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still difficulty walking after ACDF for compressed spinal cord

barbararoberts47bbarbararoberts47 Posts: 11
edited 11/04/2012 - 12:51 AM in Back Surgery and Neck Surgery
Since the beginning of the year I'd had increasing weakness in my legs and left arm, muscle spasms, and stiffness. I had severe pain in my back between my shoulder blades and eventually pain in my neck. After several MRIs and 3 different doctors it was diagnosed that the disk between C5-6 was bulging and pressing against my spinal cord. By this time I had extreme loss of balance and muscle weakness in my legs and left arm and was using a cane to walk. I had several falls which damaged my knees. I had ACDF surgery on Aug 27. I was in the surgical hospital 2 days and then transferred to a rehab hospital for 8 days where I received physical and occupational therapy. I used a walker since the surgeon stressed I needed no more falls until my neck was fused. I was in a soft collar for about 3 weeks. I had been told before surgery that there were no guarantees about how much strength and movement I would get back but that the surgery was needed before my spinal cord ended up further damaged. Now, over 2 months after surgery, I have made little progress and have actually lost more strength. My right arm/hand is now affected and almost as weak as the left. I use a walker at work and out of the house, a cane inside. I have major stiffness in my legs and pain and weakness throughout my back. My employers have let me take it easy at work but I am completely wiped out when I get home. I have great difficulty getting in and out of my car. I have to be very careful where I sit because I will be unable to get back up. I have intermittant incontinence as I did before the surgery. I go to physical therapy 1 to 2 times a week, they want me to come 3 times but I am wiped out trying to get there after work and have no one to drive me. The therapists are very encouraging and tell me to be patient but so far I see no progress. At home I try to move around as much as possible but it saps every ounce of strength I have to to shower and dress and cook a meal and do a little laundry. I can't do my own hair. Many days I can't put on my own socks and shoes and have trouble buttoning my clothes. Now all of a sudden I am having trouble using/holding my toothbrush or a fork or spoon. X-rays show everything looks good in my neck. The bones aren't fused but are fusing. But nobody can seem to answer my questions about is all this normal for this period of time or why I'm experiencing sudden weakness and uncoordination in my right arm. I must admit I am a little scared. I am 47 and there are so many things I want to do but as the days go by I find myself more exhausted and able to do less and less.
Barbara Roberts


  • jellyhalljjellyhall Posts: 4,372
    edited 11/04/2012 - 3:06 AM

    I haven't experience cervical surgery yet.
    I have a two level ACDF tomorrow!

    I thought I would share what my surgeon has told me, in the hope that it will encourage you.
    He has said that he can't predict whether I will get relief from my symptoms or not, but the surgery is done to get the compression off the cord. He said that he would expect 70% of his patients to get some sort of relief of their symptoms. He also said that we won't know what relief I will get until 6-12 months after the surgery. So you can see there is still plenty of time for things to improve for you. I hope they do. :-)

  • Like you, I had a spinal compression that caused major leg weakness and bowel and bladder issues. My problems were in the lumbar region caused by an epidural abscess. If you are cleared by your PT to walk, then you need to start walking, pure and simple. To start, use a treadmill so you can hold on to something. When I was released from PT, I walked outside using a 4 wheel walker. I did this many months until I built up enough strength in my legs to walk without any aides. Walking gave me back my life. I was 57 when all this happened. It took me almost 2 years to recover. Don't give up, please.

    Emergency surgery in March of 2006 for spinal infection of L 2 and L 3. During surgery, discovered I had Cauda Equina Syndrome. Spine became unstable after surgery and had 360 fusion with 10 pedicle screws, plates and rods in April of 2007.
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  • Thank you for the words of encouragement. My surgeon told me there were no guarantees either but the surgery was necessary to get the compression off the spinal cord to prevent further damage or even paralysis. I also have bladder issues, some days much worse than others. I walk in the long hallways at work (a school) and on good days across campus. Before surgery I used a cane, now I have to use a walker. My balance problems are worse than ever. The doctors either can't or won't explain why my right arm has weakened severely SINCE the surgery. The overwhelming fatigue is awful and the feeling of being sick. I'm staggering when I get home at 3 and sometimes can't get out of the car without help. The days I have to go to physical therapy are bad. Instead of my stamina and strength gradually increasing they seem to be decreasing, don't understand that. I felt very hopeful the first few weeks after surgery but gradually have become more worried as I see not only lack of progress but a worsening of my symptoms.
    Barbara Roberts
  • I can understand how discouraged you must feel.
    Although it is explained to us before surgery that there is a risk that we won't get relief of our symptoms, or could even get worse, we do really hope that we will improve.

    Now, I am not a doctor, but I have read a lot about spinal problems. I wonder if you have had some damage to your C5 nerve. Do a search for C5 palsy (arm drop), and then perhaps ask your doctors about that. Your problems may be nothing to do with that, and the doctors may not know why you are having increased problems, but I would research and have a list of questions to ask your doctor/surgeon next time they see you. I would also ask about the posibility of scar tissue now compressing a nerve.


    That is a link to a Spine Health thread on this.

    I really hope that you will notice some improvement soon. I also hope that your doctor will be able to give you some information on what might be causing your various problems. I think it is worse to not know what it is, even if the news is bad news.
    I also work in a school in the UK.

    Take care,

  • When the spinal infection hit me in Feb. of 2006 I was a high school principal. I went back to work a few months later wearing one of those hard turtle shell braces and using a walker. I was always exhausted and in pain. I managed to hang on until I had my spinal fusion to stabilize my spine. This was in April of 2007. I retired that June never returning to work. Being retired made it a lot easier for me to go to PT and to later, start my walking regime. I remember how hard it was to work full time and go to PT sessions 3 times a week. I feel your pain and exhaustion.

    Emergency surgery in March of 2006 for spinal infection of L 2 and L 3. During surgery, discovered I had Cauda Equina Syndrome. Spine became unstable after surgery and had 360 fusion with 10 pedicle screws, plates and rods in April of 2007.
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  • Another miserable night. Have been unable to reach my neurosurgeon the past couple of days, he's out of town. Extreme weakness continuing, incontinence, hips and legs throbbing and aching, knees swelled and painful, rest of legs swelled as is ankles and feet. Been like this for well over a week now. Nothing budges it, take blood pressure/fluid pills. Elevate feet but can't stay that way long on my back. Left leg starts spasming in hip and goes down leg tightening and locking knee, does this every time I lie down a while. Trying to get ready to go to work and exhausted but used all sick days at time of surgery. Fingers won't work and keep dropping thngs, can't zip/button pants. And if one more person asks me at work when will I be able to run a race ha ha, I am afraid I'll break down and have some kind of screaming fit.
    Barbara Roberts

  • I have now got home from my neck fusion, and just seen your post.

    I feel concerned about you having incontinence, and all the other symptoms.
    Incontinence can be a red flag symptom that needs dealing with immediately.
    Please call a medical person, go to ER if necessary, but let someone know about that for them to decide if it is a sign of Cauda Equina or not.

    Feel better soon xx
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