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Yippee toes move after 2 years with surgery

juliejjulie Posts: 213
Success comes in all increments and for me it was in seeing my toes being able to move immediately after leg nerve decompression surgery on friday after over 2 years.
Short history - I had four L5-S1 back surgeries, including fusion and scar tissue removal, in 11 months. the latest one being January 2008. Ever since the first surgery which was a Lami/disk, I woke up with numbness and severe pain in my left foot. I had numbness that took my bladder and bowel sensation too. Each subsequent surgery increased the numbness and the pain in my foot. For two whole years I have been confined to my home trying to deal with chronic pain and a foot that didn't work. My toes just lost function and yet held so much pain. My ankle gave little support and I had some dropped foot.
I had heard about a surgery that decompressed nerves in the ankle and legs and it was not just cutting. They had a test that confirmed the location in my leg, just below the knee, that I knew before they pointed to it where the compression was. Friday, I had surgery and before I could remember anything, the nurses later told me the two doctors were celebrating the movement of my toes up and down and my ankle rotated like my right foot and they touched my foot and I told them it tickled. Two years these toes have not moved and now my brain keeps moving them to make sure they will continue to.
We don't know if the numbing or the pain will diminish, but to have motion in my toes is so wonderful. They save a lot of feet of patients who have diabetes, and he said my nerve looked like I am pre-diabetic.
Now I must walk in a pool to slowly gain strength for the muscles that I have lost in the last years. I hope the pain and numbing will go away as I get stronger. I have a chance to reclaim some of my life if this happens. Something I would wish for everyone on here.
I also have had trouble swallowing since my first surgery and I was a problem for them to intubate me. My vocal chords are covered in something they couldn't identify and now I have to go see an ENT doctor to investigate what is growing in my throat. Thank goodness she persisted and did get the tube in me so I could have the surgery. I drove 6 hours for these doctors.
Happy to report success!!


  • Hi Julie, I am so glad that after 2 years, you have found a solution to your problem. It is the people who keeping searching will find an answer. This is wonderful. Thanks for sharing with all of us. I am a diabetic and always wonder about this. I bet you will treaure this success.

    All the best to your PT.

  • Yay!!! You must be feeling such a huge sense of hope and optimism, a terrific feeling for you to share with us. These nerves issues suck, don't they?
  • for sharing in my mini celebration. My doctor keeps insisting I am diabetic since he has developed this surgery to help diabetics feet and their pain. I told him I was tested and no I am not. He said get tested again because that nerve looked just like a diabetics nerve. Now I hope for the pain and the numbing to subside since I finally got movement. And you are so right.....I keep searching. Thank you again for commenting.
  • These nerve issues go beyond "suck" but I don't have a word yet that fits. lol
    Thank you for taking the time to see how important an improvement this was to me and then writing. These responses really help me stay positive especially in the recovery period which has been going on for what seems like forever.
  • Cheers! What wonderful news. I am really thrilled for you.

    When you have time, please write about your surgery to remove scar tissue and what the outcome was.
  • Thank you for being happy for me. I have celebrated so many peoples' success and always kept hoping for something great to happen to me so I could have others celebrate with me. This is a start and I will be celebrating more when the numbing and pain leave.
    As far as the scar tissue removal goes, it was made possible only by certain things falling into place that showed my surgeon I needed this chance.
    My third surgery was my fusion and the inability to move in my brace made my hip feel like I was losing motion. I had Osteopathic manipulation during the entire months that followed and when he worked at my hip there always seemed to be pulling deep inside and I felt like several nerves were not where they should be, because they hurt so much and wouldn't move like the other hip.
    My surgeon was the one who had gone in all three times and even though my foot issues started after the first surgery I never felt a need to blame or flee to someone else. So he ordered an MRI and because of not clear results, a Myelogram and CT scan followed. I had never had one before and I kept asking the Radiologist if he could see S1 and below. His answer was not typically this area was looked at. I guess I asked so much during the procedure, as no calming medication was offered, that he specifically told the technologist to look there and afterwards told me I had done a good job of having him look at S1 where he suspected a fragment of bone or soft tissue was lodged. My surgeon was able to use this as justification, I think, to agree to the fourth surgery.
    When he entered my back, he said no fragment was found but L5 and S1 nerve roots were so badly scarred down and in a totally wrong position that no way would these have freed themselves no matter what I did. I develop more than my share of scar tissue so he had a lot to remove from the 3 other surgeries. When I stood up for the first time after that surgery I had lost the ability to walk. (My left side had taken one too many hits or so it thought.) My surgeon grabbed a walker and said let's go and reconnect your brain to your foot and learn to walk again. And we did even though my left foot would drag. (this was so embarrassing) I left with only a cane because I felt way too young to have a walker!
    Immediately though I knew this surgery had helped, because all the low back and hip pain was gone and I no longer had this horrible pulling feeling. I was able to have PT that kept my hip mobile and this time it didn't scar incorrectly. Unfortunately my foot pain and numbing remained untouched, but my back and hip are better than I ever expected would be possible. My surgeon suggested that if he hadn't been the one to do the original three surgeries, I would not find another honorable surgeon to go into me this fourth time just because of further possible damage. I also know the Radiologist would not have looked that deeply had I not bugged him so much.
    Sorry it is so long, but all the pieces made the surgery possible. Nothing miraculous was done yet everyone did their part to make this happen. Most importantly is, that I know God was at the head of it all.
    Thanks again for the support,
  • Thank you for sharing your success story! It makes all of us feel hopeful and happy for you.
  • I love your woohoo and for your happiness for me. I just know that none of us can give up and by doing so we push our doctors to look farther, harder, and deeper and that is what will help heal all of us one day.

  • Congrats Julie,

    Hi Julie I am so happy for you. I pray that you have continued healing.

  • Thank you so much for the prayers for continued healing. My doctor uncovered the dressing and one cut is over 2 inches and the other is at least 5 inches and looks pretty gross right now. I hope I lose the pain next and then the numbing. I would love to reduce the medications which would help me lose the weight. I know one thing at a time.
    Hugs Kate and thanks for taking time to look me up.
  • I am so happy to hear about you moving your toes. What a great relief. So he thinks you have diabetes huh? Are you recovering well? How is your pain level? I'll pray that it gets better and better as each day goes.
  • Yes he is absolutely sure by the color of the nerve I have diabetes but the test don't prove he is correct. My foot pain level is up and he expected that saying the nerves need to grow from the cut down into the foot which will take time. Thanks for taking to time to write and pray. I should be so happy that I got my toes to move and yet I still have the pain (more at the moment) and numbing.
    Thanks again,
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