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View Full Version : All S-1's out there?



rich1752
11-28-2009, 08:52 PM
My surgeon had first told me that I needed to be fused to L5, but now is recommending that I go down to S-1. I am worried about my mobility or lack of. For those of you who have a S-1 fusion, please let me know how it feels. Can you bend at all? I'm in pain now, but I am scared of losing all flexibility. I worked out with weights a lot before the pain become unbearable, but hope to return. Can I return with an s-1 fusion? please let me know.. thanks

rich

JenniferG
11-28-2009, 11:25 PM
Rich, I found the fear of losing mobility was far worse than the reality. No, you can't bend at the waist, but you can bend at the hips and knees. No, you can't twist round in the driver's seat, but you can sit on a satin pillow case, which allows you to move slightly to see over your shoulder. Most things are doable, even if slightly differently. Don't let the fear of losing your mobility stop you from having a low fusion. Once fused, you won't have to worry about the heavier strain on lower, unfused vertebrae. The loss of flexibility is outweighed by the end of worrying about your curve progression and what the future holds.

Better to ask whether those who've been fused low, are glad they did it? I most certainly am!

Good luck!

Vali
11-29-2009, 01:27 AM
I ditto what Jen has said. As my surgeon said "pain or no back pain, you should always bend at the hips anyway". In two days, I will be six months post-op and everything is do-able,however with somethings you ahve to maybe do it another way. Visualise: you probably could put your socks on by bending completely forward - after, you will probably need to put your foot on the opposite knee to do it! For me personally, I'm glad, the amount of pain i was in at those low levels, was just killing me and wearing me down. I am a much happier camper now.

dolores a
11-29-2009, 07:50 AM
Hi Rich, ditto, ditto to Jennifer and Vali. Being fused down to the pelvis does make you find different ways of doing the things you did before, but you adjust. As far as the weights go, you will probably have to adjust the way you were doing it also, but as Jennifer mentioned, the proper way to lift anything is from your legs! You won't be able to lift anything for a while after your surgery though. Good luck with your decisions.

sillycoffeegirl
11-29-2009, 12:33 PM
If you dont mind me asking Rich, but what are your degrees of curves? Im 75* L and 54*Th. My doc said i will have most of the way down but hes going to leave the bottom two unfused for mobility cuz im young. But he said when im 40 or so I will have arthiritis there because of the stress of everything going to the two bottom vertebre. So i would have to get fused all the way down then. :eek:

jrnyc
11-29-2009, 01:29 PM
Hi Bethany
i just wanted to ask........did doctor explain exactly where he thinks you will have mobility? do you know where the fusion will stop? i wonder why your doctor predicts you will have arthritis beyond your fusion..would it be better to prevent that from happening? have you had a 2nd or 3rd opinion to discuss how far your fusion should extend? i just think several consults are important for all patients...

i have a smaller curve...61 lumbar, 40 thoracic (thoracic would not be included in surgery)... they are telling me to have fusion to S1...maybe it is because i also have degenerative disc & spinal stenosis & severe arthritis in spine...do you have any of that? you said that you are young, so you probably do not... i have had 3 opinions, & all doctors agree on how far my fusion should extend...

i wish you all the best with your upcoming surgery...

jess

loves to skate
11-29-2009, 02:46 PM
Hi Rich, ditto, ditto to Jennifer and Vali. Being fused down to the pelvis does make you find different ways of doing the things you did before, but you adjust. As far as the weights go, you will probably have to adjust the way you were doing it also, but as Jennifer mentioned, the proper way to lift anything is from your legs! You won't be able to lift anything for a while after your surgery though. Good luck with your decisions.

Another ditto from me. I was in way too much pain in my low back and pain down my leg. I don't regret having the surgery, I just wish I could have had it before things got so bad in my spine with arthritis, spondylithesis, etc, etc. It is much harder to fix us older folks, but thank God it is doable. You will learn how to bend and lift properly from the Physical Therapists. Sally

Doodles
11-29-2009, 08:32 PM
Add another ditto from me. It was the thing I was so worried about and I'm finding I can live with this very well at 8 months and sure it will continue to improve. I am sure I'd have had to go back in again if I hadn't done the fusion to S1 now. It just makes sense. I'm glad that both doctors' opinions concurred on this so I could quit stressing on it. Janet

lapieper
11-29-2009, 09:27 PM
Despite the fact I'm having some minor difficulties, I do NOt regret having the surgery. Any limitations I have as a result of being fused T2 through S2 far outweigh the risks I would have faced if I had not had the surgery. (breaking a facet at any time, endangering my spinal cord, etc.) I very rarely notice I move differently, except when dancing. And since I dance mainly in my head (I just don't have the right moves -- never did), it doesn't bother me too much. I can tie my own shoes, do all personal hygiene, and now have very strong quads, as a result of deep knee bends! I have gotten better at my aim, when stooping or squatting to pick something up. Any limitations in my mobilbity have now been adapted to. It does take a long time, but it's very doable. My biggest challenge is when I'm in the passenger seat, and put my purse on the floor. It is a little challenging to pick it up off the floor. Remember, you only have to do this one day at a time. So, relax, breathe, and enjoy the ride!

crystalalice88
12-08-2009, 10:01 AM
I am fused to my pelvis as well. I had my surgery on May 26th and 27th, 2009. I can bend, but the only difference is that my back is completly straight, you have no arch in your back any longer. I have considerable pain when trying to bend over. I either squat most of the time now or I use my grabber to pick items off of the floor. One thing I noticed- I can't reach my bag under the seat in front of me on an air plane and have a very hard time shaving my legs in the shower. I had the exact same fears you did. i didn't want it to change my lifestyle dramatically. The reality, is that you just learn to do things differently. For instance, putting on socks takes me about 10 minutes (that's down from almost 20). I hope this information helps. I will post more if I can think of anything else.

CHRIS WBS
12-08-2009, 10:26 AM
This should all improve with time. Itís amazing what I am able to do now that I could not do a year ago. I find myself using my grabbers less often. I can shave my legs now with no difficulty. I no longer require a sock aid and I can even get on opaque tights. I just recently found a way to cut my own toenails instead of relying on monthly pedicures. Why I even managed to put up my 7í Christmas tree last weekend.

Jimbo
12-09-2009, 01:03 AM
Just wondering what the difference in mobility/flexibility of a fusion to the sacrum as opposed to a fusion to L4, which I am getting. Do those extra two unfused disks make a big difference?

shortlilnikki
12-09-2009, 01:47 AM
I will just say this. I am fused to S1. If I try to wiggle my hips left to right, my whole upper half goes with.

Jimbo
12-09-2009, 04:15 AM
I will just say this. I am fused to S1. If I try to wiggle my hips left to right, my whole upper half goes with.

How is everything going with you post-op. Looking at your facebook pics it is a dramatic change! Your back looks great.

JoAnn5
12-09-2009, 06:29 PM
I agree with the others... being fused to S-1 isn't so bad as you might think. I can still bend over to pick up toys off the floor and make most of the same moves i did before.... I just had to give up Chubby Checker and the Twist!!;)

titaniumed
12-09-2009, 08:01 PM
Being fused all the way down is not that bad, however playing twister is almost impossible.

Back in college, that was THE game. That guy that invented that game was a genius.

It incorporated rotational therapy, and some very therapeutic stretches.

Add a little alcohol, and you have a great scoliotic exercise program.

Great for medical students or any student for close up study of the anatomy.

Ed

Jimbo
12-10-2009, 05:37 AM
Could I play twister after being fused to L4?

I think I have that game under the house somewhere, probably funnel web spider's home now :)

titaniumed
12-10-2009, 10:22 AM
Jimbo

Depends on if you play advanced twister.

Ed

PNUTTRO
12-11-2009, 08:28 PM
Rich.

I had my fusion extended from L3 to S1 in 2008. At L3, I didn't have a much of a flexibility issue. At S1, I have to say, that it's a lot different.

For example, when I drop my pen at my desk, I can't just reach down and pick it up without banging my forehead on my desk. I have to get out of the chair and squat to the floor.

p

sheri66
12-18-2009, 06:53 PM
I found a way to shave my legs, takes me longer than it once did, but gets the job done.Took one of my long handle rubber scraper that you use to scrape the bowl when making a cake, took off the top and used duck tape to tape the razor on the handle works good.Still trying to put regular socks on any ideas?

Vali
12-18-2009, 07:15 PM
Have you tried putting your foot on the opposite knee? I could do this one on day two post-op. I think the fact that I had to start hip flexion exercises the morning after surgery may have helped.
My friend uses two silicone tongs as her extended thumb and index finger to put hers on, but just watching her drives me nuts.

sheri66
12-18-2009, 09:47 PM
Vali,
I have not started therapy yet.I did not know about hip flexion exercises.Before surgery I could get both feet to my face now I can only get foot to knee and only put thick furry socks on.My left is easier than right.How long did you have to wear your brace after surgery?

Vali
12-19-2009, 07:56 AM
Hi Sheri,
my therapy started the morning after surgery. They showed me how to log roll, how to exercise my lungs (deep breathing and strong coughs), hip flexion exercises and ankle flexing for circulation. I never wore a brace. My surgeon doesn't brace his patients after surgery, and the only therapy he recommends is walking, and lots of it.

sheri66
12-19-2009, 11:13 AM
Thanks Vali-On my 1 month check-up my doctor did give me a prescription for therapy.We changed Ins and I just started driving about a month ago so I need to start therapy after the holidays.I think the reason I'm doing so good is all the walking, started 2 weeks post op. about 2 or 3 miles a day.I am always on the go, hard to sit still.Hope I'm not overdoing.

yacpatty
02-11-2013, 09:48 PM
I know this is an old thread, but I am not having any peace since my surgery December 11, 2013. At age 13, I had a bone fusion T4-L2. After having chronic pain for 25 years, I finally had surgery. I went to the best BUT I feel like I have made a huge mistake. All my MRI's over the past 20 years have showed severe neural foraminal stenosis L3-S1. I have read hours upon hours of research that the route to take is fusion to the sacrum in this case. My doctor, being conservative, fused only L4-L5. Yes, I feel stronger in my low back and can stand and walk a little further than before, BUT after a short while here comes the unrelenting groin and heavy legs and nerve pain in legs. I still say it is because the S1 level is not fused. Reports show severe neural foraminal stenosis in that level yet the doctor decided not to go to the sacrum.....gave no good reason other than surgery would have higher risk and he felt there was nothing wrong with that level......Contrary to 20 years of MRI's and xrays showing severe stenosis.

QUESTION: Has anyone had to go back in and be fused one more level to S1 after being only fused to L5? Does the doctor have to take out hardware L4 and L5 and then connect fusion to S1? I am so bummed.....I am 61 and feel more surgery is in the future when it could have already been taken care of. Anybody have a similar situation? I am kicking myself that I wasn't more aggressive or gone with a doctor who would have fused to sacrum. This was my request but I didn't push it.

Thanks for your input....even if it is to encourage/sympathize with me....ha!!!! Just have no peace about it and this has been a very costly and time consuming adventure.

Irina
02-11-2013, 11:31 PM
I know this is an old thread, but I am not having any peace since my surgery December 11, 2013. At age 13, I had a bone fusion T4-L2. After having chronic pain for 25 years, I finally had surgery. I went to the best BUT I feel like I have made a huge mistake. All my MRI's over the past 20 years have showed severe neural foraminal stenosis L3-S1. I have read hours upon hours of research that the route to take is fusion to the sacrum in this case. My doctor, being conservative, fused only L4-L5. Yes, I feel stronger in my low back and can stand and walk a little further than before, BUT after a short while here comes the unrelenting groin and heavy legs and nerve pain in legs. I still say it is because the S1 level is not fused. Reports show severe neural foraminal stenosis in that level yet the doctor decided not to go to the sacrum.....gave no good reason other than surgery would have higher risk and he felt there was nothing wrong with that level......Contrary to 20 years of MRI's and xrays showing severe stenosis.

QUESTION: Has anyone had to go back in and be fused one more level to S1 after being only fused to L5? Does the doctor have to take out hardware L4 and L5 and then connect fusion to S1? I am so bummed.....I am 61 and feel more surgery is in the future when it could have already been taken care of. Anybody have a similar situation? I am kicking myself that I wasn't more aggressive or gone with a doctor who would have fused to sacrum. This was my request but I didn't push it.

Thanks for your input....even if it is to encourage/sympathize with me....ha!!!! Just have no peace about it and this has been a very costly and time consuming adventure.

Hi yacpatty,

I don't know what to say other than to sympathize and say that I feel for you...

Wish2bstraight
02-12-2013, 09:54 AM
Yacpatty,

I definitely sympathize with you and wish you well. While I was in rehab, my roommate told me that I was a good advocate. News to me, but I started paying more attention to my body and my gut feelings. I did put up a fuss with one of the nurses and my roommate and myself did complain to the head of nursing about the way one of the aides treated me when I first got to rehab. Things did change and I'm glad I put up a stink.Long story short, go with your gut and advocate for yourself. I know this doesn't help your situation at this moment, but going forward, please put up a advocate, nobody else is going to do it for you.

Libby

Confusedmom
02-12-2013, 04:56 PM
Patty--

Look up threads by JSully (Janet). She had surgery a few years ago and then went back and had fusion to the sacrum maybe 5-7 months later. I think she was happy with her revision.

Dr. Lenke said he could fuse me to L5 because the disc was fine. But h recommended going to S1 because he expected if I went to L5 I would need more surgery within 2-5 years.

That would be a major bummer to need more surgery so soon, but it does sound like the short revisions can be a little easier to recover from than the initial long fusions. Having said all that, you are only 2 months out. Do you think you might still just be recovering?

Best wishes,
Evelyn

yacpatty
02-12-2013, 06:42 PM
Thanks girls for all your support and encouragement....what blows my mind is that this is a top notch surgeon, all the research shows fusion to the sacrum especially when it shows severe neural foraminal stenosis and I told hm I had severe groin pain and nerve pain in legs....on my 2 mo check-up last weekend I told him I had severe groin pain off and on and nerve pain in legs...he said they did a big decompression in L4-5......why is he being so stubborn and not saying it could be coming from S1. If I need a fusion down to S1, does anyone know if the hardware needs taken from L4-L5 and then start over at L4. I have been fused from T4-L2 since 1963 when I was 13. After 48 years, the levels below that fusion have beome very deteriorated and has severe stenosis. As frustrated as I am with my doctor, I still feel he is an excellent surgeon and would probably let him operate on me again. And to add to this frustration, on my first surgical consLkt with him in August, his surgical plan was L3-S1....go figure...Why did he change his mind? His reasons were very flimsy.....still feeling 50% guilty. Thanks Jess, Irna, ConfusedMOM and jrnyc (janet)

yacpatty
02-12-2013, 06:44 PM
Evelyn.....I read all of Jsully's threads. Do you know how she is doing? I wish I could talk to her.
Patty

Confusedmom
02-12-2013, 09:39 PM
I don't know. The last posts I saw from her were on the revision forum. You could try to PM her. I assume she got better and didn't need the forum anymore.

Best,
Evelyn

rockycarm
02-13-2013, 06:30 PM
Thanks girls for all your support and encouragement....what blows my mind is that this is a top notch surgeon, all the research shows fusion to the sacrum especially when it shows severe neural foraminal stenosis and I told hm I had severe groin pain and nerve pain in legs....on my 2 mo check-up last weekend I told him I had severe groin pain off and on and nerve pain in legs...he said they did a big decompression in L4-5......why is he being so stubborn and not saying it could be coming from S1. If I need a fusion down to S1, does anyone know if the hardware needs taken from L4-L5 and then start over at L4. I have been fused from T4-L2 since 1963 when I was 13. After 48 years, the levels below that fusion have beome very deteriorated and has severe stenosis. As frustrated as I am with my doctor, I still feel he is an excellent surgeon and would probably let him operate on me again. And to add to this frustration, on my first surgical consLkt with him in August, his surgical plan was L3-S1....go figure...Why did he change his mind? His reasons were very flimsy.....still feeling 50% guilty. Thanks Jess, Irna, ConfusedMOM and jrnyc (janet)

Hi, I am 9 months post op T9-S1 and after surgery had terrible leg pain that has since subsided but now have residual right toe numbness that goes up my foot a bit. After a neurological consultation they did say that these things DID come from L4-L5 so I feel confident in saying that it's not S1. Having confidence in your surgeon is very important so best of luck to you and I hope you are feeling better soon.

rockycarm
02-13-2013, 06:35 PM
As I continue to successfully recover I do have a weird feeling in my lower back that I hope will subside. Although there is only one screw in S1 it feels like there is a plate going across my lower back. I still have sensitivity in that area. Has anyone else felt these things and will they go away?

sheri66
02-13-2013, 07:21 PM
I am almost 4 years post-op and fused T10-S1.I have a separate incision on my left side where I can feel the screw that is so close to the skin surface.I swear mine feels like it moves around.But I Still have numbness and weird feelings in my legs and feet.I felt the hardware for well over a year.Now I dont notice that feeling.I think it just takes time getting used to it.

rockycarm
02-16-2013, 10:52 AM
I am almost 4 years post-op and fused T10-S1.I have a separate incision on my left side where I can feel the screw that is so close to the skin surface.I swear mine feels like it moves around.But I Still have numbness and weird feelings in my legs and feet.I felt the hardware for well over a year.Now I dont notice that feeling.I think it just takes time getting used to it.

Thank you!