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SCARED my Cervical Surgery was really ALS

I had weakness, twiching, and tightness in my calf muscles. I went to my doctor and he did an MRI on my spine among other tests. The MRI showed I had significant compression of my spinal cord with damage to all c-2 through c-7 discs. Had laminoplasty cervical surgery 3 weeks ago to repair it. Initially  for a week or so it was all  good. My legs felt 90% better for a week. Now they are the same or worse, and now my hands are also failing. My left hand especially cant do tasks as my fingers kind of lock up. I think I see some atrophy on the back of my hand above my pinky finger and my thumb. I am so scared now I have ALS. I am terrified.  I had an EMG about 2 months ago that was clean, but at the time besides the twitching it was all UMN signs. And the hour I did the test I wasnt twitching. I am so scared. The only thing that I feel is stopping me from breaking down is the clean EMG a few months back. But cannot figure out how this continues to escalate in my body after surgery.

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Comments

  • I had cervical myelopathy and underwent emergency ACDF of C5-C7. Today marks week 7 post surgery and I'm also dealing with continued neurological problems. I understand why you're scared. I'm also scared and feel my surgery may have been unnecessary, but at the same time I went through the MRI and saw the compression myself so I know my mind is playing the anxiety game.


    Remember that cervical cord compression is to preserve your level of functionality at the time of surgery. You may never recover from the damage already done. Or you will and it might take time. Nobody knows because everyone is different.


    I think an EMG is THE test  for ALS so if it came back clean, there should be huge doubt in your mind that ALS is your problem. I had the same fear as you trust me - I even have the "bag of worms" tongue twitches - but I got tested earlier this month and my test was also clean. I no longer suspect ALS.

    Another thing is I've read that with ALS you typically will not notice the twitching.


    One last thing: your surgery touched on a lot of nerves, so you are still in a stage where the inflammation is healing from the surgery. Give it another 3 weeks and if your symptoms get worse, I would bring it up to a neurologist and start scanning for autoimmune diseases... this is the boat I'm currently in.

  • nutcase007nnutcase007 United StatesPosts: 626

    @raxmeless and @SteveMills - I've be through three ADCFs.  All of them, the first week or so, I felt great.  Then the reality of recovery sets in.  Please do NOT play self diagnosis!  You are likely going to create a lot of stress for yourself.  If you are having issues of concern, please update your surgeon.  I'm now nine weeks post-op from my last ACDF.  Recovery is taking a lot longer then my first two, but then my surgeon told me he had to perform some very extreme stuff in this last surgery. 

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  • WLLadyWLLady Ontario CanadaPosts: 1,218

    I am an ALS expert....if you had your neck worked on, that is the most likely explanation for the hand/arm weakness.  you need to talk with your surgeon AND if you are still worried about ALS then get in to see a neurologist-not an ortho-a neurologist.  There are very specific tests for ALS, and imaging tests (MRI) to determine what is going on.  The inflammation from surgery and scar tissue from surgery can also be a culprit in snagging nerves mimicking an upper motor neuron issue-so PLEASE call your surgeon. 

    Kathy
    Spine-Health Moderator
    ---------------------------------------------------------------
    Dec '16 T10-S2 fusion with pelvic fixation. Laminectomies L2, L3, L4, L5, facet removal, cages L4-5, L5-S1, severe scoliosis, arthritis and stenosis repair. 

  • I also recently posted  regarding similar concerns on whether surgery was right for me or not. I'm 8 weeks post C4/C5/C6 ADR and my symptoms have no change/worsen.  I had no significant injury before my surgery, and my symptoms became progressively worse from aged 11 till 20(now). Through this 8 weeks, i had the same scare as you that my surgery was unnecessary and that I had other problems instead such as ET, ALS, MS, Thoracic problems, Lumbar problems but all debunked by my neurologist and researching extensively online.

    I have come across online a few recovery stories where patients would just wake up and feel better after months of no changes post-operation. I am hoping that is the case for us. 

  • @nutcase007 @SteveMills please reply and update on this thread about your recoveries. Need some hope as well.

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  • ALS and MS symptoms are very similar, probably other diseases too.  Don't study up on this, you are going to worrying yourself so and that is not going to help the healing process.  Please consult with a neurologist, if you don't have one, you should get one.  Good luck

  • nutcase007nnutcase007 United StatesPosts: 626

    @adamdaniaal - You requested an update on my recovery.  Tomorrow, it will be ten weeks from my surgery, an ACDF at C4/C5.  I'm now fused from C2 to C7.  My recovery progress has been very slow and increasingly painful.  This week I suspended my daily 30 minute walk.  It was causing too much pain. 

    I have an early three month post-op check-up with the neurosurgeon next week.  I expressed my concerns again of slow recovery to my neurosurgeon.  He had his physician's assistant (she assisted in my surgery) call me this week.  She told me if my x-rays that will be taken right before my three month post-op review show enough fusion progress, the neurosurgeon will likely order physical therapy or enter me into some type of spinal rehab program.  She went on to explain that my symptoms sound like symptoms commonly experienced by patients were most of the neck has been immobilized.  I really did not have much of an alternative choice to surgery because of my gross cervical instability.    

    So, how unique is my case?  I really don't know, but get the impression from my neurosurgeon that it is rather unique.  He has a very highly respected reputation and his speciality is complex spine issues.

    My recommendation to anyone who thinks they might have ALS or MS, first report it to your surgeon if you are post-op.  If you feel your concerns are not being heard, ask or find a neurologist or neuromuscular specialist to be tested.  Last year, while I was going thru my ten second opinions, I was tested by a neuromuscular specialist and he ruled out both ALS and MS. 

    You live in your body and if it is screaming pain, don't quit in trying to find a solution.  When a doctor states that "there is nothing found", that is all it means, they didn't find anything.  Don't let people get into your head and get you thinking that it is all in your head.  A sudden onset of pain of pain is NOT made up in ones head.        

  • Hey guys, thanks for taking to time to respond. I am still having issues. Will retest EMG to see if I should just move on to other causes.

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