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Right foot burning + swelling after L5 S1 fusion 3 weeks post-op

My wife recently had L5-S1 spinal surgery to treat her lumbar spinal
stenosis. She had both ALIF and PLIF. She also needed a second spinal
surgery immediately (after 3 hours) following the fusion surgery because
she lost all sensation to her right foot and CT showed there was
additional nerve compression. The surgeon decided to take off the bone
which was causing the additional nerve compression. Afterwards she
recovered fine but had no sensations in her right foot. 

Three
weeks after surgery she started getting these extreme neuropathic pain
in her right leg and fingers. This was followed by heavy swelling of her
right foot. We went to the ER and the orthopedic surgeon said that this
was nerve regeneration. We had a follow-up appointment with her surgeon
who also said this was nerve regeneration and while they understand
this is extremely painful, there's not much they can do about except
give her painkillers to manage the pain. He also did an X-ray and a CT
of her back and confirmed the rods and screw are in their proper place
and nothing has moved. 

The surgeon strongly suspects this is the nerve coming out from L5 which is severely irritated and causing the foot pain. I suspect and her family doctor agrees that the L5 nerve root is probably inflamed. We read in different forums that the fusion process takes 8-12 weeks to
set and there will be big changes to the body after 8 weeks and this
nerve pain may simply disappear. Currently she's on Pregabalin,
Nortriptyline, Hydromorphone, and a custom compound cream (6%
Pentoxifylline, 10% Ketmine, 2% Clonidine, and 6% DMSO in Lipoderm) to
help manage her pain. She has also been prescribed Furosemide to help reduce the swelling. A combination of these drugs, magnesium
supplements, and ice water bath is keeping her pain manageable. She
can't lie down as it triggers pain in her lower back and foot burning,
so has been sleeping on the couch for the past 3 weeks. 

I
wanted to share our recovery experience on this forum to see if others
have faced or are facing similar difficulties and would be willing to
share their recovery stories.
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Comments

  • hvillshhvills Suzhou, ChinaPosts: 809

    It happens.... 

    Horrible nerve pain like your wife's after fusion surgery due to the inflammation and recovery of the crushed nerves happens.  Sometimes people wake-up from surgery with zero nerve pain and other times people wake-up with all the pre surgery nerve pain and more... there is really no predicting it.  Doing what you're doing with the pain meds is about all you can do until the nerves calm down.  In my case I woke-up from my first fusion surgery with zero nerve pain and on my second fusion surgery I woke-up with ALL the pre-surgery nerve pain and more.  It took four long months of suffering and pain meds before the nerves calmed down and the pain subsided.  I understand what your wife is going through... and I feel for her... tell her to hang-in there... things will get better.

  • nmnhuqnnmnhuq Vancouver, BCPosts: 4
    I might sound a bit naive but information helps. If there is no longer any pressure on the nerve root (checked via CT) why did it take 3 weeks for the nerve to get inflamed? Or was the nerve given some type of a strong steroid during the two surgeries and the effects of that have finally worn off and so my wife is now feeling the pain? Is it reasonable to assume that some form of relief is expected roughly 12 weeks post-op when the spinal fusion sets in? Thank you all for taking the time to read this. 
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  • hvillshhvills Suzhou, ChinaPosts: 809

    There is really no way to predict...

    I can't really say why your wife's nerve pain was "delayed" 3 weeks... it could be the surgeon included some type steroid injections during the surgery... I don't know.    Nerve recovery and healing happens VERY slowly and is different for every patient.  There is really no way you or your doctor can predict how long it will take for your wife to feel relief from her nerve pain... it could be 3 weeks, 3 months, or longer.  The fusion process is a bit more predictable but can take up to 12 months or more in some patients so don't take the 12 weeks as fixed time.  X-rays at 12 weeks should be able to tell you and your doctor the progress of her fusion. When the fusion begins to set this will help take some pressure off of your wife's back muscles so this will bring her some relief and improved mobility... but not necessarily relief from nerve pain.       

  • SavageSavage United StatesPosts: 4,299
    edited 07/23/2019 - 1:08 PM
    hello nmnhuq! and welcome!
    https://forum.veritashealth.com/welcome
    please click on link for helpful information!

  • nmnhuqnnmnhuq Vancouver, BCPosts: 4
    It's been several weeks since I created this thread and it's a good time as any for an update. Hopefully others will find our experience informative.

    My wife had been pretty much living in our armchair for 3 weeks straight and was getting 2-3 hours sleep total every day. Lying down on the bed severely agitated her back and this caused further foot pain and swelling. By the end her right foot was like an ugly red balloon.

    The pain and the swelling in my wife's right foot got so bad that I had to rush her once again to the ER. The ER doctor first tried IV hydromorphone and then pure morphine but nothing could control her neuropathic pain. Finally they tried IV ketamine which thank God turned out to be the only drug that successfully managed the pain. At this point the ER doctor called in the spine resident who after seeing  my wife's pain could only be managed with ketamine consulted with the on-call spine surgeon and immediately hospitalized her. The ER had also done an ultra sound of my wife's right leg and determined that there was no blood clots. Her surgeon had previously done an X-ray and a CT scan of her back and confirmed her surgery hardware was fine.

    The ketamine infusion was continued for 7 days straight and she was also administered a course of oral steroids: dexamethasone. Her surgeon brought onboard a spine anesthesiologist to help with pain management and root cause diagnosis. The pain specialist's initial reaction was this looks like both CRPS and nerve traction injury. The 3 weeks delay before pain started was what was giving hope to her surgeon and the pain specialist that this was not full blown CRPS, but the swollen foot was definitely worrisome. So they decided not to take any risks and treat this as if it was CRPS. Luckily the dexamethasone and ketamine infusion started working wonders on my wife's foot after 5 days, and it went back to almost normal by the end of the week. They had attempted to take her off ketamine on the 3rd day but the combination of different drugs being administered and the ketamine caused her to have a serious anxiety and panic attack (not a fun night). Ultimately after 7 days she had recovered to the point her right foot was now almost back to normal shape. After observing this development the pain specialist informed us that this case has a very low probability of being CRPS and is most likely nerve traction injury.

    Even though she was recovering well, as added insurance before releasing her from the hospital, they decided to do nerve blocks on L5 and S1. My wife thinks the nerve blocks didn't work but none the less her foot was already healing and we were glad to leave the hospital and come back home on the 9th day :) It's now been over a week she's home and her foot is back to normal, no swelling and visible veins. The medicine course prescribed includes nortriptyline (30mg before sleep), 150 mg pregabalin (3 times a day), hydromorphone (up to 6mg as needed), and acetaminophen (tylenol as needed). The pain specialist called my wife today and after getting a full history of how her leg is looking and doing since her release from the hospital, he told us that he can confidently confirm that this is not CRPS and is instead a nerve traction injury. The root cause is nerve root injury in the back during the L5-S1 fusion. The areas of the foot affected (confirmed from a dermatome map - Google it!) are caused by injury to the L5 nerve root. No nerve damage in the foot either. This type of injury is not as uncommon as we first thought and the body heals itself over time.

    We went to the ER with a 9/10 pain and today her pain has dropped to 1/10 or less :) The doctors think that the nerve injury will completely heal itself within the next 2-3 months and they are no longer worried. In the meantime my wife has been asked to go to the physio to strengthen her right foot. She's also back to walking around normally (though not for extended periods of time). The nerve drugs make her drowsy and she sleeps quite a lot, which is a good thing as sleep helps nerves regenerate and she barely slept a wink for three weeks. The pain specialist has adjusted her medicine dosages and plans on weaning her off of some of the medication in the next few weeks. She has follow-up appointments with her surgeon and the pain specialist in 4 weeks time. The pain specialist also said he doesn't expect flare ups like the ones we experienced previously will happen. As the spinal fusion process starts after 8 weeks, a lot of these post-surgical problems experienced tend to correct themselves automatically.

    This has been quite a mental and physical ordeal for us. I wanted to share our experiences in the hope that someone else going through similar situations will find heart from our experiences. Please pray for a quick recovery for my wife. I'll update again in a few weeks time with the latest news. Thanks! 
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  • hvillshhvills Suzhou, ChinaPosts: 809

    Hey NH...

    That's quite a story and a rough couple of weeks... it's good to hear your wife has gotten the right treatment and is on a positive healing trend.  I also had to be readmitted at about the 3-4 week post-op level after my second fusion surgery for extreme nerve pain.  Like your wife it was nearly 7 days of agony and dispare as the doctors tried various treatments and drugs to try and get things under control.  

    Can you further explain the meaning of  "nerve traction injury"...  I've not heard of this term before.  Are you saying the nerve root was injured after/during the surgery... or is this just another way of saying the nerve root was cushed and compressed prior to surgery due to her damaged spine??? 

    Once again... it's good to hear your wife is progressing well.

  • nmnhuqnnmnhuq Vancouver, BCPosts: 4

    hvills said:

    Hey NH...

    That's quite a story and a rough couple of weeks... it's good to hear your wife has gotten the right treatment and is on a positive healing trend.  I also had to be readmitted at about the 3-4 week post-op level after my second fusion surgery for extreme nerve pain.  Like your wife it was nearly 7 days of agony and dispare as the doctors tried various treatments and drugs to try and get things under control.  

    Can you further explain the meaning of  "nerve traction injury"...  I've not heard of this term before.  Are you saying the nerve root was injured after/during the surgery... or is this just another way of saying the nerve root was cushed and compressed prior to surgery due to her damaged spine??? 

    Once again... it's good to hear your wife is progressing well.

    From my understanding and based on what we were told, nerve traction injury means the nerves got pulled beyond their tolerable levels during either ALIF or PLIF. The surgeon placed spacers between L5 and S1 vertebrae to lift it up and that is most likely the cause of the traction. Hope this helps.
  • nmnhuqnnmnhuq Vancouver, BCPosts: 4
    edited 03/06/2018 - 6:25 PM

    It's been 2+ years since I made the first post in this thread. Today I wanted to write a brief end note to provide a complete history for someone reading this thread.

    My wife's foot swelling and nerve inflammation were controlled using oral steroids and 7 days of IV ketamine in the hospital. They also did a spinal nerve block as an added precaution, but we think it didn't make much of a difference. She came back home after 9 days in the hospital and everything started becoming normal within a month or two. Unfortunately the whole experience had taken a severe toll on her both physically & mentally, and she was in rest at home for nearly a year. She couldn't sit up straight for 8 hours for the longest time, so there was no point looking for a job.

    Within a year she was back to normal (say 95%), started looking for jobs, and finally got back into the workforce. She has been back to work for little under a year now. Being in management consultancy she has a high stress job, and that stress sometimes manifests into nerve agitation and discomfort in her foot, but nothing that stops life. Those episodes too have become random and are fewer and far between. Recently in the cold weather (snow & all) she felt her left foot would become numb while the right one was fine. But that too has mostly corrected itself over time. It seems that whenever there's a lifestyle change, the nerves tend to flare up and after a while they adjust and symptoms disappear.

    We had our final consultation with her surgeon two weeks ago. He said that if these incidents are occurring at random and infrequently, then that's a positive sign her body is recovering but it may still take another year or two to be back to a 100%. We also recently went on a trip to Spain & Portugal for 13 days, and walked 174.04km or 245,921 steps... no problems :) My concluding thought is that spinal surgery is extremely demanding on the body, and my wife's recovery took much longer than the 12 weeks recovery we were originally advised. In hindsight, the 12 weeks recovery time was just a guideline. Everyone's recovery is different and happen at different paces.

  • merliny2kmmerliny2k Posts: 8
    edited 03/08/2018 - 4:31 PM

    Thank you for your words...I am sure many here will be very appreciative.  I have been trolling the site as contemplating my first ever and hopefully ONLY laminectomy / fusion for my stenosis and spondy.  This place is both very informative and also very frightening as well.  Good luck and so glad to hear a positive outcome!!

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