Text Size: A A A
SpineUniverse Community Advice
Get help and share your story with others who know what you're going through.
Please register or log in to join the discussions!

Post op l5-s1 fusion & Nerve decomp problems. (Grade 2 Spondylolisthesis)

From: loveandjunk - on 06/13/2011 8:28pm

Hi,

I'm 21, I had my surgery on 5th April 2011, so 10 weeks ago I think that makes it. Before the op, I had severe back pain and pretty bad leg pain due to a trapped sciatica. The surgeon told me that I should expect full recovery in regards to the sciatica, however, with the back pain, on a scale of 1-10 (10 being worst) and where I was a 9, I should HOPE to get down to maybe a 7... It doesn't sound like much, but that'd be a Godsend for me, and I don't believe in God. Anyway, since the op, unfortunately my back pain hasn't decreased, but I knew there was a high possibility of that, because the op merely strengthened my spine with screws, rods and a bone graft & decompressed my sciatica.
However, even though the leg pain on my right side has gone, I've had leg pain on my left side, where I never had pain before.... by pain, I mean, I literally was unable to walk, I got put back on bed rest for another 2 weeks. I went back to see the surgeon who gave me Gabapentin to take for a month (it's now been extended to 4 months) in hope that it's just the muscles spasming and the nerve being so close that it's feeling the full force & effecting me. I wish I knew how gabapentin worked, but it seems a mystery to everyone, it seems to be working though, which is making me think it must be the nerve... It's added an extra waiting time to my worry, will I need more surgery or not... I'm hoping that one of you guys who stumbles across this will may have had a similar experience to me and tell me your thoughts on what happened & what the outcome was? It'd just be nice to have some input. It's just stressing me out a little!
Also, how does everyone else deal with the back pain? I do physiotherapy, exercise, pelvic exercises etc, but it never seems to change anything. Mine intervenes with my everyday life, it has since I was 11 and until I got diagnosed with this condition when I was 20, no one believed me, does anyone else ever feel like just closing off and giving up?!

Do you find this discussion helpful?
1

7 Responses

Like/Dislike
0
on 06/14/2011 12:53pm

Hi love,

So sorry to hear you're still dealing with so much pain after your surgery. I've got Spondyloslisthesis (grade 3), spondylolysis (pars defect/fracture), and all the fun stuff that goes along with it! LOL!

I've recently had a big flare up and had another epidural (which didn't go well this time). So...I'm being fitted into a chair back brace and utlimately it looks like I'll have to have a 2 level fusion (L4, L5, S1) in the very near future.

Back surgeries are such a gamble it seems...like opening Pandora's box. But - one thing that struck me about your post is that you're only like 10 weeks out. I'm sure there is alot of internal inflammation and adjusting going on. There is still hope that like 6 months from now, you'll be feeling better. I know it sux and I feel ya when you talk about it interfering with life and just feeling so frustrated in trying to live with the pain. But, try to keep your spirits up and maybe with more time, it'll just get better, ya know?

Have you asked your doc if you're maybe expecting too much too soon? Like, did he say that it can take months for full recovery and things can get better when you get a little further out?

Just hang in there and hope for the best! Keep us posted!

Like/Dislike
1
on 06/14/2011 2:11pm

Hi loveandjunk - I had my third fusion surgery at the end of February (my first and second were in 2004 and 2006). I'd read somewhere that most people who have multi-level fusions in the lumbar area have success rates as follows: A one level fusion has a 95% success rate meaning that after one year the patient can return to work for at least five years. Two levels has a 75 % success rate. Three or more has less than 50% chance of just relieving 50% of the pain; those patients almost never return to work on a full-time basis. Plus, with three or more levels fused, the patients tend to blow out the discs above and/or below within 2 years requiring more surgery. That's what happened to me. I have a condition called spondylolysthesis from a transitional (extra) lumbar vertebrae, as well as degenerative disc disease (I'm over 50). But please don't panic. When I first read those stats, I freaked, too.

Anyway, back to your issues with Gabapentin aka Neurontin and residual pain. I'm now taking that, too, since the nerve in my right leg didn't improve very much at all after this last surgery. It's working now (it never did before when I took it before my other surgeries or afterwards), so I'll continue taking it until it doesn't work anymore. My surgeon doesn't guarantee that this third surgery will be my last. He used to be more optimistic. He's a great surgeon, fixes what's wrong, but I keep "slipping and need to be fused. I get through my surgeries well, fuse well and that seems to be the only thing that helps.

You're early in your post-op, so please don't give up hope that this will be put right. It takes a LONG time to recover completely from fusion surgery and a long time, sometimes up to 18 months to fuse completely. Take it easy, try not to rush things ( I know, I know ... easier said than done. I'm not a good one to give advice about slowing down until I heal) and just be patient. Don't give up. If I had my surgeries to do all over again to get to this point in my life with my back, I'd do it all again. I'm not pain-free, I still see a PM (pain management) doctor, but I'm good, better than I was before my first surgery.

I hope this helps. Please feel free to ask about anything. I've been there/done that, back pain-wise.

P.S. - I don't believe in god, either ;-)

Like/Dislike
2
on 06/20/2011 1:08pm

HI
When I was originally diagnosed in 1994 there was nothing and no one to refer too. No internet for information and I was the 13th person in the uk to have the operation. Needless to say it has been a nightmare - talk about lost and lonely!
I wish i could say that it gets better - but it does not - I've tried everything done exactly what they told me to do and still I'm in constant pain.
My husband blames a shrink for tellimg me to get used to the idea that I'm nolonger the person I used to be, he said that I was a Human doing and now I'm a humanbeing as in being around and not taking part in most of life - just before this I had decided to take up scuba diving for weightless pain relief and had been given the ok by my doctors as My husband carried the kit until I was in the water so no heavy lifting (not that I could) anyway after this "Talk" with the shrink I've no idea what took over but for the next year I sank (Not in dive terms) I became so low I could not have cared it i lived or died I just did not care. I ended up putting on 3 and a half stone in weight and could not be bothered to go out or do anything.

Eventually I sat down and realised that I've been threw enough The spinal decompression and fusion both in and out again the injections, the drugs, the anti -depression drugs, the lack of sleep followed by days of sleep. I was not living for the joy of it but for the pain on it.
So
I joined a slimming class (Slimmers World) loss 3and a half stone in 20 weeks and said enough is enough I will do what I can when I can and enjoy my life - I now had this for 17 years and it has taken this long to wake up to the fact that live goes on no matter how much pain you are in.

No one else will understand how you feel unless they have been there. Only you can decide what you can do and how you view life. Just remember Doctors do not know everything and sometimes it takes talking to everyone in your situation to help with the problems you have. JUST WISH I HAD HAD HELP TO BEGIN WITH.
So what happens next? I'm 44 slimmer than last year - no change to pain - but I will continue to scuba dive and I have taken up kayaking (I'm not good at it but it is ok) - so who knows - the future is to be written.
Good luck and always ask questions it took 6 months for my recovery form the original operation and I had 5 good years inbetween the metal work in and the metal work out. Then it all went wrong but on the bright side during this time I got married and have to cats (No kids) and have 5 extra A levels which has filled my time too. Also I do a great deal of craft to distract my mind from the pain.
I hope this kind of helps - At least I got this off my chest!
Cheers
Linda

Like/Dislike
0
on 07/21/2011 9:05pm

Thank you all for your reponses, sorry it's taken me such a long time to reply to them. I did read them straight away. I'm 4 months post op now, pains slightly less, but the back pain is still awful and the leg pain's still flaring up every now and then, usually when I've been doing too much. I just wonder if it will always flare up when I've 'done too much'.
You all seem to have had your fair share of bad experiences but I guess none of us would have taken the risk if we didn't think it was worth the potential gain. I suppose I need to keep waiting but I'm still getting frustrated that suddenly everyone thinks I'm fixed and it's all that simple, when you and I both know that it isn't. It's hard work. It's a life long challenge. I'm trying to keep positive, I know it's best and ultimately it's my decision how I view it, I just need incentive right now, more than what I have 'cause my guts saying that the back pain's gonna be this bad forever. That's really getting me down.
Linda, did you have your metal taken out of your spine?!?! I know mine's staying there for good, it's all nicely drilled in place and there's no intention of it being taken out. Saying that, you had your surgery a while ago, so I'm sure the procedure has probably changed.

How has everyone found coping with their condition in regards to work? Do you all work or are you part time or what?

Like/Dislike
0
on 07/24/2011 1:15am

HI , I just wanted to tell you that you are not alone on what you commented on that people don't believe you have this bone out of place and it does cause pain.I'm 35 and have a grade 4 I have seen 3 docs that wanted surgery.I went to the 4th one and gave me a medial block injection and started pt for 3 months. I got stronger and am able to take care of my duties but there are times when the pain gets unbearable and yup I feel like no one believes me.Docs and people look at me and say "come on you look healthy and strong how can your back hurt,or you too young to have back pain.It's good to know i'm not alone on this. thanks.............

Like/Dislike
1
on 07/24/2011 10:12am

loveandjunk, there may be a time when your surgeon wants to remove your hardware if you have further surgery. I thought, after my first surgery, I'd have mine there for the rest of my life. During my third fusion, my surgeon took out my initial screws and rods. I didn't need them anymore. Remember, the instrumentation is put there as a kind of scaffold to support the bones as they fuse. Once you're fused (and you may not be until about eighteen months) you don't need the hardware anymore.

One consolation: It's early yet for you and you have plenty of time left to heal. Try to be patient and don't give up yet. A year from now you might be considerably better.

As for working, I'm a freelance writer, so I work from home. That's ideal for me, since I can get up in the middle of the night if I want to or if I'm restless and can't sleep. I can work whenever I feel good. I can take it easy if I'm not feeling up to doing anything. Even after my third surgery (in February), it's taking a long time to snap back to what's "normal" for me. And yes, I still have pain.

Like/Dislike
0
on 03/14/2013 10:40am

loveandjunk.........I just read your post and hope that you are feeling some relief at this point. I had a L5-S1 fusion done 4/24/12 after 8 years of extreme pain following an accident 5/26/04. I have had nerve pain on the right side, my hip and leg to the knee the worst. On the left I have intermittent pain, but have been completely numb on the outside of my left leg from the knee down. I fought for my fusion for 31/2 years. I have an abnormally high tolerance to pain and had been hitting a 12 on a scale of 1-10, even my mother told doctors that she had NEVER seen me in that much pain, not even during natural childbirth. Anyway..........the fusion was a success in the aspect that my spine feels better than it has in over 8 years, BUT the nerve pain is still extreme and I am still numb on the left. I am up to 600mg of Gabapentin 5 times a day with no relief and almost 10 months post-op. They told me I should have relief and feeling back in 6-12 months, if not then it is likely permanent, it is not looking very good.

I am in physical therapy still and am we are working on core strengthening exercises, stretching, and light weights. Due to being stagnant for so long my poor body has gone to mush, I would love to be fit again!! I also do relaxation exercises, but while they help with muscle tightness, they do little for the nerve pain. From everything I have read and been told, the nerve pain is something there is no real treatment for.

My physical therapy slowed down for a little bit, but is picking back up full force, so I am adding a couple months to my projected date of relief. Christmas Eve I fell down an oak staircase (yep it was a wonderful Christmas.......NOT) when I woke up n the trauma unit the first thing out of my mouth was "my back......tell me my back is ok". Thank god my back was the one thing I didnt mess up! I just have more issues, the worst of it is my neck and left wrist. I have a neck injury that still causes dizziness so I am not allowed to drive for a while, they had to wait for me to be out of the neck brace and some of the dizziness to subside before they could operate on my wrist. 1/7 I had a plate and 9 screws put in my wrist.

One day I am going to have everything healed and little to no pain. I hold out hope. I hope you are doing better as well. Keep your chin up and stay positive. I have learned that my attitude oddly affects my pain. If I am stressed it immediately settles in my low back. I have learned not to stress over anything I cannot do something about today.

Cancel
Delete