Should I have surgery now...or wait?

[Tall Paul]

Hi,

I am a 57 yo male with adult degenerative scoliosis and have a flexible curve in my lumbar spine. When sitting or standing my curve is in the 40's and when lying down it in the 20's. So when sitting or standing the muscles in my back overwork and eventually go into spasm. Muscle relaxants, stretching or lying down provide me with relief. The pain has been increasing for the past 10 years and last year I went on disability. Not having to sit at a desk everyday has helped reduce the pain and if I plan my day carefully I can manage the pain. If I have to sit or stand too much, I will be in terrible pain on the days that follow. So while my quality of life is severely effected, if I manage the time I sit or stand, I can get by.

I spoke to a surgeon that I trust who wants to fuse me from T-12 to the sacrum. I think I'm most scared of loosing flexibility. So I guess my question is do I have surgery and learn to deal with loss of flexibility or continue to live a life on disability until I have no choice to have the surgery? Right now this feels like its an elective surgery. But at the same time I know I will never get better and surgery is inevitable.

Your opinions are appreciated.

[CHRIS WBS]

Hi Paul,

When I met you at the support group meeting a few years ago, you appeared to be in more pain than me, despite my very severe scoliosis. As I recall, you were standing most of the time and looked pretty uncomfortable. Why would you choose disability over something that can be surgically fixed? Dr. Gupta did a fabulous job of fixing my spine. And while I have lost some flexibility, the benefits of the surgery outweigh that loss. I’m still puzzled why some people will suffer for years and postpone surgery to the eleventh hour. Unless you have private insurance, don’t wait until you’re on Medicare. With this health care debacle, I wouldn’t safely assume that surgery will still be an option then.

[LindaRacine]

Hi...

I totally agree with Chris in terms of choosing diability over surgery. And, if you're disabled, what good has the flexibility been?

Hopefully, you'll here from people who are fused from T12-S1, but what I hear from most is that their flexibility changed very little with surgery. If you're already in enough pain to be categorized as disabled, you've probably lost all or most of your flexibility in the area anyway.

Good luck with your decision.

Regards,
Linda

[Vali]

Hi Tall Paul,
I'm fused T11-S1. I also had DDD at L4/5-L5/S1. I had my surgery last year.
I can move a lot better now. I could put my socks on, on day 2 post-op, cut my toenails - 8 weeks later and many other things, that i thought i may not be able to do. Sure, you can't bend at the waist, but thats what your hips are for. Tall Paul, to be honest, when my surgeon gave me the run down on my surgery, aftercare and how i might function afterwards, i had anxiety set in. I can tell you, that for me, flexability issues are not an issue. I consider myself being back to normal (before the painful scoliosis issues)! If you have more questions ask away.

[JenniferG]

The loss of flexibility affects only a tiny piece of my daily life - at a guess, I'd put it at 2%. Compare that to a life of disability and pain, there's no contest.

It's a very scary surgery, but it's doable Paul, and whilst everyone has a different outcome, you've only to read this forum to see that the vast majority are happy they had the surgery.

If you're in the position of facing it inevitably, then do it now, is my advice. Now is definitely better than later. Sincere best wishes with your decision.

[jrnyc]

Hi Paul
i too need fusion...T11-S1 & L4-sacrum...and hesitate for same reasons you do...my curves are bigger, i think...40 degree thoracic is treated with botox shots to freeze the muscles so they no longer spasm...61 degree lumbar, spinal stenosis, arthritis, degenerative disc disease, rotation, etc etc...that bottom curve is what they want to operate on...

see my nyc surgeon april 12th..want to discuss possibility of dr anand's less invasive method....saw anand in CA jan 27th ...i have hesitated while the pain increases...i had to retire 3 yrs ago due to pain...& i loved the 2 jobs i had in manhattan!

i have read many many folks on this forum say that they beg their doctors to STOP at L5 to keep their flexibility! and others who dont want to have additional surgery, years after their first, cause they dont want to have to extend their fusion to sacrum...so while many on this forum talk as if there should be no problem with the decision...i would strongly & respectfully suggest they read some of those posts!!!!

there IS an issue with flexibility! i dont think twice about bending now...i KNOW i would have to be careful if i have the fusion!

i know how hard the decision is...& i think it is a trade off...loss of flexibility traded for less pain...IF that is the result...the lack of promise of no pain makes one hesitate even more...though i know no doctor can promise no pain..it makes one wonder...& worry, i guess...

best of luck in making your decision...i think waiting runs into an age issue...& i am older that you!


jess

[loves to skate]

Hi Paul,

I guess I am the type of person that chooses to have a life of being able to do the things I love rather than to give up a job and go on disability and live a life of pain. If I had known about my scoliosis sooner, I would have had surgery sooner. You have so much going for you being 10 years younger than I was when I had surgery and having a flexible curve. At my age of 67, my curves were inflexible and I had osteopenia. With osteopenia, the chances of getting much correction drops drastically. I am able to do so much more since I had my surgery than before. I couldn't walk for more than 5 minutes (so no shopping) and couldn't stand for more that 5 or 10 minutes. The only physical activity I could do was water therapy. It didn't help the pain, but helped keep me in decent physical condition. Now I can walk up to two miles, I can roller skate for almost two hours at a time, I can prepare meals without difficulty and I can garden weather permitting. I have lost some flexibility but not that much and you learn to do some things a little differently, like bending at the hips and kneeling down to drag things out of a low cupboard or closet. T12 to the sacrum shouldn't lose much more flexibility than L2 to the sacrum. I personally don't understand why anyone would just want to get by when there is so much to gain with the surgery. Degenerative scoliosis doesn't get better with age.
Sally

[joyfull]

Ditto, Paul. Read my post to David. I'm also 57, similar issues, 85-90 degree curve (depending on which doctor does the measuring!). Good luck, Joy

[jrnyc]

Hey Paul
i dont know if this bothers you, besides the flexibility thing...but to me, the thought of going thru other, new pains, after the healing...i keep reading these posts on forum of all different pains in places that didnt have pain before the person had the fusion.....that scares me! also, needing "revision" later scares me....if i am fused to the sacrum or pelvis, does that mean the screws or rods would have to be removed later? how many more surgeries would that be? i am very very thin...and that makes me fear that i will be able to feel the tops of the rods or feel where the screws are....that is what surgeons have told me, anyway...
3 of the surgeons i consulted in manhattan felt there would be no additional problems for me, having osteopenia as i do...they also thought i had alot of flexibility now...no strength, but flexibility! anyway,
i am afraid of pain in new places, increased pain in old places, and flexibility problems...

also, if anyone who needs surgery & is asking their doctor to only go to L5...i'd love to hear from them..or those who need extension of old fusions to sacrum and are holding off on that...i'd love to hear from them as well...i have read so many such posts on forum...i wonder if they want to talk about it on this thread...cause LOTS of folks understand the whole "please dont go any lower" with fusion request! and plenty of surgeons have heard that request as well!

be well...good luck with whatever you decide
jess

[debbei]

there IS an issue with flexibility! i dont think twice about bending now...i KNOW i would have to be careful if i have the fusion!
jess

Jess & Paul,

granted, I'm not fused to the sacrum, but at not quite 1.5 years post-op, I don't think about bending now either. You might think that sounds crazy with T3-L3 fused, but I can. Last night I just bent over the top of the bed to reach something way on the other side. It occurred to me that, 'wow look at you bend.'

Granted, I do a lot of squatting as well, but sometimes I don't think and just bend naturally (or what seems like naturally to me.)

[rich1752]

Jess and Paul, I am one of them, who was advised by my doctor to go ahead and do the pelvis. My doctor and I spoke about numerous times and we agreed that he would go down to L5, unless their was no more disc between the L5 and S1. He ended up going only to L5, which left me very excited about flexibility. He did give me the warnings about future operations, but I'm wishing for new technology to help me out when that time comes. Today, I am 3 months post of and feel great, I'm off pain meds and walking about 5 miles a day. I was a Deputy Sheriff before, I had surgery, so havn't been told officially that I can't return. I am not looking forward to that day!!

rich

[jrnyc]

hi...
Rich..thanks for being HONEST about it...dont blame you a bit!! if you can avoid going to sacrum or pelvis...well of course, anyone would!! and that is exactly why they ask their doctors not to!!

debbei...going to L3 i dont think would worry me...rather, i KNOW it wouldnt..so thanks for the info...but i know for a fact that my doctor would/will START the fusion where alot of people END their fusion...and that makes a HUGE difference!! they dont even want to touch my thoracic...just my lumbar... we would start at L4...& T11...sooooooo....it is a different story than ending at L3 or L5!! i know that yours was not an easy surgery....and am sure you have had to make adjustments...but i am glad for you that it doesnt go to your pelvis!

i am happy for those who do not need longer fusions...or lower fusions...for now...but dont relate to the stories of upper fusions...sorry..that is just how i feel. i wish everyonewho has surgery well...it might be me in a while...

jess

[ADMoul]

I totally agree with Sally. I chose to move ahead with this surgery (fused to sacrum) so that I could have my life back. When my local physician even hinted at retiring on disability, that clinched it. I am a very healthy 52 year old and am already able to stand, walk and move around without the constant pain and nerve impingement sensations that I had been living with for the last few years. Sure, I have post-op pain and I will for a while but it's the long-term relief that's important. Even now, I can reach just about anything with my "grabbers" and I can even leash my small terriers if I'm sitting down and they hold still! Everyone is different and you've got to go with what's right for you but to me, the flexibilty limitations were a small price to pay to have the pain relief and knowledge that the curves were not going to progress any further.

[jrnyc]

happy for you, Anne...hope you feel better, stronger & more pain free as the days progress!

jess

[Singer]

Regarding the L5 vs. sacrum debate: there have been a few discussions of this before. I had 2 opinions before surgery and one doctor wanted to go to the sacrum; Dr. Boachie said he wanted to stop at L5 if it was in good shape (it was). Boachie also said that there was a 50-50 chance that I might need additional posterior surgery to extend the fusion sometime in the future.

In the end, I decided to stop trying to play doctor and let my surgeon make the decision about which levels to fuse. I agree that perhaps by the time I need additional surgery (if I need it), there may be new and improved technologies.

When it comes to making the decision about whether or not to have surgery, it starts to gain momentum in your mind when you realize it's pretty much a guarantee that things are NOT going to get better -- and will probably get much, much worse -- without it.