View Full Version : Susan's nerve pain

03-22-2011, 10:50 PM

I just got off the phone with Susan from Bend, Ore. She wanted me to ask to see if anyone had leg nerve issues and how everything panned out for them. She does not have her laptop with her.

If you remember, she had a difficult A/P around Jan 28th, then had a revision last week where her surgeon repositioned her lower hardware and a screw. I guess it was impinging on a nerve, and she also had the situation where the bone was growing around her nerves down low.

She has been up in Portland for 2 months now, and is walking with a walker, but after a 5 minute walk her right hip and knee seem to give out. She is looking for reassurance in the fact that her situation will improve. Since she is only a week out from her revision, it is early, but would like to hear or read any stories from similar cases, when she goes home this weekend.

She is having surgical pain, and really has been through a lot. She was fused T4-pelvis.

03-23-2011, 12:18 AM
I donít know where Susan is at, I didnít ask. I donít think she can make it over to visit Elisa and Elias, her limit right now is at about 100 feet. She is really tired of playing doctor. I know what she is talking about, after a while itís a major drag.

I feel sorry for Elias. He will feel his first surgical painís tomorrow....

03-23-2011, 07:08 AM
Ed, I'm sorry to hear about Susan's complication. I had extreme right-leg nerve pain and weakness for several months after my surgery; I used a walker for three months and a cane for three more. My leg also gave out on me a few times. I never got satisfactory answers from Dr. B when I pressed him for an explanation, although he said he suspected nerves had been "stretched" or "compressed" during the anterior portion of the surgery.

What helped me the most was three rounds of gentle PT that focused mainly on strengthening the leg. Some of the PT involved using an electrical stimulator applied to the weak quad muscles near my knee and thigh. The only equipment I used was a recumbent bike and eventually the treadmill although most of the work I did was in a chair or on a mat.

It was very frustrating and scary, but now my leg is almost completely back to normal..it's probably at 90 percent and will likely stay that way. The nerve pain took a few months to go away and my right thigh is still a bit more sensitive than the left, but not enough to bother me. I was told over and over again that it takes a long time for nerve pain and damage to heal, and they were right!

I also had a nerve-function test at one point which indicated that the muscles were indeed firing but that they were weak. I think it was called an EEG? -- not sure -- but the surgeon prescribed it.

03-23-2011, 08:08 AM
I certainly had trouble with my right hip when walking for the first 3 or 4 months. The knee was never a problem. I was walking with a walker most of that time. I would get to the end of the block and my right hip would just be throbbing and I'd have to go back. I still sometimes have trouble but nearly so much. Strangely, if I walk now at a good pace--no problem. But if I am just going along or stop and start a lot like when I'm shopping it will start again. Then I just have to take off at a smarter pace and it's usually OK. I sure hope Susan gets relief soon and hope this kind of pain will just be early recovery kinds of problems. Janet

03-23-2011, 10:56 PM
Chris & Janet

I left a message on Susanís phone and she has not responded. I will read your responses to her when she calls me, she just wants to hear it from someone else, she will be thankful.

You refreshed my memory. I know its not too common. I was achy, but I didnít have nerve issues like what you and Susan experianced.

I think you are referring to an EMG. Funny, I have had a few needle EMGís through the years with several surgeons, but not with Dr Menmuir....hmmm.

You are coming up on 2 years! Congrats in advance. So, what do you think?


03-24-2011, 07:54 AM
Ed, I'm so sorry to hear about Susan's continued pain. One month out, the frustration and caged feeling drags me down from time to time.... I'm an impatient girl. Granted, the snow we keep getting doesn't help my mood either!!!

I have what I suppose is nerve pain on both hips - like at the piriformis - on both sides. It's strong enough that I feel it from deep within, at the piriformis, all the way to my skin. My skin actually hurts and it extends about 8 inches down on each hip. Very annoying and I know it's due to changes to my gait. My surgeon said it's common and should go away "within 4 to 8 months". Fantastic.

Best of luck to Susan!

03-24-2011, 12:32 PM
Lily, I hope you and Susan both have better reports later as you recover.
Ed, thanks for asking. I'd still do it again and basically all would see me and think it's OK. We were in Orange Beach AL for 2 weeks and it felt really good. Back to Iowa a day and then to Minneapolis to babysit our 22 month old grandson. Snow and cold--I feel it but guess that's pretty normal.
I still have the difficulty with discomfort/sometimes pain at the spot where my top curve was the greatest.I can pick up my grandson but I really pay for it no matter how carefully I do it. I really avoid it which I hate to do and depend on my husband and just try to pull him up on my lap which I can feel too.
Still not happy with the rib hump that has evolved since surgery & the most burning pain I feel is after any housework etc. I really feel it in the left top shoulder neck.
I still do lots of exercising & getting back to using the same weights as pre-surgery.
I would just like to be to that spot where it's not on my mind all the time! I know I'm still pretty lucky over all though. Janet

loves to skate
03-24-2011, 10:03 PM
I am three + years out from my surgery and still have intermittent nerve pain in my right leg. I have never had any weakness in that leg other than all over weakness from the surgery and spending so much time sleeping during recovery. I never needed a walker for more than a couple of days in the hospital. My hips and knees give me problems sometimes, but I don't think it is related to the scoliosis surgery. Probably just some arthritis in my joints.

03-31-2011, 10:25 PM
Susan finally called me and she is back home after 2 months, and 3 surgeries.

She is hanging in there and feeling a tad better, but cannot sit down more than a minute which is the norm. She will post when she can.

One day at a time.
Chris, I will PM you

04-11-2011, 09:49 PM
A great big thank you to Ed who has been of great help and inspiring confidence for me, and to all of you who responded to this post to offer your experiences with nerve pain. It's been a bit of a rough go and I won't be on here long because sitting and being on the computer is something I can still only do in small doses. Still having lots of nerve pain and some back pain but little by little I am improving. I was worried about the numbness and pain but it sounds like giving it time, as my doctor has told me, should ease the pain. I am walking with trekking poles out through my pasture now (the walker is no good off of smooth surfaces) and have home health now (wound is healing slow) and home PT which is great til I can drive again. I worry about nerve damage, but you've all allayed my fears. I'm glad to be on the other side, and as the days brighten so do I. I'll write more later. I have truly appreciated all of your kind and caring words!!!

05-07-2011, 09:54 PM
You may have gotten all the feedback you need, and I am latent checking into the website. Haven't for awhile. I am 8 months postop and am still having nerve pain. My abdominal wall was stretched not cut and I am the 1% of XLIF patients that get this (whoopee) so my abs are kind of sore, but the groin and thigh are hot/cold/pins/needles all the time. I understand this will go away with time. It changes and I hope change is good. THe other side is an issue. That was the side that had the curve going that direction and my calf/shin/foot are numb before and now after surgery. They said a rule of thumb since the numbness was 1 yr prior to surgery expect at least a year before I see any relief. Others have said years, others said forever. I am not even thinking that direction. I am keeping my direction up and forward. I have done everything possible physically, and supplemental as well as a frequency nerve stimulation process. Did nothing. I continue the physical work and supplements as long as it takes. Email me if you need more info.

05-07-2011, 11:42 PM

Nice of you to post. Sorry about your soreness and numbness. At 8 months out, you are still in your recovery.

I have not talked with Susan is a while. She has to be improving.

To be truthful, I have been having hip, and knee problems. At the end of the day, sometimes Iím whooped. I was at Crystals clinicians ceremony at UNR last night sitting on the hard chairs, and barely made it back to the car. I did work pretty hard yesterday at work so, maybe that explains some of this. She will be assisting in surgeries starting next month down in Vegas. Uncle Ed is very proud.

I know somebody with huge curves in Texas. She is 68 and on heavy meds and in MAJOR pain and she will not do surgery. I know I wouldnít have made it to 68, there is no doubt in my mind at all. Scoliosis can be devastating. Sometimes we do surgery, we really have no choice in the matter. I am thankful everyday. I am thankful for all the surgeons, as I got struck by lightning a few times.....


05-08-2011, 05:06 AM
hi Ed
don't mean to hijack the thread...so am sending you a private message....
but am wondering if knee problems could be ski related...?


05-08-2011, 12:35 PM

Hijack the thread? No way!

Iím just working too hard and its proof that the surgery worked.

Sitting in a hard chair at the school can make me very sore in the hips. This has happened before. Itís the modern stackable chairs.....my knee issues are probably ski related.

Diet is very important, and I need to lose weight. You know what that means?

Back on the soup.........time to reprogram.

05-08-2011, 07:46 PM
I must admit, I could live on soup. I love it.

Hope a little weight loss and a little rest goes a long way to helping your hips and knees Ed. Do it soon. You've had your share of pain and you don't want more than your share.

05-21-2011, 06:31 PM
Hi Ed - wow, I had the same soreness after doing a full day at Mt View Hospital orientation. Ouch!! On the sore hip/knee thing, could it be your hip(s)? I know my left hip is bone on bone due to the scoliosis and affects so many parts of my body. Bad hips can create pain all the way down to the feet I understand. I just figure if we had scoliosis surgery, and our bodies are freaking out trying to figure out what to do now, that there must be several time-consuming adjustments the body undergoes.


05-21-2011, 07:29 PM
Hi all,

Thanks so much for the feedback on the nerve pain. It is always good to know what others are experiencing and get some idea of how long this might go on. Ed, sorry to hear you are having some hip/knee problems. All this reminds me of the old song 'the knee bone's connected to the thigh bone..." it seems like a chain reaction).

I am now two months out from my third and final surgery (revision after A/P fusion T4 to pelvis) and the nerve pain hasn't slowed down much. The revision surgery was to remove a screw that had penetrated a nerve root at L5. The hope is there won't be permanent damage as a result, Dr. Hart doesn't think there will be. My whole right leg is still basically numb with lots of nerve pain, but my biggest complaint remains pain and swelling (lots of joint fluid) coming off my right hip, causing severe pain in my low back/hip, groin, and along the iliac crest. My knee is now affected with fluid coming off of it as well. The pain is worse with exercise. At one point I thought it might be some sort of abcess because I can't put any pressure on it and it feels like there is a knot in there. There isn't one, but that's what it feels like (well, what I would imagine one felt like, I've never had one but I've had horses get them in their hooves and they go dead lame until you get them out). Anyway it has begun limiting my walking. I used to walk quite a bit and now I can't go as far before that leg gives out. I am thinking of using crutches instead of trekking poles. It feels like it may be spreading over to my left hip as well.

They think my hip pain is bursitis, I am going to get hip injections as soon as my pain levels settle down enough to do the injection. Yikes! Not looking forward to that. But, heck, I've made it this far and improvement may be slow but it is steady.

I am so thankful to have surgery behind me, can't wait til I can resume my 'normal' daily life. I definitely plan to ride again. Oh, and I grew an inch! I only got 20% correction because there was so much arthritic fusion already, so I was pretty impressed that Dr. Hart was able to get me standing up straight and an inch taller. I used to pitch forward quite a bit before surgery.

Thanks again to everyone for responding and sharing their experiences, particularly Ed who has been sort of a mentor to me through this whole thing. You all rock!

05-21-2011, 08:20 PM

Many of my full scoli x-rays include my hips. Iím sure my surgeon has glanced down there, after all, its part of the skeletal package....chuckle,chuckle, Iím assuming my hips are ok.....

Iím so glad that these last winter storms have passed. Iím sure that everyone will be feeling a little better now that spring is finally here. In the past, I might have weather related pain and many will post complaining of pains here on the forum.

Chatted with Susan the other day and she is getting better slowly....If you have an A/P at age 50 with big curves, you are not going back to work in 90 days....thatís a guarantee. Healing takes time...

If you have a hip problem, we have a hip genius up here....Dr Jeff Mast. He is a hip pioneer. I have friends working with him on various devices.....really really neat stuff.