I had an L3-S1 fusion a year and a half ago and now have herniated disks and stenosis at L1/L2 and L2/L3. My spine surgeon is recommending extending the existing fusion up to T10. Has anyone else had a total lumbar fusion extending into the thoracic spine? My range of motion is limited now and I'm wondering what it's going to be like when I'm fused from T10 to S1.
I'm fused from T4 to S1. Yes, it definitely reduces your range of motion, but it was the best thing to do for me. I was having excrutiating pain and was quickly heading for a wheel chair. I still have pain, but it's more easily managed with pain meds and I no longer see a wheel chair in my future. It's drastic, but that doesn't mean it's not the best choice. I would, however, be sure to get a second opinion. Once it's done, you can't unfuse it.
Actually, I was fused in exactly those places. For me, it turned out to be a disaster. I am MUCH worse now than I was before surgery. Much worse with the pain and mobility. And just hard to do the activities of daily living. Not only am I paying the price of my decision to do this, but my husband, my sons, and even my parents are. All the work falls on them, and like domino's;one by one, each one of them gets sick (in their own way) by what happenned to me. And their's the financial toll as well. My premium's went to over 2300 bucks a month just for ME. Yeah, you read that right. I know it had something to do with that surgery, and now all that Pain Management I need now. That doesn't even include dental, eye, or psych. And, with that, I have a 2500 dollar deductible. Was I better off before surgery when I could drive my 13 y.o. to and from school myself, go out with the family once a week, cook a simple meal ,you know enjoy the simple things in life and only needed Vicodan ES for pain? ..You bet I was....Janiee
Janie, I'm so sorry you're so much worse off. Have you applied for disability? I got it and was under 50, which makes it much harder to get.
Everyone's different. The root problem has a lot to do with the success of the surgery, but even two people with identical problems may have completely different outcomes. That's why surgery should always be a last resort. Even as a last resort, the outcome isn't guaranteed. I was desperate enough that I was ready to dive right in, and I was so blessed that it turned out well for me. So I repeat, second opinion! Always!
Rgsmoose, it's a hard decision, but if you decide to go ahead with it, remember your reasons for the decision and don't look back. You'll just make yourself crazy with second guessing yourself.
I wish you the best as you try to figure out the best course of treatment.
Emily, I can't get disability because I haven't worked for the passed ten years, and the lawyer I talked to said my husband made too much. We are what some would call "insurance poor". Surgery was the last resort in my case Emily and my surgery was done @ the spine institute @ the Cleveland Clinic by the best Ortho there....Janiee....P.S. Since I've been with my new PM (not C.C.), I often wonder why the C.C. didn't offer me radio frequency ablation +/or SCS BEFORE surgery? Well I better stop here; don't want to hijack rgmoose's thread.
Last edited by janiee08; 02-05-2010 at 10:22 AM.
Reason: forgot something
My case is unusual. My surgeon has never seen another spine like mine. The first orthopedic surgeon I saw took my records to the Cleveland Clinic with him to get some feedback on what to do with me. He goes up there once a month. His answer was that he had no idea, but he gave me the name of the wonderful surgeon who ended up figuring out a plan and doing my surgery. He said if anyone could help me, that doctor could. He was right, and I will be forever grateful to my surgeon!
What your husband makes is irrelevant to your disability case, but the lawyer is correct that too much time has passed. Maybe he was talking about Supplemental Income. That's based on the income of the household. That's rough when you fall into the crack in the middle! I hope you're getting at least some relief from your pain.
Well, I went ahead and did it. I had the surgery last Monday, 2/15. It was a revision laminectomy at L3/L4, new laminectomies and L2/L3 and L1/L2 and exending the previous L3/S1 fusion up to T10, so I'm now fused T10/S1. I had both an ortho and a neuro surgeon (I think they play tag-team in the OR with my surgeries, as they've done most of the other 7 surgeries). They both told me it was one of the most challenging surgeries they've ever done. In order to use the existing rods as a base to extend the fusion they had to remove the top pair of pedicle screws. The problem they ran into was that I apparently grow bone really quickly, as both of the screws were totally encased in new-growth bone, after only 19 months. They had to chip the exces bone out using hammers and chisels before they could remove the screws. That must be part of the reason for the current level of pain. The incisional pain is greater than any of my other surgeries, which makes sense due to the length of it - about 15 inches.
The first few days in the hospital were strange due to lots of extraneous noises from my spine - creaking, squeaking, groaning, snapping and crunching. There were several times when my spine snapped loudly and seemed to shift. All this bothered me, but they told me I could expect some of that. It finally has subsided, but I'm still wondering about it. Has anyone else that's had an 8 or more level fusion had something similar happen to them? I realize there not may be too many people that have had similar surgeries. I'm just wondering if there's anyone else that's gone through something similar. All the nurses and physical therapists that come around in the hospital asked about my surgery and didn't seem to believe what I was telling them until they saw the length of the incision. Then it's "I'll have to check up on something before I can answer - I'll get back to you on that."
Anyway, each day is better than the one before. The start of the recovery was the worst I've ever had. I didn't realize that so many Mack trucks could fit in the recovery room at the same time, as they all seemed to run over me as soon as I woke up. I am hopeful I'll continue to get better so I can finally get off all the pain meds. That was the reason I went through with this surgery. I don't expect pain free and can live with some, as I have for the past 25 years or more. I just want to get off the narcotics once and for all.
So, any other people with excesively long fusions that can offer their history?
I had that creaking noise, too. It was alarming and disconcerting! My husband could even hear it when I carefully turned over at night. Very weird, but apparently normal. As I fused, it got less and less and is now gone.
Are you trying to walk as much as you can? Don't overdo it, but walking is essential to get blood circulating around the spine to stimulate bone growth. Not that it sounds like that's a problem for you! What you said about the screws being so encased in bone that they had to chip them out --- that would make sense that it would give you more pain. People who have the bone graft taken from their hip often find that site more painful than their back. I had one of my hooks removed (long story) and it was grown in. I had a lot of pain from that because of the trauma to the surrounding bone and tissue.
Keep up your positive attitude. You're on a good road to recovery already, and the good attitude will help a lot!
I went in to the surgeon to get the staples removed and he took x-rays to make sure everything was in place. From the x-rays he found the reason for all the creaking and groaning noises -- both of the new rods are broken right where they were joined with clamps. So now I'm scheduled for revision surgery Monday, 3/1. They tell me they have to replace the new rods and will be adding more clamps, so I'll end up wth two clamps on each rod.
In the interim I have to live with the noises and the cracking and snapping. Every once in a while I'll get a really good one that feels like my entire spine is shifting and I've got a pain in my upper back that gets pretty severe, but it atleast isn't constant. I was also fitted with a custom made brace from my groin up to my neck. I sure hope this will be the last surgery -- I'm geting real tired of them.
So I guess I answered my own question of lengthy fusions - they're not done very frequently and I'm seeing some of the reasons why. Avoid them if you can.
Hi rgsmoose and blueatlas, I am also fused extensivly. S1 to T4. My first surgery was for Scoliosis from L4 to T4. My last surgery was S1 to L4 in Sept. 2008 and it failed. Loose screws and the level between L3 and L4 didint fused well. Revision surgery is in my future as well RGSMoose! Good luck and hopufully this one will be the last! Just think positive. If nothing else the 3 of us definatly seem to have "experience" ! Please update as soon as you can. Two of my Docs siad I was unique also, seems like theres at least us 3 out there! We should all stay in touch. Take care and good luck agian!
[COLOR="Navy"]I'm fused from T9 to my sacrum. Went in to have 3 disc replaced. The normal lower lumbar ones. What was suppose to be a 3-5 hour ordeal was 8 1/2 hours. It was harder than they anticipated.
The next morning when they came to get me up to walk after the sugery I got as far as a sitting position and felt a loud POP inside. I told them to wait, that something broke. Nope, they told me...everybody feels that way. So they got me up to walk twice a day for a week with me grittin my teeth. What's your pain level on a scale of 1-10? 14! My surgeon was out of town and no one was listening to me.
When he returned he came in all cheery and happy. What's this? can't leave you alone? Told him I was losing my mind. I couldn't control the pain. The nurses told me it should be getting better, it's only worse. I can't walk, my left leg is dragging and I can't stand alone. He turned a funny shade of pale and told me to stay in bed and we'd do ax xray in the am.
Next morning he comes into my room. I have some good news and some bad news. Good news is that you are not losing your mind. You're justified all the pain you're having. Bad news is that your back is broken and we need to take you back into surgery. Another 7 hours and I'm fused from T9 to my sacrum. Not what I signed up for!
So, I am now in PM as my surgeon told me that I will live with some degree of pain the rest of my life. I didn't plan on being on narcotics the rest of my life either....[/COLOR]
I came home from the revision surgery last Friday, 3/5. This time there hasn't been a squeak, creak, groan or snap at all which makes me very happy. All those noises before were scaring me, as I knew something was wrong. This time I'm told the rods and clamps are solid and are not moving at all, which is a good thing. This custom brace that extends from my groin to my armpits also helps keep everything in place and adds a lot of stability.
My goal in having this surgery was to be able to get off all the pain meds. During my last hospital stay I had to double up on some of the MS-Contin doses as the incision pain was pretty severe. Now that I'm home and back in my own bed it's not as bad and I'm cutting down on the doses. Pretty soon I'll be back to what I was taking before the surgery and then I can start cutting back some more. I am confident I can get off these meds now, as I am feeling a lot more stable and less painful every day. I will continue to see my pain specialist for a while, but as I told him earlier, my goal is to get to the point where I can ignore him.
If someone had asked if the surgery was worthwhile before the revision I would have had a different answer, but now it's looking like I'm going to get the positive result I was looking for. I may be more restricted in my range of motion, but I'll be able to live with that if I can just get off the pain meds and back to a somewhat normal life. I've gotten used to having less motion in my neck due to the C4 - C7 fusion I've had there, so I'm thinking I can also get used to my new T10 - S1 fusion. It's early yet, but I'm thinking positively already.
Thanks for all your previous replies. I'll keep you posted on my progress and will someday be able to tell you I'm off the meds and back to a semi-normal life.