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Cervical myelopathy, symptoms worse after surgery

barbararoberts47bbarbararoberts47 Posts: 11
edited 11/20/2012 - 3:36 AM in Recovering from Surgery
I had ACDF surgery on C5-6 in late Aug. The disk had been bulging and pressing against my spinal cord. I had severe muscle weakness in legs and arms/hands, more on the left side. Muscle cramps and spasms. Loss of balance. I had to use a cane to walk. Incontinence. Great difficulty getting up from a seated position. I had several falls which injured my knees. The surgeon said he couldn't guarantee complete recovery after the surgery but he felt I would see a lot of improvement. At first, after the surgery, I did think I was getting stronger. Was in a rehabilitation hospital for a week and they had me use a walker for safety to prevent falls while my neck was healing. At home I used a cane and in other places I felt safe. I returned to work early, I had no choice since I had very few sick days to use. The past month I have noticed increased weakness in my hands, my right side is now almost as weak as the left. My balance is still not good and my feet are dragging again. I'm using the walker all the time now. About a week ago I started being unable to pull myself out of the car when getting home from work. It's like my body reaches a certain point where the muscles just stop working. I am waiting on an appointment with the surgeon Dec. 18. I have told them about my worsening symptoms but was told they'd put me on a waiting list for an earlier appointment. I'm scared and worried. I can't afford to lose my job that I love so much. I have a new grandson that I cannot pick up. I was always the caregiver in the family and now there is no one left to take care of me. I don't want to be this way. There are so many things I want to do.
Barbara Roberts


  • When it comes to nerve damage things tend to get worse before they get better. Depending on the severity of the pinch in your spine things could be acting up due to a sudden removal of the pressure. Now your spinal chord is acting up because it is expanding and trying to heal. At first things likely felt better due to the swelling from the surgery. Now that the swelling is going down your spine is getting much needed room an is "acting up" of sorts. That is how it was explainedx to me by my Neuro Surgeon after my ACDF C4/5-C5/6. However, I am having to have a follow up surgery due to worsening symptoms for me due to having spinal stenosis. So you are in a different situation from mine. I wish you the best through your healing process. Just take it as easy as you can, your body went through a lot and it takes time to heal. I am only 28 so i "bounced back" fairly quickly, but then I tried to overdo it and was in pain for 2 weeks of the most excutiating level I could imagine. I am not allowed to just have downtime because of my job (active duty military) so I feel your pain on wanting/needing to work.
  • I had 5 level PCLF surgery in May. I've had similar experience with neuro problems returning after a month or so, trouble walking, burning and weaknes in arms. They continue as well as really bad pain in the shoulder area in I stand or walk for more than an hour. Getting groceries lays me out for the rest of the day and maybe into the next day. The pain is so bad I grit my teeth to keep from crying.
    I saw my surgeon yesterday and he was no help. Suggested physical therapy but I'm already doing that, just finishing up my 25 visits. Then referred me to a neurologist. BPreachers' comments were very helpful. After 6 months of this, I'm very frustrated and depressed. Wish I'd know this before the surgery.
  • I still am not any better. Haven't been able to see the surgeon yet. Early this morning I fell coming back from the bathroom. Took a step and it was like the floor wasn't there and just went down on the floor in a sitting position. Had no strength to pull myself up, legs stiffened and feet curled under. My 14 year old heard me and called my sister. They couldn't get me up, I am a big tall woman, and called the ambulance. They finally got me up by sliding a sheet under me and lifting me. Did not go to their hospital because know they wouldn't treat, keep telling me contact my surgeon who is in another city. Missing another day of work without pay. Scared of another fall. Can't get anything but recordings when I call the surgeon's office. Need answers so bad. Everybody watching and waiting for me to get better but getting worse. Feel lost and scared and very alone.
    Barbara Roberts

  • I think you need to speak to your surgeon. This weakness and falling needs to be examined and the surgeon should decide if it can wait until 18th December or not.

    Are you leaving a message on the surgeon's answerphone machine?
    Could you phone the hospital where you had the surgery? I know that it is quite a long time since you had surgery, but they probably have access to speak to the surgeon because they have recent patients of his there. Perhaps if they know that you are unable to get a response from him, they will call him for you and tell him of your problems.

    I'm sure that if he knew what is going on with you, and felt it could wait until your appointment with him, that would reassure you.

    You are not alone, apart from your family, you have us here to support you. I do hope that you manage to speak to the surgeon, or that he will be told what you are experiencing and will leave a reassuring message for you.

    I understand the pain of not being able to pick up a grandchild. I have experineced that, first with my lumbar problems. They improved and I could pick up my granddaughter. Now I am 3 weeks after a 2 leve ACDF and can't pick up my grandson. I am very hopeful that I will be able to again soon. Luckily, he is only little for his 13 months age!

    Take care,
  • Had another fall a couple days ago. Got up in the night to go to the bathroom, coming back to bed with plenty of things to hold onto and apparently just slid down the side of the bed and ended up between the bed and dresser. No hope of getting myself up..too heavy, knees messed up, legs spasming and stiffening and feet curled into claws. Finally got my 14 year old to hear me and he calls my sister, they can't get me up. Called paramedics and they lifted me up in a sheet. I did not want to go to their small hospital, knew from before I wouldn't be treated. Started calling surgeon's office, just get recording. Get a call back 4 hours later and she cheerily tells me on on waiting list for cancellations. Doesn't care that I fell or that I'm still getting weaker. Today I called my family doctor and told the nurse about my problems and that so far I wasn't able to speak to my surgeon or get in to see him. Tomorrow I'm getting my sister to call and badger them. Maybe if one of us keeps calling we'll get some kind of result. I am scared this is irreversible and that one day I will wake up unable to walk at all or be injured bad in a fall. All my freedom is slowly disappearing. I can barely get myself clean, dressed, and to work. When I get there I can barely pull myself out of the car. I know my co-workers pity me, I see it on their faces. I am far from the energetic, hard worker I once was. I don't understand what is happening to me. How can my body just shut down like this and forget how to do so many things?
    Barbara Roberts
  • I hope that someone will get back to you soon, be that your surgeon or your family doctor. Just knowing that a medical person has listened to what you are experiencing will be reassuring for you.

    Hoping that things will improve soon, and that you will have hope restored for an improvement in your symptoms.
    Take care and know that there are people here who care and understand xxx
  • So now they are saying I have a motor neuron disease, most probably ALS. I feel like I've been given a death sentence. Instead of my nerves healing, everything is dying.
    Barbara Roberts

  • I am so sorry to read your post.
    I assume that they have given you that diagnosis after various tests that confirm this.
    Have you had an opportunity to ask questions?
    I suggest that you write a list of questions (even if you have been able to ask some, there are bound to be more that you think of) and next appointment ask them. If you can, take someone else with you to the appointment. Two pairs of ears are better, and hear more, than one pair.
    Keep posting here Barbara. We will listen and support you through this.

    I will be praying for you. :-) xxx

  • It seems that you are living the spine patient's nightmare. I can't do anything except pray for you and yours, so that's what I'll be doing.

    Wishing you brighter days.

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