?'s re:lumbar scoliosis

[gabrielle]

Hi! I've been looking in at the forums from time to time over the past couple months and I have some questions. I see that most people here seem to have double curves or thoracic curves. I have a 78 degree lumbar curve (last check was almost 2 years ago, it may be more now). I am going to see a surgeon next month- finally getting to a "point" in life where I can do something about it. (I was 23 when I was 1st diagnosed- curve was 62 degrees). I have searched the 'net for info re:adult idiopathic lumbar scoliosis and it seems to be more difficult to correct w/instrumentation. Is there anyone here that has lumbar scoliosis? Did you have surgery? If so, how was it (what did they do? what kind of instrumentation? anterior and/or posterior?) and how are you now? (do you have any advice, etc.?). What was your curve pre-/post-op? I'd like to get some firsthand feedback before I go to the Dr.- he may be able to "fix" it, but he doesn't live with it! Thanks!!

[Skooter]

Gabrielle-

I had double major curves. I was diagnosed at 16 and it got progressively worse over time. I finally couldnt take the side effects of the scoliosis- burning pain in my left hip, numb legs, breathing problems.you name it i had it..I just couldnt take it one day and saw my specialist and he set it up from there. 6 months later I was having my 1st surgery. I have 3 titanium rods with pedicle screws throughout my entire spine. I had both anterior and posterior fusion. Anterior definitely was painful but I got much better results from that surgery than the 2 posterior surgeries that followed. THe worst part about recovery from the anterior is that you have a stomach incision which is very painful and tough to move with. but once you get past the first 2 weeks its smooth sailing. I hoped that helped . Let me know if you have any other questions.

Ali

[Danite]

I will try and keep it short, I have a marked dextro conver scolisosi of the thoracolumbar spine. Spinal Stenosis, multiple levels within the lumbar spine to varying degrees, degenerative arthritic changes of the articulating facets, L3-L4,L5-S1 levels. This was and is after a spinal fusion in 1954, since that time I have had numerous checkups and followups, medications, therapy and MRI's. Until recently I have been able to work full time, and have just recently applied for SSDI.
I'am not a supportor of surgery or spinal fusion unless it is absolute. I'am not a supporter of further surgery, such as revision. The statistic that I have read do not support necessary successes for me, personally. It is something you must decide, all I can tell you is that I have had a pretty normal life but only because I have ADVOCATED for my rights as an individual with a disability.

[gabrielle]

First, thank you both for your repiles. I'm still looking for more/good info specifically regarding lumbar (only) scoliosis. My curve is low- looking at my x-ray the curve starts at the sacrum. (my spine is a "C" shape). I can tell there's been significant rotation over the past few years as well. I can feel the bottom of my left rib cage rubbing against my pelvic bone when sitting in certain positions, or standing/walking for any extended period of time (more than an hour). I'm hoping to find someone who has had lower lumbar surgery- fusion w/instrumentation, or fusion w/lumbar cage... whatever, I guess. Mostly my life has been normal. I gave birth 3 times (all vaginally, and all 3 kids have great spines) and worked f/t until 2 yrs ago. With the pain, progression and age factor (I'm 42) I think surgery is the only answer. (and honestly, I am tired of being crooked!)
-gabrielle

[Danite]

All but two lower verts are fused in my spine, and I know that the pain and discomfort can be an issue. So my lumbar area is just one big fusion and an ugly one at that. I wish you the very best and keep looking for your answer, I know that originally my fusion did work for almost fifty years so if you decide on one. I sincerely hope that yours will last for at least fifty also. Medical and research has made significant progress in this area, but do consider the risks. God Bless.

[Felicia]

Check into STRS.com (Scoliosis Treatment Recovery System)
I hope this helps.

[Heathmoose]

Hi Gabrielle. I do not know if you still check this forum, but I came across your post and I too had scoliosis, primarily in my lumbar spine. Before my surgery, my lumbar curve was 70 degrees. I did have a thoracic curve of about 42 degrees, but my primary curve was in my lumbar spine.

I was fused from T-11 to L5. My surgeon did not correct my thoracic curve during surgery. As it turned out, my thoracic curve spontaneously corrected itself after the surgery. My surgeon explained that straightening out the dominant curve can result in a simultaneous correction of the secondary curve. I had both anterior and posterior fusion, so I have two scars, one in the front going up towards my rib cage and the other just on my lower back.

Did you ever have surgery to correct your lumbar scoliosis. I'm just curious since you wrote about your situtation and possible plans...

[Karen Ocker]

the STRS is a scam. It preys on false hope.
Karen

[smallfry123]

Hi! I've been looking in at the forums from time to time over the past couple months and I have some questions. I see that most people here seem to have double curves or thoracic curves. I have a 78 degree lumbar curve (last check was almost 2 years ago, it may be more now). I am going to see a surgeon next month- finally getting to a "point" in life where I can do something about it. (I was 23 when I was 1st diagnosed- curve was 62 degrees). I have searched the 'net for info re:adult idiopathic lumbar scoliosis and it seems to be more difficult to correct w/instrumentation. Is there anyone here that has lumbar scoliosis? Did you have surgery? If so, how was it (what did they do? what kind of instrumentation? anterior and/or posterior?) and how are you now? (do you have any advice, etc.?). What was your curve pre-/post-op? I'd like to get some firsthand feedback before I go to the Dr.- he may be able to "fix" it, but he doesn't live with it! Thanks!!
I have lumbar scoliosis and i have had two rods put in my back. one on each side of my spine to support it better. It saved my life. I was in heart and lung failure because the scoliosis was cutting off the ability to expand my lungs enough to breath on my own. I noticed an immediate change after surgery. I felt tons better!- Good luck I still have severe scolioisis but i am no longer in the position i was once in. -
Jenny-

[Pips]

I too am 42 years old and I am currently recovering from surgery for lumbar scoliosis. I do have double curves, but my thoracic curve has not been corrected. Most people bend back the other way to some extent, creating a second curve just so they can stay upright. Because my lumbar curve was bigger (and increasing), I was very unbalanced with a big sideways shift (head over right hip). My thoracic curve may also have to be corrected in time but so far they have left it alone.

You may find my blog of interest since we are the same age and my lumbar curve which was 70 degrees in 2003 had increased by about 10 degrees in the last 2 years. I also had a pretty big rotation. I am now very balanced side to side and remarkably straight for what they have done so far.

Hope this is of some help.

[kardoid]

hello i've been looking into these forums for quite a while i have lumbar scoliosis with some associated kyphosis in which my lower spine has a bump to it sticking out of the right side. my lumbar part of the spine has a C shape to it and my ribs at times feel to be rubbing with my pelvis. I dont know if the hump is rare since no one on these forums really talk or even mention it. The curve is very low in my spine, it basically starts where the pelvis starts so im afraid of the fusion since i know i'll be fused from the pelvis on up, hopefully only to where my ribs start. Does anyone have this type of fusion that starts that low, is the mobility extreamly limited? can you still bend? also i was wondering is it easy to eat at a dinner table since its prob. hard to bend over close to the plate

some help would be appreciated thank you

[Pips]

Rib humps are very common, as the ribs get pushed out of the way by the spine.

My fusion starts at my bottom vertebrae although there are lots of people on the forum who have been fused to the sacrum. I can still pick stuff off the floor and can bend pretty well considering the amount of metal they put inside you! Dinner is not a problem at all.

My ribs had actually passed inside my pelvis before they operated and it was a huge relief that they were able to put that right.

Hope this is a help.

[kardoid]

Wow thanx for the info, yeah i also have the rib hump on the side, but it seems like my spine sticks out of my back too like the curve, curves out side of my body i can feel my spine and the curve b/c it sticks out quite a bit i know if i get fused i will get fused from the pelvis on up since it starts too low. Also how much was ur back straghtened? was it a complete thing or is there still a slight curve? and did u gain any height too?.. One of the things i hate is that all my shirts fit horrible they all feel too long and very unconftrable b/c of the shirt feeling like its tighter from one side.

Also how is the recovery going is it what u expected refering on the way its making you feel? and if so do u think you would of gotten it sooner? Hope the recovery is going and keeps on going great..

thanx

ivan

[Sherie]

Hi Ivan
Have you had a surgical consult yet and did they tell you they would fuse from the pelvis? My daughter has a 60 degree lumbar curve that ends at L5.
Her doctor took her xrays with him to a spine conference where he discussed her case with 30 other physicians, none of them said they would fuse to the sacrum. All of them said the lowest they would go is to L4. The top level they would fuse varied. She's 14 so I don't know how that would make a difference but nowdays, dr's will try to preserve the lower vertebrae if possible. If you've only had one opinion, definitely seek out a few more.
As you know, the less they fuse the more flexibilty you will retain, the downside is if they don't fuse enough, there's a possibility for revision surgery later on.

[kardoid]

hey Sherie, thanks for that info. im bearly going to go get a consultation on the surgery they havent told me anything yet but by looking at my xrays thats what i think :p i guess im just playing dr. here. But i also think that my curve ends at L5, hopefully i get that info and the fusion wont be complete. Also all the luck to your daughter hope all goes well and just like all the other scoliosis suferrers hopefully something comes up soon that will make us straight with out surgery.


thanx once again

[Pips]

They stopped my fusion at L5 too - my surgeon prefers not to fuse to the sacrum but says that it will still be possible to do it at a later date if needed.

My curves have been reduced by about half (so i still have two 30+ curves). I gained 2 inches in height. My surgeon always tries to get the best correction from the fewest number of fused levels - I did have some complications though so maybe could have been straightened a bit more.

They say full recovery takes 6-12 months and that is about right, although I was able to get out and drive and do loads of 'normal' stuff after about 4 months . Lots of people do better than me, as I have spina bifida so have some other problems.

I would have it done again in a heartbeat, although I would have opted to get it done younger had I had the chance!

[Sherie]

Ivan,
I was hoping for some miracle too for my daughter where she wouldn't require fusion and have tried several types of therapies and braces which none of them worked for her. We asked the fellow (a dr. training to be a specialist) at the dr's office yesterday if there was anything new coming along that was worth waiting for and he honestly told us no, there's not a ton of research going on and there's nothing new in the pipeline. I think there will be advancements and improvements in surgical techniques but as far as a fusionless surgery for advance scoliosis, that may be many years from now. I wasn't considering surgery at all a few months ago, but now see it as the best hope we have of preventing problems in the future. The odds are in her favor now because of her age that she will have an easier and more successful outcome but everyone has to look at their own circumstances to make that decision. I hope everything works out for you.

Pips, I saw your before and after photos, you are really standing up nice and straight, I'm very happy for you. It's reassuring to me when I hear older patients say they wished they had done this when they were younger because this is the most difficult desicion I've ever had to make.

Have a Happy Valentines Day everyone! :p

[Pips]

Sherie

There are lots of people who have surgery in their teens very successfully. You have to weigh up the surgery against any future progression. At your daughter's age they could do nothing for me becasue of my spina bifida and possible complications, but I wouldn't wish my last 10 years of progression on anyone and genuinely wish that I had had chance to do it when i was younger.

I do hope that you come to a decision that you are happy with and whatever you decide, that it all goes well for you and your family.

Best wishes.
Pip

[Sherie]

Thank you for the kind word Pips. We are looking at surgery this summer because of the steady progression of her lumbar curve, with the thoracic following right behind (the evil twins). By the way, I read some of your blog a while back so I feel like I kind of already know you, you have a nice engaging style.

[kardoid]

These forums do help so much, its good to know that one is not alone in this world, One of the things that i wonder i heard that when u have metal in ur body or something like that and it gets cold outside ur rods get cold too and makes ur back hurt for that reason, is that true?

[Sherie]

Hey Ivan
I've just seen several posts this week about that very thing. Apparently some people do feel the cold in their back, we live in Houston so it shouldn't be a big problem here. Anyway, you should post in the adult section, I think you'll get a lot more responses there. Take care.

[cooper43]

Hi there!!
I have a single lumbar curve. I had surgery back in 1978 at age 14. My curve was 66 degrees and had increased by 10 degrees in 6 months at that time. My curve was originally straightened to 27 degrees. Unfortunately, the bone graph popped at the hook assembly. I was off to surgery 1 month after the first. I grew 2" during surgery. I've now lost an inch. I have a single Harrington rod which broke about 2 years after insertion. My dr suggested that we only do something if the curve started to move. It didn't for a long time and I never had follow up appointments with regard to my spine. I just recently learned that the reason it broke was because the fusions did not take. I do have fusion up higher on the curve, but the L4, L5, and S1 vertebrae did not. Now I have accelerated degenerative joint disease and osteoarthritis in those three joints. I'm looking at the possibility of another surgery to remove the lower portion of the broken rod and insert two rods and screws. The tough decision I face is when is it best to go ahead or if I go ahead with surgery. How much pain is too much to live with before I decide it's time to go ahead. Everyone is different. I know I can live with the pain as it is for a while, but do I want to?
The amazing thing is that I was able to go 28 years before having to address this again and able to do many things that I probably wasn't supposed to; soccer for one. I don't do that anymore, but I'm not so sure it has anything to do with my back. I also had two children naturally and unfortunately gained more weight than I should have in the process.

I never got the sensation that my bar got cold so I did. The only thing I ever noticed is when I got really cold and I shivered through my torso that I seemed to be able to "feel" it.

Connie

[kardoid]

wow well dont know what to say Connie, I've been debating surgery, the pain is there its not to the point to were its killing me but it does hurt and i hate it.. I guess for me the major part of the reason i want to get surgery is b/c of my appearence, they say u cant see it or notice it,(with clothes on) but i do, and i hate it, hate going to the beach and not be able to take my shirt off stuff like that.. But u know If u are going threw some pain and u think u can handle the surgery why not get it now and not wait till one day that u may not be able to handle it so easily.


Ivan

so u felt the rod in ur back when u shivered that must have been a crazy feeling..

[cooper43]

Ivan,
I can relate to what you are saying about appearance. My curve was better after surgery, but I can still tell that there is a tilt to my clothing. Clothes just don't fit us the same as someone without scoli. It's not easy to do, but don't let it bother you so much. I always wore my bikinis; even after surgery with a big scar down my back. If it bothers someone, then they don't have to look. I hope you don't miss out on things because of this. It's not worth it.

So are you planning on surgery soon? Who do you see?

You know, I think it's more that when I am cold my muscles are tense. I seem to feel it then. I realized that more tonight as I had to go out in the cold here in upstate NY. We had a big Valentine's Day storm this week and got about 40" of snow. What a day that was!!

Thanks for responding Ivan. :-) Connie

[kardoid]

So is the scar pretty big? I thought that with time it blended in and it would end up like a hair line looking scar? so ur scoliosis is in ur lumbar section? Im not sure about the surgery i want to get it b/c i know that i may need it in the future and if i get it now while im young it'll be better than more far the line when i may not be strong enough to handle such a surgery.
are u able to bend down pretty good or are there lots of limitations?


Ivan

[kardoid]

[QUOTE=kardoid]hey Sherie, thanks for that info. im bearly going to go get a consultation on the surgery they havent told me anything yet but by looking at my xrays thats what i think :p i guess im just playing dr. here. But i also think that my curve ends at L5, hopefully i get that info and the fusion wont be complete. Also all the luck to your daughter hope all goes well and just like all the other scoliosis suferrers hopefully something comes up soon that will make us straight with out surgery.


thanx once again[/right lumbar curve T12- L3 43* T12-L5 69*]