Leg Numbness post surgery

[louise_23]

Louise, I'm going through a similar thing with neurological problems developing after surgery. I've posted about this before. I had fusion surgery in 2019. Nearly all of my back is fused. I had some pain and numbness on my back immediately afterward and they have seemingly spread and increased since. In fact a lot of things have developed since. An exquisite variety of pain, numbness, pins and needles, tingling, tightness, stiffness, weird sensations of all kinds, gait problems.

It's been a dilemma for me because several spine surgeons looked at my radiology and say there's nothing wrong with the spine, therefore it has to be neurological. Two neurologists did EMG tests and blood tests and were unimpressed with the results (too normal) and don't have a clue.

Like you, I am worrying that nerve damage can be permanent if left too long without being fixed. So I feel as though I have a time limit to get this solved and I feel pressured to find a cause soon.

I'm curious, what developed for you after several years? Just the leg numbness? Did you have the back numbness from the day you came out of surgery?

Hi Tina,
I understand what you are going through trust me.
I had back numbness from the day I came out of surgery, around the scar, which I think is fairly normal after this type of surgery. Most of my back is numb now but I don't really notice it to be honest. It was the leg numbness that developed about 7 years after my original fusion surgery. It started in my thigh and now goes down my leg into my foot. This wasn't there before so was a new symptom which is what worried me. But, like you, I've seen both a neurologist and my scoliosis surgeon and both have said they do not know the cause from the scan results. I also have a numb patch on my stomach but I'm not sure how long that has been there now.

Louise

[Tina_R]

Hi Tina,
I understand what you are going through trust me.
I had back numbness from the day I came out of surgery, around the scar, which I think is fairly normal after this type of surgery. Most of my back is numb now but I don't really notice it to be honest. It was the leg numbness that developed about 7 years after my original fusion surgery. It started in my thigh and now goes down my leg into my foot. This wasn't there before so was a new symptom which is what worried me. But, like you, I've seen both a neurologist and my scoliosis surgeon and both have said they do not know the cause from the scan results. I also have a numb patch on my stomach but I'm not sure how long that has been there now.

Louise

I've seen a slew of doctors, orthopedic spine and neurological. Since the hardware in my back prevents a clear MRI, I think it's something in the spine that they just can't see. I'm still going to see one more neurologist, from the famous big city hospital near me, and see if they can offer anything new. Otherwise I'll probably have to give up because I've got so many opinions. My insurance company probably won't put up with much more.

The last neurologist I saw has been in the business for decades and said bluntly that spine surgery can cause all kinds of side effects that the surgeons won't admit to, and that these can even appear years later. It was good to hear some straight talk even if it wasn't what I wanted the result to be.

[louise_23]

I've seen a slew of doctors, orthopedic spine and neurological. Since the hardware in my back prevents a clear MRI, I think it's something in the spine that they just can't see. I'm still going to see one more neurologist, from the famous big city hospital near me, and see if they can offer anything new. Otherwise I'll probably have to give up because I've got so many opinions. My insurance company probably won't put up with much more.

The last neurologist I saw has been in the business for decades and said bluntly that spine surgery can cause all kinds of side effects that the surgeons won't admit to, and that these can even appear years later. It was good to hear some straight talk even if it wasn't what I wanted the result to be.

Hi Tina,
I think the not knowing is worse sometimes and like you, I'd rather just be told how it is. I hope you get the answers you need. If you ever want to chat, let me know. Will try to keep popping on here it's nice to speak to others in similar situations.

Louise x

[titaniumed]

Thanks Ed. I think they were checking for things like MS. This all came back normal though.
I did think having scoliosis surgery would mean I would possibly require surgery later in life to extend the fusion, although I didnt think it would be needed so soon. If this is the case, I only had about 6 years with no issues which seems quite short. Is it common to happen so soon? I wonder if it's my own fault for doing things like running after I had recovered, but I was told that I could do "anything" once recovered so thought I'd be ok. I'm blaming myself to be honest.

6 years is a short period.....especially being so young. Some of the kids have a hard time with growing rods and repeated surgeries and they are such troopers. They have that built in determination. There is a lot of trial and error with scoliosis and we need to be prepared for any changes. What's amazing to me is that there are people running around with huge 100 degree plus curves without pain. This just blows me away. There are also people without any scoliosis in major pain. Look at the photos of Tiger Woods on his knees on the golf course.....all due to 1 level. L5/S1. It took about 4 surgeries to figure that out.

I don't know what the stats are on time,(for full fusion extension to pelvis) just know that being fused down around L3 and below in full fusions usually have trouble as time passes. You can't look back and think I made any mistakes by doing surgery, or thinking that you exasperated or accelerated problems by running....It's seems logical but there isn't any proof. I made it a long time with all the high ski jumps I did. When you think about that, that's extreme spinal abuse. I don't do that anymore as my wings were clipped and I guess it's probably a good idea that you stop the running. Walking will get you there just fine....( I skied for 53 years...and quite often)

There is no doubt that scoliosis changes us and we have to be adaptable and accept all the changes. We become accustomed to pains as time passes, and I can see how you went a few years of numbness without doing too much....

Does this numbness get worse at night? Or is it better or less when you wake up in the morning? Is there any fluctuation in the numbness or is it set at a 6 level all the time?

I ask because pain usually fluctuates. I guess I had 90% pain and 10% hip and leg numbness before my surgeries. I don't remember much leg numbness because the pain was devastating. When my neck herniations happened, C5/6, C6/7, I had major shoulder and upper arm pain, and then hand or specifically middle, index and thumb numbness at 90%. Why the upper arm was extremely painful and then the hand was numb is beyond me. Maybe it was due to the 2 levels that were herniated. Not sure. Funny how pain and numbness is dependent on where and how a nerve is affected. Also nerve roots are considered peripheral but where exactly does that start? I guess it's right off the spinal cord? Peripheral nerves can and do heal but spinal cord injuries are permanent.

Clevland Clinic considers large areas of numbness an emergency (Whole legs, arms, side of body)
https://my.clevelandclinic.org/healt...21015-numbness

They do "start" with the nervous system, and then add the other causes....They start with...
1)Osteoporosis
2)Compressed spinal cord (Spinal cord stenosis) which most of us have.....
3)Herniated disc (I have read that non herniated discs can cause pain)
4)Pinched nerve...Nerve roots... Scoliosis patients have this happening with rotation and curves. This can be problematic in CT or MRI. It's like looking at a spring under a microscope with varying focal lengths. I have had complaints from CT operators years ago looking for stones, not at my spine. "I have scoliosis, and by the way, can you turn the Black Sabbath off please" I guess they thought that Ozzy worked well at drowning out the noise. (smiley face)

I have a lot of experience with optical inspection and when "you know" there is a shape or geometry and can't see it, it doesn't mean you write it off. You can't....especially if it's proven with another method. It's always 2 systems of inspection and they have to match.

You can take a fancy camera and shoot a small bird up high in a tree and not see it if the settings are incorrect. Everything has to be perfect for the shot to work. MRI and CT are the same. They are dependent on the parameters, programs and the orders. (and calibration) I think there is a margin of error and I hope we are not at the mercy of radiological variations. I think we need to assume this.

Ed

[Tina_R]

Hi Tina,
I think the not knowing is worse sometimes and like you, I'd rather just be told how it is. I hope you get the answers you need. If you ever want to chat, let me know. Will try to keep popping on here it's nice to speak to others in similar situations.

Louise x

Not knowing is psychologically hard. I don't know if my condition will stabilize or if I am heading for life in a wheelchair. I haven't outright asked any doctor this, I never get out all the questions even when I write them down. There have been daily ups and downs but I think an overall downward trajectory with the degree of pain and gait problems.

The obvious worst part of not knowing is, if the doctors don't know what something is, they can't treat it.

My original surgeon turned hostile and has all but abandoned me when things didn't work out. He goes through the motions at a minimum when forced to but acts like he would like me to get lost. I haven't returned to him after he ceased to do things he promised to do. I have seen another surgeon at the same hospital and don't feel like I can get a really independent opinion.

Not sure if you mean chat by posting on the site, by messaging here, or other means. Sure, I'm open to it, thanks. But sometimes I'm just not up to being on here for large stretches. Haven't been here for a month.