Leg Numbness post surgery

[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.

[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

[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

[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]

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

[louise_23]

Louise, Thinking about this some more, I agree with Sharon, a 6 level numbness is a bit high..... especially in a leg.

Try not to get too jumpy about this....if you do join the pelvis club at some point, it's all right. And I did do some great hikes after I was done....I was much older also.

Angels landing Zion National Park
Swiftcurrent Pass Glacier National Park
Iceberg Lake Glacier National Park

https://www.youtube.com/watch?v=pER3...el=NikhilShahi
https://www.youtube.com/watch?v=22HY...ettGalv%C3%A1n


We did have a 32 year old member fused to the pelvis last July and she turned out great. We are all S curve patients.

Any reason why they did an MRI of your head? Was anything said about this?

Nice VLOG....I remember when you were done years ago...

Ed

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.

[louise_23]

Hey I looked at your blog. That's a very nice resource for scoliosis.

The other thing I want to mention and Linda can confirm or deny is that you have a time window to address these peripheral symptoms. If you wait too long, the symptoms might not be reversed. How long have you had the numbness? I get the impression you are very schooled in soldering on which is a very admiral trait except when dealing with time windows. Depending on what Linda says, I would be physically standing on some surgeon's desk asking for emergency surgery if it was likely to reverse the numbness.

It is not a mystery why you are having symptoms 10 years out from a fusion to L3. It is expected. You are still young, though, and they may not want to fuse a person your age to pelvis even if that is what is likely to get rid of your symptoms. Or they are rationing spine surgery. Either case, I think avoiding life-long numbness or worse should push you up in the line.

Good luck.

Thank you very much!

The numbness has been there for about 3 years now, I'm kind of resigned to the fact that it's permanent. It doesn't stop me from doing anything it's just annoying as I can always feel it, especially when I have shoes on as they press on my toes and make it more uncomfortable. I'm in the process of getting a second opinion via my work's health insurance, so will keep you updated. I saw a neurologist and he told me it was likely due to an injury, which I'm not sure about as I don't remember being injured.... It's stressful to be honest.

[Tina_R]

Hi all,

Hope everyone is well

I had scoliosis surgery around 10 years ago now for fairly severe adolescent idiopathic scoliosis when I was 24. I had a double "S" curve of around 80 degrees pre surgery, which was corrected by around 50-60%. I have largely been pleased with the results of my surgery and went on to do many amazing things post recovery. However, in the last few years I have developed numbness down my right leg, that wasn't there before. I don't have pain at all, it's just numb down my leg and into my toes. It's been that way for years now. Since developing these symptoms, I have had nerve conduction tests, blood tests and MRI scans of my head and whole spine to investigate. My original surgeon has looked at the scans, as well as a neurologist. They have said that based on the scans, they don't know the cause of this numbness, as there is nothing that would cause this showing on the scans and that I just have to live with it. It causes me great anxiety because I don't know the cause or if it will get worse and it's there all the time. I have other numb patches on my body, most of my back is numb from the surgery. I also have a numb patch on my stomach which I'm not 100% sure has always been there or not. Anyway I suppose I just wondered if anyone else had experiences like this? Part of me thinks it surely must be something to do with my back and my surgery but I just don't know.

Louise X

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?

[LindaRacine]

The other thing I want to mention and Linda can confirm or deny is that you have a time window to address these peripheral symptoms. If you wait too long, the symptoms might not be reversed.

You'd have to check with a neurologist to be certain, but some injuries are mild enough to be temporary, and can be reversible, while others are severe and can't be reversed. From listening to patients for as long as I have, I would venture to say that at least some of those temporary injuries eventually become permanent.

[titaniumed]

Louise, Thinking about this some more, I agree with Sharon, a 6 level numbness is a bit high..... especially in a leg.

Try not to get too jumpy about this....if you do join the pelvis club at some point, it's all right. And I did do some great hikes after I was done....I was much older also.

Angels landing Zion National Park
Swiftcurrent Pass Glacier National Park
Iceberg Lake Glacier National Park

https://www.youtube.com/watch?v=pER3...el=NikhilShahi
https://www.youtube.com/watch?v=22HY...ettGalv%C3%A1n


We did have a 32 year old member fused to the pelvis last July and she turned out great. We are all S curve patients.

Any reason why they did an MRI of your head? Was anything said about this?

Nice VLOG....I remember when you were done years ago...

Ed

[Pooka1]

Hey I looked at your blog. That's a very nice resource for scoliosis.

The other thing I want to mention and Linda can confirm or deny is that you have a time window to address these peripheral symptoms. If you wait too long, the symptoms might not be reversed. How long have you had the numbness? I get the impression you are very schooled in soldering on which is a very admiral trait except when dealing with time windows. Depending on what Linda says, I would be physically standing on some surgeon's desk asking for emergency surgery if it was likely to reverse the numbness.

It is not a mystery why you are having symptoms 10 years out from a fusion to L3. It is expected. You are still young, though, and they may not want to fuse a person your age to pelvis even if that is what is likely to get rid of your symptoms. Or they are rationing spine surgery. Either case, I think avoiding life-long numbness or worse should push you up in the line.

Good luck.

[louise_23]

Thanks all.

I've decided I'm going to try and get another opinion and also see if I can contact my surgeon again as well. I won't give up on this! Even though it is exhausting at times.

Thanks for your help :-)

Louise

[Pooka1]

Reading my notes from my MRI a few years ago it said there was degenerative change in L5/S1 with dehydration and marked loss of height - no idea what that means though. The notes say there is no obvious relation between the scan and my symptoms so it's confusing.

Does your surgeon answer email questions?

This response sounds to me like they are using a hyper technical correct statement to avoid what is widely known and what appears to be obviously happening to you. The degradation below your fusion could have been predicted to cause your problems and they known it. Fusion to L3 or below often starts a countdown to needing further fusion. They are trying to avoid placing you back on the surgery list in my opinion.

I would email the following questions...

1. Is there really any doubt that the discs below fusion have been compromised by my fusion ending in L3 and that is the reason for the symptoms?

2. Would fusing more levels below my fusion likely stop progression of the numbness?

3. Will fusion ASAP have a chance of reversing the present level of numbness?

Good luck.

[titaniumed]

Hi Ed,

Thanks for your reply would this kind of thing show on an MRI? Reading my notes from my MRI a few years ago it said there was degenerative change in L5/S1 with dehydration and marked loss of height - no idea what that means though. The notes say there is no obvious relation between the scan and my symptoms so it's confusing. The numbness is always there now, it's probably around 6. I can still feel but it's like a loss of sensation down my leg and I have lost my ankle reflex also on the right side.

Yes, with MRI they can see degenerative changes however, imaging can be a challenge for many different reasons.....You do have a prior MRI history of degenerative changes with dehydration.... Discs will dehydrate, it's the start of the degenerative process in spinal discs. Just because they have not found anything conclusive this time, doesn't mean there isn't a problem. (And they know that)

ABCs of degenerative spine. This is a good article!
https://www.ncbi.nlm.nih.gov/pmc/articles/PMC5893484/

The fact that they cannot establish a relation or cause of your numbness, (It's a signal) I agree with Linda on getting a second opinion. I can't remember the British surgeons but if you reach out to some of the others from the old SSO forum, they will be able to help you find the right specialist. Some were done at Stanmore. Jay Moe and Spinals have posts here, so does Tonibunny. You would have to look to see if they mention their surgeons. Or PM, or reach out to them.

My left hand goes numb every once in a while due to 2 cervical herniations C5/6, C6/7 from many years ago. I did a Medrol pack (Oral steroids) and diclofenac on that one, and all the pain is gone...You simply touch the spinal cord with a minor herniation, and it can cause all sorts of pain and numbness. Same for the nerves that exit the spinal cord from the sides. In scoliosis, when spinal discs collapse some, it leaves less room for nerves and numbness and pain can result. When surgeons use spacers in the lumbar spine, those spacers lift and separate the vertebrae and create room for exiting spinal nerves. I have 5 spacers, all 13mm thick made from PEEK which is a white plastic. You can't see PEEK on x-ray, but you can see the markers on my x-rays. There are 3 of them on each lumbar level. This is how they check to see if they move after surgery.

When this happens, inflammation becomes a problem. NSAID's or prescription anti-inflammatories help a lot. Celebrex, Diclofenac, Naproxen are examples. Ask your doctor for these. They are good to have on standby. I have a 18 year on and off history using these. When taking these meds, follow directions. Do NOT abuse NSAID's.
https://en.wikipedia.org/wiki/Nonste...lammatory_drug

In Colombia last year, I bought Diclofenac over the counter without a prescription for $3. If you go to Peru, get some in Lima before you go up there. Find a Drogueria....It will save you in case you get into trouble. Diclofenac or Celebrex is good.

I never travel without NSAID's

Ed

[LindaRacine]

Hi Louise...

I would consider getting a second opinion from another scoliosis specialist.

--Linda