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Confusedmom
12-26-2010, 12:41 PM
Hi all,

What is scoliosis-related leg pain like? I've never had it in the past, but my leg has been hurting for a few weeks now with no obvious cause. Is this what all the doctors have been saying would happen eventually?

It doesn't hurt when I'm sitting or laying down, but it does when I'm walking or standing. Seems to move around--anywhere in my quad or knee area. Feels a little like a muscle strain, but I didn't do anything to it, and it doesn't seem to be getting better. I was expecting more of a shooting, nerve-type pain from scoliosis, but is this it? Any thoughts would be appreciated.

Evelyn

loves to skate
12-26-2010, 02:01 PM
Hi Confusedmom,
Leg pain can be anything and everything you mentioned from a dull ache to a shooting pain so bad that you can't stand up. It can be anywhere on the leg from the toes to the buttocks. Google Dermatomes and you can probably figure out what level in your spine is causing the pain or at least come close. I hope this helps.
Sally

debbei
12-26-2010, 03:04 PM
it's a hard to describe pain that doesn't respond to normal OTC pain medications. It was a constant pain that NEVER went away or stopped. To me, it felt like it was right under my skin (not type muscle pain.) Sometimes it also tingled or itched, but not all the time. Rubbing it always felt good, but didn't relieve any of the pain.

BTW, my nerve pain completely disappeared immediately after surgery.

naptown78
12-26-2010, 08:01 PM
Evelyn,
I had severe sciatica before my first surgery which progressively got worse as my lumbar curve progressed. It was a 10/10 at its worst. The location depends on where the nerve root is being compressed. Mine was at L5 which gave me pain in my lateral left leg (the side of my leg). It did not hurt sitting or lying but hurt like the dickens when walking or standing. To relieve it I would sit and bend my knee , bringing my knee up to my chin. Sciatica can be mild to moderate to severe. Since my initial surgery that pain is all gone. I'm having mild sciatica since my revision surgery at L5 in the right leg and that is located in the lower lateral leg and my big toe. You can google sciatica, and the nerve roots to see where the pain locates. Good luck!

ADMoul
12-26-2010, 08:40 PM
My leg issues were on the left side, only from the knee on down. It wasn't pain but numbness and tingling into my foot. I even had a minor nerve release procedure done on my peroneal nerve about a year before my surgery. After so many years of standing with so much more of my weight on that side, I had sort of a carpal tunnel thing going on in the lower leg nerve. That procedure helped a little, but the nerve thing was totally relieved by my surgery.

kennedy
12-26-2010, 11:46 PM
hi it chould be a number of problems

karena
01-01-2011, 10:29 AM
Last November I had what you described (plus other things). But that was the main problem down to the foot (left side too). After trying everything, plus painful injections to close a vein (kind of right thing to do but not cause of pain) I saw 3 surgeons in town, and after MRI's found L4-5 disc was shot dripping onto my nerve (sciatic) which caused numbness. In my case, I had to have surgery or I would lose my leg. I wouldn't fool around with numbness. They said nerve damage is very probable the longer you wait. Get to a scoli surgeon and get MRI's and please let me know what is going on.

titaniumed
01-01-2011, 10:59 AM
Evelyn

Usually the leg pain is caused from an impingement down low, in the lower lumbar area. I had 4 ct verified herniation’s in this area back in 2002, and was one of the indicators for my surgeries. I was running out of time.

What is it with all the “lefties” here ? I had my sciatica on my right side. lol

Severe sciatica in my case felt like a horse kicked me in my hip (greater trochanter) and I also had the “flame thrower” on the top of my ankle. I tried everything to postpone, and the one thing that did help was ocean therapy. Swimming in the ocean helped de-weight my spine and the discs did retract probably due to the “elasticity” of the disc. NSAID’s also helped.

I had about 4 sciatica events over those 6 years, with the longest being 9 months.

It also seemed that either the pain was a 1 level tingle or numbness, or full strength 10 level pain, with no in between setting. It’s the 10 level deep sciatica pain that steered my thoughts to surgery.

Full blown sciatica is devastating. It completely cripples you.
Ed

Pooka1
01-01-2011, 11:43 AM
I had about 4 sciatica events over those 6 years, with the longest being 9 months.

This completely blows my mind.


It also seemed that either the pain was a 1 level tingle or numbness, or full strength 10 level pain, with no in between setting.

This is very close to how I would describe my herniated disc situation which was either 0 or 10. Was this traced directly to your herniated discs?


It’s the 10 level deep sciatica pain that steered my thoughts to surgery.

My thoughts were steered towards throwing myself under a bus. (smiley face).

I would not have lasted 9 months as you did. That blows my mind.


Full blown sciatica is devastating. It completely cripples you.
Ed

I am having what I would say are mild episodes of that. You are scaring me about if it gets worse. (smiley face)

loves to skate
01-01-2011, 12:39 PM
Ed, My sciatica was on the right side. That"10" sends you right to the hospital ER. What I couldn't understand was why I was never x-rayed to find out what the problem was. Give the old girl a shot of Demerol and a script for Percocet and send her on her way.

JenniferG
01-01-2011, 04:37 PM
A herniated disc sent me to hospital, but I may as well have stayed at home. They couldn't x-ray me properly due to my level 10 pain and the morphine drip that didn't make any difference whatsoever. They assumed it was a herniated disc. They gave me Panadeine Forte:rolleyes: which also did absolutely nothing. I checked myself out at day three when it was apparent they were not going to help me. This was our local public hospital. It was 6 weeks before I could hobble painfully outside and stand for more than 15 seconds. 10 months of agony before it eased up. I wouldn't wish a herniated disc on my worst enemy. My fusion surgery was a walk in the park in comparison. No kidding.

jrnyc
01-01-2011, 06:41 PM
well, that is a comfort...because i have been living with herniated discs for years now!
the pain has gotten much worse in the last 2 years...degenerative disc disease is no fun!
nothing seems to help....i have tried all the injections...and facet block, and nerve ablation, etc etc...

i never believed sciatica was a big deal...for years, it rarely bothered me...now it is daily pain from it...the nerves, numbness and tingling go beyond, into pain...amazing...quite a shock! nothing has helped the sciatica, either...

soooo..if you say herniated disc pain is worse than fusion, then i guess i should be able to withstand fusion....? it isn't even the pain that scares me so much...it is the fusion to pelvis that has me frozen in my tracks...

jess

JenniferG
01-01-2011, 08:15 PM
I know Jess. I wish I could somehow take away your fear about being fused to pelvis but I am not sure what aspect of it concerns you the most. I know you're very familiar with pain, and you will cope with the pain of surgery very well.

jrnyc
01-01-2011, 10:31 PM
thanks, Jenn
now if i could just get all the stuff out of my head about robots....
and big bellies, and fatigue for 2 years, and pain at screw sites (which surgeon already told me i'd feel due to being extremely thin now, and small boned)...i am back down to 92 pounds, struggling to avoid the 80's!

Lonner told me i would most likely need screws removed after a year...even with minimally invasive approach...i remain frozen...not going forward, probably getting worse...

this is not to complain...i know it is my decision, and mine alone...
i admire all who have made their decisions...including you!
i guess at some point, i may be forced to...

jess

naptown78
01-02-2011, 03:50 PM
thanks, Jenn
now if i could just get all the stuff out of my head about robots....
and big bellies, and fatigue for 2 years, and pain at screw sites (which surgeon already told me i'd feel due to being extremely thin now, and small boned)...i am back down to 92 pounds, struggling to avoid the 80's!

Lonner told me i would most likely need screws removed after a year...even with minimally invasive approach...i remain frozen...not going forward, probably getting worse...

this is not to complain...i know it is my decision, and mine alone...
i admire all who have made their decisions...including you!
i guess at some point, i may be forced to...

jess

Jess,
Just to address your concerns about fusion to pelvis, as you know, I was fused to the sacrum first and then extended to the pelvis. I have not really noticed a difference in flexibility. The screws don't bother me and I don't anticipate removal. I am small boned and very small as you are (although not 90 #). Do you think after fusion, when you are not taking so many narcotics, that you will gain weight? I am not a walking robot either, and I wish I could alleviate that image from your mind. Honestly, after 2 surgeries, my limitations are that I bend from my hips instead of my waist. The way this affects me in my daily living is when I put on my shoes, I have to pull up my leg instead of bending over to tie my shoe. It just takes a little longer. And getting things out of the dryer , while getting easier all the time and is doable, just requires extra effort. I can't turn to look at something behind me without turning my whole body so I might miss something if hubby says "look at that!" while we are driving. I'm just not as quick. Overall though, it's been worth it to get rid of the disabling sciatica and back pain I was experiencing. Oh, and I don't have a big belly!

JenniferG
01-02-2011, 06:39 PM
Kristy pretty much said it all. Any residual effects of the fusion to pelvis, are nothing in comparison to continual pain. I hope we and others, can help ease your mind somewhat on the fusion to pelvis aspect, Jess.

jrnyc
01-03-2011, 05:05 AM
thanks Kristy...for the descriptions, and the reassurances...
and thank you, Jenn, for same....

i guess it is difficult to imagine how people are after surgery, without seing it up close...or watching someone move after they have healed...
the best i do is imagine it...

but i deeply appreciate your kind efforts...

wishing you a healthy and happy 2011
jess

kidbusiness2
01-03-2011, 01:00 PM
I am sorry to hear you are having leg pain. I have suffered from leg/&nerve pain for the last 15 years. I also have disc degeneration in my lower back, lower disc's. I have tried many different things, nothing is working. Never had surgery for my scoliosis. I think I need to have another MRI. My leg pain is mostly on the LEFT side and down. Starts in my left buttock and runs down to my foot off and on. I ALSO have arthristis/bersitis in my LEFT hip already which gives me quite a bit of pain. I am glad to hear that many other people are experiencing what i am though and that i'm not alone. BEcause it often seems like a lonely battle!

jrnyc
01-03-2011, 02:48 PM
some people get help with nerve related pain with neurontin...
it never helped me, but i know it has helped others
the trouble is, it can make you really sleepy...so if you have to drive, go to work, etc, that is an issue...

i have yet to find anything that helps disc pain besides oral pain meds (or limited use of steroids)...
i got 3 weeks of glorious pain free time with a sacroiliac joint injection...that was it...

nothing has helped my sciatica yet, either...

i hope others have better luck...

jess

Confusedmom
01-05-2011, 06:16 PM
Thanks so much, everyone, for all the responses!

My leg pain is the right leg and now I'm pretty sure it's sciatica. Looked up the dermatome and it could have been a diagram of me. Mine's from listhesis at L3/L4, I'm pretty sure. In my case it's about a "2" most of the time, but if I stand or walk slowly (think shopping) for a long time, it creeps up: 4,5,6, okay time to lay on the couch!

I am calling Dr. Lenke's office this week and will schedule surgery (again). But I'm sure I'll have to wait over a year. If it gets debilitating before that, I will go with Dr. Bridwell or whoever will have me!

Now it's time to lose those extra pounds and start my "training" for surgery!

Jess, I can vouch for Kristy that she is tiny and not robot-like at all. Very inspiring, actually! And Bridwell told me that I will be "T3 to S1 with pelvic fixation." That's what you're talking about, right?

Thanks again everyone,
Evelyn

P.S. Mine is on the right, Ed.

Confusedmom
01-05-2011, 06:28 PM
Karena,

I've never heard it could make you lose your leg. Yikes! I'll be getting to the doctor soon, thanks.

Evelyn

LisaB
01-05-2011, 07:39 PM
Hi Evelyn - I had leg pain before my first surgery and then numbness. It was due to my spondylolisthesis at L4-L5. After my first surgery the leg pain and numbness were completely gone. I just wish I would have known about Bridwell back then because, although I have not asked him, he probably would have fixed everything in one surgery. But because I had the first surgery, I think that is why he didn't have to end up going all the way to the pelvis and could just fuse me to L1, keeping L2 and L3. Anyway, if you start to get numbness you should probably think about moving up surgery. Sasso told me I could end up with permanent nerve damage if I didn't get the spondy fixed. Good luck. If you end up with an appt the end of Feb, let me know and we can ride over together. My next Bridwell checkup is Feb 28.

jrnyc
01-05-2011, 08:10 PM
hi Ev
yup, i need T4-pelvis, but we agreed on T11-pelvis if i keep going for botox shots in thoracic area...

i need "pelvic fixation," so they may call it going to S1, but if you need pelvic fixation, and i don't know if all who go to sacrum do, then it is like fusion to pelvis in my book...

thanks for the encouragement...
i have never met anyone with fusion to pelvis, and i think that would help...just to watch them move...
because to me, fusion to pelvis is different than fusion to L2 or L4...

jess

Confusedmom
01-06-2011, 01:18 PM
Thanks, Lisa. I'll aim for Feb. 28th and let you know if I get the same date!

:),
Evelyn