trial. Now I am concerned, I have had so much pain the past 6 years that my nerves are on edge all of the time. I had a lamenectomy 6 years ago this May and the Dr ruined my back. I was in a lot more pain after the surgery than I was in before the surgery. I went to a different Neurosurgeon and after looking at my new MRI said that the previous surgeon left "debri behind". What is debri anyway?
I then had a fusion of L4-L5 and a year later I ruptured another fusion L3-L4. I have always been in pain but not as much as I was prior to my post lamectomy. Move forward to the summer of 2016 and my sciatica started hurting as much if not more than all of my back issues. I had a MRI and among many issues I have nerve entrapment in the scar tissue from my previous surgeries.
I have tried absolutely everything to no avail, so if the trial and implant doesn't work then, well then I don't know what I will do. I know that I don't have any choice if I want the trial but just how bad was the pain when they hit a nerve? I just want to prepare myself. I think that it is odd that neither my pain dr nor the Reps from St Jude mentioned me being awake with or without a "twilight" type of anesthesia.
Thank you so much for your time and you have given me hope that I might be able to join the world again.
Dianne
Annab1983 dianneg
Posted
Hey Dianneg,
They should at least twilight you and give you a local. Hopefully your experience will be much better and it will provide you with good relief. They have to know where your getting stimulation. Do you know why they coundn't get any stimulation on that side? I'm so sorry that your hurting so badly. Hopefully there will be a reprive soon for us all. Good luck!
dianneg Annab1983
Posted
Thank you for your reply Annab, I don't know why that Dr couldn't get the Medtronic into the right spot. I know that the Dr was getting frustrated and it seemed like he was blaming ME. This is the same pain dr who put morphine in my trial of the pain pump. I am highly allergic to morphine, this was on a Friday and when I tried to call said dr they refused to get a hold of him. When I saw him on Monday his comment was that he didn't know I was allergic to morphine. I showed him in my chart of the information that I gave him with 3 inch letters "ALERGIC TO MORPHINE".
I now go to a different pain dr and that is the Dr who will be doing the trial of the St Jude SCS.
Thank you again.
carol78519 dianneg
Posted
The pain when they hit the nerve (finding he right nerve?) wasn't bad at all. It mostly just surprised me when my leg jerked. I told them "my leg jerked" and they said that was normal. Not too worry.
carol78519 dianneg
Posted
dianneg carol78519
Posted
Thank you for telling me that Carol. I feel like my nerves are so sensitive right now, from all of the pain that I have been through.
I was actually starting to feel better a little over a year ago and then I found out that I had breast cancer. I had 2 surgeries and 6 1/2 weeks of radiation therapy. It was shortly after that, when my severe back pain came back.
I appreciate you telling me that I won't feel the pain too much.
carol78519 dianneg
Posted
I'm so sorry to hear about everything you've had to endure!! Breast cancer on top of everything else?! I know what you mean about not wanting to hurt anymore than you do now. Even something that sounds so small, like I have arthritis in my pinky finger, and people think " well, it's just a finger! But add that painful finger on top of all the other pain....it becomes the straw that broke the camels back. So I totally inderstand. One thing to look forward to....is relief that you will get from the SCS.
dianneg carol78519
Posted
Hi Carol, how are you doing? I have started the trial for the St Jude SCS a little over a wheel ago. I am suppose to have it removed on Monday but I am not sure if it has worked enough. I will either have it removed or they will extend the trial for a few days.
You mentioned arthritis in the pinky, I totally understand what you mean. While I am dealing with my back and now the trial, I have tendinitis in my right elbow. I had a cortisone shot in my elbow but it didn't give me relief. After I finish the trial of my SCS I will try another cortisone shot in my elbow. Sometimes I just get so tired of all of it.
When they put the trial in, it was uncomfortable but not too hard. The next few days after getting it put in was extremely painful and I was told to wear my back brace 24/7. I couldn't even tell if my regular back pain was there because of the pain from having it put in,fortunately it got a little better after a couple of days.
The Rep said that it doesn't hurt everyone when the trial is in, she said that if it hurt me that much for the trial then having the surgery of the pain stimulator will really hurt. Oh Joy. Something to look forward to.
Dianne
carol78519 dianneg
Posted
Nice for the rep to tell you you will have more pain with surgery for permanent. Oh joy!!
Do you have the trial turned on when you're sleeping? Does it help you sleep better? That was a big factor for me. I used to dread going to bed because I would toss and turn all night trying to get comfortable.
If you're not sure if it's helping, I would keep it a little longer and ask the rep to make some changes to the programs. I have had to have "tweaking" of my programs several times - when I feel like it's not working.
i guess that I have been lucky with the low amount of pain I experienced with the trial and actual permanent surgery. At least my body is doing one thing that's good!
dianneg carol78519
Posted
Carol I am sorry that I am just now seeing your post. I finished the trial and it was so so about working. I went ahead with the St Jude SCS and I am about 6 weeks post operation and have had 3 or 4 "tweaks" so far. It hasn't helped very much at all so far. Actually today is a particularly bad pain day, actually I am thinking about crawling out of bed (I do mean crawling) and taking another pain med.
The actual surgery pain was beyond painful, I had no idea that my body could hurt this much. I have had 9 surgeries in the past 6 years so I know pain. Three of them were for my back and 2 for breast cancer last year. Nothing hurt like this surgery.
I just don't know what to do at this point, I am so tired of pain, I know that it isn't helpful to be on strong pain meds. I go back to my Neurosurgeon next week and I am hoping that he will release me for physical therapy and water therapy.
How has the SCS been working for you and which one do you have in?
ashlee225 dianneg
Posted
I totally understand the trail pain. It was worse then the sitica pain. And to turn at night forget it!!! I have the implant it works need adjustments still buy st. Jude's is amazing about showing up and really working with you as a person.
nancy43771 Annab1983
Posted
Annab1983 nancy43771
Posted
Thanks Nancy,
He said that he will do a laminectmy and attach the paddle at the top end of the Thoracic and if they need to check placement, he will wake me briefly and then knock me back out. Speaking with him really did help to ease my mind some. Now its just the recovery I'm not looking very forward to. I've read postings from people who had both types of SCS and she said that the paddle was WAY worse than the leads. She was honest which I appreciate but its still a little daunting to be sure. I will let yall know my experience as soon as I am able to. Thanks everyone for all of your replies! It means so much!