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  1. #1
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    Leg Numbness post surgery

    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
    34 Years old from Cheshire, UK.

    Scoliosis correction surgery and costoplasty on a double 85degree curve 29th July 2010. Fused T3 - L3

    My blog: https://lifewithscoliosis.com/

  2. #2
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    Hello and hope you can find your answer. The only test I know of that you haven't mentioned is a myelogram. I have a condition called arachnoiditis, it is similar for me and is only manageable but not curable. The condition was found through the myelogram
    T10-pelvis fusion 12/08
    C5,6,7 fusion 9/10
    T2--T10 fusion 2/11
    C 4-5 fusion 11/14
    Right scapulectomy 6/15
    Right pectoralis major muscle transfer to scapula
    To replace the action of Serratus Anterior muscle 3/16
    Broken neck 9/28/2018
    Emergency surgery posterior fusion C4- T3
    Repeated 11/2018 because rods pulled apart added T2 fusion
    Removal of partial right thoracic hardware 1/2020
    Removal and replacement of C4-T10 hardware with C7 and T 1
    Osteotomy

  3. #3
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    Quote Originally Posted by jackieg412 View Post
    Hello and hope you can find your answer. The only test I know of that you haven't mentioned is a myelogram. I have a condition called arachnoiditis, it is similar for me and is only manageable but not curable. The condition was found through the myelogram
    Thanks for your reply Jackie, I appreciate it. I'm planning on going back to my Dr to see what (if anything) else test wise can be done. It's just exhausting and it's getting me down. Apart from this I've been doing really well post surgery. I just hate not knowing the cause.
    34 Years old from Cheshire, UK.

    Scoliosis correction surgery and costoplasty on a double 85degree curve 29th July 2010. Fused T3 - L3

    My blog: https://lifewithscoliosis.com/

  4. #4
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    Hi Louise

    Here is a dermatome map...

    https://en.wikipedia.org/wiki/Dermatome_(anatomy)

    You can see that any symptoms in the feet or legs can originate from L5, (Yellow band) S1 (Red band) and also L4 (Red dots) which is below your fusion mass. Degeneration and nerve root impingement in the lowest lumbar levels under scoliosis fusion masses is something that can happen to us. It can happen without fusion, and it can happen without scoliosis.

    How numb do you get? 1-10 scale?

    Did you make it to Machu Picchu?

    Ed
    49 yr old male, now 62, the new 63...
    Pre surgery curves T70,L70
    ALIF/PSA T2-Pelvis 01/29/08, 01/31/08 7" pelvic anchors BMP
    Dr Brett Menmuir St Marys Hospital Reno,Nevada

    Bending and twisting pics after full fusion
    http://www.scoliosis.org/forum/showt...on.&highlight=

    My x-rays
    http://www.scoliosis.org/forum/attac...2&d=1228779214

    http://www.scoliosis.org/forum/attac...3&d=1228779258

  5. #5
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    Quote Originally Posted by titaniumed View Post
    Hi Louise

    Here is a dermatome map...

    https://en.wikipedia.org/wiki/Dermatome_(anatomy)

    You can see that any symptoms in the feet or legs can originate from L5, (Yellow band) S1 (Red band) and also L4 (Red dots) which is below your fusion mass. Degeneration and nerve root impingement in the lowest lumbar levels under scoliosis fusion masses is something that can happen to us. It can happen without fusion, and it can happen without scoliosis.

    How numb do you get? 1-10 scale?

    Did you make it to Machu Picchu?

    Ed

    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.

    Unfortunately I didn't make it to Machu Picchu due to the pandemic, I'm hoping to still make it there. I have rearranged it for October but will have to see what happens I guess!!

    Louise
    34 Years old from Cheshire, UK.

    Scoliosis correction surgery and costoplasty on a double 85degree curve 29th July 2010. Fused T3 - L3

    My blog: https://lifewithscoliosis.com/

  6. #6
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    Northern California
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    Hi Louise...

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

    --Linda
    Never argue with an idiot. They always drag you down to their level, and then they beat you with experience. --Twain
    ---------------------------------------------------------------------------------------------------------------------------------------------------
    Surgery 2/10/93 A/P fusion T4-L3
    Surgery 1/20/11 A/P fusion L2-sacrum w/pelvic fixation

  7. #7
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    Quote Originally Posted by louise_23 View Post
    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
    49 yr old male, now 62, the new 63...
    Pre surgery curves T70,L70
    ALIF/PSA T2-Pelvis 01/29/08, 01/31/08 7" pelvic anchors BMP
    Dr Brett Menmuir St Marys Hospital Reno,Nevada

    Bending and twisting pics after full fusion
    http://www.scoliosis.org/forum/showt...on.&highlight=

    My x-rays
    http://www.scoliosis.org/forum/attac...2&d=1228779214

    http://www.scoliosis.org/forum/attac...3&d=1228779258

  8. #8
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    Quote Originally Posted by louise_23 View Post
    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.
    Last edited by Pooka1; 02-18-2021 at 02:44 PM.
    Sharon, mother of identical twin girls with scoliosis

    No island of sanity.

    Question: What do you call alternative medicine that works?
    Answer: Medicine


    "We are all African."

  9. #9
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    Sep 2019
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    Quote Originally Posted by louise_23 View Post
    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?
    Last edited by Tina_R; 02-19-2021 at 05:30 PM.

  10. #10
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    Quote Originally Posted by Tina_R View Post
    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
    34 Years old from Cheshire, UK.

    Scoliosis correction surgery and costoplasty on a double 85degree curve 29th July 2010. Fused T3 - L3

    My blog: https://lifewithscoliosis.com/

  11. #11
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    Sep 2019
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    Quote Originally Posted by louise_23 View Post
    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.

  12. #12
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    Quote Originally Posted by Tina_R View Post
    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
    34 Years old from Cheshire, UK.

    Scoliosis correction surgery and costoplasty on a double 85degree curve 29th July 2010. Fused T3 - L3

    My blog: https://lifewithscoliosis.com/

  13. #13
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    Quote Originally Posted by louise_23 View Post
    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.

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