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Nerve Damage and Atrophy/Cramps

saltzworksssaltzworks Posts: 1,032
edited 06/11/2012 - 7:34 AM in Back Surgery and Neck Surgery
Hi all,

First - It's been a YEAR since my release from the hospital!! (well, shy 2 days, but who's counting ;) )

Due to some complications I was left with nerve damage. The outside half of my right leg is still numb. From the 'behind/hip area right down the middle of my leg to the small toes. The pinky toe is the 'deadest' and I am unable to move it at all - totally paralized, but I have feeling in the big toe.

I started having cramps in my right hamstring about 5-6 months post-op. Then it moved to my calf and under my foot. That's when I started PT for it.

I had been doing fairly well with preventing full-blown charleyhorses, straightening the leg, pushing the pinky toe back in, not rubbing the bottom of my foot etc. whenever I felt them come on - until this month.

Now I'm really stuck - worried too - I can't stop the cramping. When my calf charleyhorses it takes at least half an hour of heat massage to get it to let go. And it goes a lot now! Mostly in the early mornings in bed.

What can I do - anyone have experience?? I've been watchdogging my diet, I drink abut 100oz. of water a day, I take vitamins, I do my stretches (periformis and heel down/toe up stretches - all like I've been taught).

The NS wants another back x-ray, told me to take ibuprofen and to continue all the above (water,diet,stretches). But there has been no change in my back pain. I don't think it's a problem with my back - more like it's a problem with the nerve damage left from the surgery.

Has anyone ever gained back sensation after a year of numbness?

Has anyone ever had to deal with these Charleyhorses?

Who has had paralysis?

Please, any advice is VERY welcome. I go back to the NS mid-Aug., it was to evaluate me for hardware removal, but now it's also for this.

p.s. One lucky thing - the cramps are tight and severe, but I only feel the tension they create. They are painless - probably because they are in the numb muscles.


  • Hi Salz! Sorry you're having such problems w/ your charliehorses...I can relate. I had my PLIF 1.5 yrs ago & tho I'm fused, my rt leg is totally "shot"--numb, tingling (weird combo) & more/less "dead" except for the terrible cramps, exactly as you describe & often, also, in the early AM after sleeping (or trying to). I have done the same thing you do: massage, PT, heat, H20, WALKING, stretching, blah blah blah..but as I compare my R w/ my L leg, it is certainly atrophied-looking & my NS has confirmed that it is indeed a result of the nerve root compression @ L/4-5 from all my priors & the fusion. IOW, no "cure"...just "live with it" he said.
    I have "waited" now for over 1.5 yrs for any normalcy to return to that leg...not gonna happen, I guess. The worst cramp I had last week was while driving...oh man!! I had mega-pain, the leg siezed up & I had all I could do to lift it off the accelerator to the brake & pull over....It was really really scary & I was glad it was just a little county road, not the freeway...

    When you get your charlies, does anything "set them off"? Mine seem to be capricious...altho if I am cold, or the weather is, they seem to be more frequent. Are yours related to any outside influcnece? BTW: I always had trouble my r/leg & the fusion seems to have increased the numbness. Did you get ANY relief from that after your PLIF? I can sort of move my big toe, but also like you, can't move the little one...what's up w/ that one?!

    And my foot/leg is always ice-cold. Do you have skin-temp problems also?

    I also have considered having my hardware out...but as you say, this is a different issue...

    Thanks for the post! Others may stumble by..:)


  • There is a study of someone who regained feeling 25 years after first losing it. Obviously this is not common, but it does provide hope for those of us with some residual numbness/nerve damage.

    I had surgery 19 months ago. My feet were numb at the time and the degree of numbness has changed a number of times since then. I'm not sure how much more feeling I have (I was not TOTALLY numb)but it is different and is changing. As a matter of fact, I had some facet joint injections last Tuesday and it has changed the location of my nerve pain. This was the first time this particular area was injected...and I had been told by both my surgeons to just learn to live with it and get a SCS implanted. I wasn't about to do that and have continued looking for answers...and now I have something new to pursue!

    I have some cramps in my feet where the middle toes draw up and curl under and that has started recently. Luckily I have never had any other cramps through this whole process, so I can't answer any of your questions in that regard. Sounds like you're doing all the "right" things to prevent cramps....sorry I don't have anything further to suggest for you to try.

    Hang in there, and keep working toward recovery.
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  • Thanks for the comments!

    Gwennie - I didn't realize you too have had numbness and cramps. It's really not fun. Intersting that you've had some changes in levels of numbness - wonder what it means for your future?

    Lakeside - I know that if I bend my knee and push back with my leg - the hamstring will cramp. If I rub the bottom of my foot, the toes will cramp. If I point my toes the calf does it.

    I had a lot of temperature weirdness the few months post surgery, but I've not noticed them for a while now. My right leg was always very very hot - I even tracked it with a skin temp reader for a while.

    I had not thought about driving!! It's my right foot - it's a very scary thought to have my driving ability taken away from me if things get too bad - well, I guess they do have vehicle modifications that allow you to accelerate with your hands though. Sad to think that I would get to be that bad off.

    I worry so much that they are just going to get worse - as in never stop, never relax. What do you do? What can be done? It's so hard to believe that there is no cure - maybe some stem cell thing will come up and we can volunteer to see if nerves can be reconnected.

    Oh - before surgery I had left leg pain down to my toes and caudal equina (sp???). Post surgery - teh left leg was fine, have not had a single bladder issue since, but the right leg went gradually numb in the first 24 hours post-op. Had second surgery to 'explore', I believe I was hemoraghing (sp?) -probably from my convulsive upchucking, and also we think there were some BMP issues inside the spinal canal.
  • Do I ever have empathy for you! I've had horrible early morning leg cramps for many years and just a few days ago was told by my surgeon's PA that they can be caused by lumbar spinal stenosis. I started a topic called Killer Leg Cramps (http://www.spine-health.com/forum/conditions-not-covered-other-topics/killer-leg-cramps) which you may find helpful.

    I'm presently on 800 mg of ibuprofen every 8 hrs for a couple of weeks and it does seem to be helping, although I'm still getting cramps. A while back a friend suggested I might need additional magnesium in my diet and was pleasantly surprised at how much that helped. If your cramps are caused by a physical condition related to your back the magnesium won't cure that, of course, but you never know, it might help.

    Hope you can get resolution to your charleyhorses! :)

    2009 Foraminotomy C6-72010 PLIF L4-S1Multi RFA's, cervical inj, lumbar injLaminectomy L3-4 and fusion w/internal fixation T10-L4 July 17Fusion C2-C5 yet to be scheduled
  • My leg/foot cramps are due to lack of blood supply to my spinal nerve roots(google neuroclaudication or pseudoclaudication.) For me, this is permanent.

    BMP-if you have read any of my posts in surgery, I can rant and rave for hours about the evils of BMP(except in rare cases.) I had BMP cause bone to grow on my spinal nerve roots and cause a complete boney tunnel compressing the nerves. My leg pain came back about 5 weeks postop and it was from BMP overgrowth.(and the stuff didn't even make me fuse.)

    I also have arachnoiditis-big clump of scar tissue, nerve, veins, in my spinal canal.

    I've had my hardware out except for the cages. If your surgeon takes out the hardware, he should be able to visualize everything to see if any extra bone growth or scar tissue is what I've been told. MRI and CT can be hard to read with the titanium in there and direct visualization in surgery is sometimes the only way to see what's going on.

    Please post an update, would like to hear what your surgeon has to say. Good luck!
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  • Inchworm - for SURE - I'll hop over to your Killer Leg Cramps post and check it out! I'll double check my magnesium and make sure on it too.

    Ernurse - I've read your BMP post - I totally agree with you! Luckily my NS took all the BMP out of the spinal canal in that second surgery. He did leave the 'BMP bullets' that were outside the canal alone, luckily it looks like I've fused perfectly. I can't imagine if he'd just waved off the numbness and left the BMP bullets that were inside. Of course the bleeding probably wasn't so good in there either.

    Question for you ER - do you have numbness from the lack of blood supply? Is the blood supply still restricted there, or was it a temporary blockage?

    I wonder if I might have had a temporary restriction of blood supply, what with all the bleeding I did post-op - maybe? I'm off to google those terms!

  • Oh yes, I know all about this predicament. I get painful muscle spasms anywhere from my foot all the way up to the lower back. The worst is the spasming charlie horse style in the calves and the bottom of the foot. How many times have I hollered and cried?! At times my feet will hurt like someone took a sledgehammer to the top of them or the ankles. Other times it's like I stepped in a pile of fire ants and they run up the leg. I also get cutting, burning, and scearing pains.

    Sorry if I was too vivid. I manage my back and leg pain with my meds listed below and I use ice and heat. I like ice on my back to numb things up and prefer heat for loosening up muscle spasms. My husband noticed that my right leg which has permanent nerve damage, is smaller than the other. It is also very weak and it's hard to raise my big toe. There's been times when the leg has given out on me and I went tumbling down. Not a great idea at all. I also have post op scar tissue growing on the nerve root of L5-S1 and up against the thecal sac at L4-5 and it adds to my nerve pain on my left leg.

    My surgeon says nothing can fix it or strengthen it because of the damage on the S1 nerve. It's something else I must learn to live with and I use a cane all the time. I was also told the damage came from it being compressed for too long.

    Well, this is all I know. ERNurse's explanation makes a lot of sense too and it might be what happened with me, who knows? I hope you find the answers you seek and relief from all your pain. Take care

  • Meydey - Yikes!!

    It sounds so final and so severe and so AWFUL!

    How long have you had to deal with this? When were your surgeries?

    It makes me doubly grateful that I can't really feel my cramps, just the tight tight tight of the spasm and then for days all the muscles in the leg ache. Lately I've not had any days off - the spasms are coming too often to have a recovery period.
  • i have suffered from leg cramps for 40 years. my damage was permanent. however in that 40 years of struggling i have developed an approach and a few theories that may help you.
    1. keep trying to strengthen the leg by doing stretching and isometric exercises. if the muscle thats giving you trouble is acting up then work on other muscles in that leg that feel better. i have read that when adjacent muscles are strengthened it can help the weaker muscle.
    2. if you have permenent damage you still want to keep strengthening to avoid further atrophy.
    3. believe it or not i feel that cramps are a good sign. I feel that it shows a certain amount of strength im the muscle. i've had limp muscles that didnt cramp. those muscles were just about dead. if youre getting cramps endure the discomfort and keep building them up. in those 40 years i've been able to keep the legs somewhat muscular. it's just the pain now that's stopping me....

  • It's been 2 1/2 years since I've had nerve pain. I had a microdiscectomy in 2007 and my fusion was June 2008. Cymbalta has helped control some of the nerve pain and muscle spasms along with the Zanaflex of course. I'm allowed up to 2 4mg tablets of my muscle relaxer every 8 hours and I believe it is the maximum dose allowed for Zanaflex.
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