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Cervical myelopathy recovery

flowerladyfflowerlady Posts: 35
edited 11/03/2014 - 1:58 PM in Back Surgery and Neck Surgery
Had a 2 level ACDF on Oct. 3 with instrumentation for advanced cervical myelopathy. At one month, have not had a lot of improvement. Knowing that myelopathy complicates things, was just wondering what to expect in regaining my deficits. My NS said it could take 6 mos.or more to know what is going to improve and what isn't. Would appreciate any input from those who had a similar diagnosis. Thanks.


  • There is no one who is qualified to give you that information. Damage to the cord can result in permanent deficits, and alot of that depends on how long the compression was there, how severe it was, and what areas of the cord were involved.
    Your surgeon is right, it is going to take time to see what improves and what doesn't.
  • rtconant1rrtconant1 Posts: 348
    edited 11/04/2014 - 4:18 PM
    I also had Cervical Myelopathy caused by herniated disc. I was told by my Neuro surgeon that it will take time to know what the recovery will be. I was also told that it depends on how long you had it. A month really isn't that long. I had ACDF at C5/C6 surgery on September 9th. I still have nerve pain and other issues. The Doctor told me that the surgery was not guaranteed to get rid of the pain. It was to take the pressure off of my spinal cord and keep the myelopathy from getting worse. At my 6 week appointment, I was started on gabapentin. I have daily severe headaches, nerve pain in my neck, head, arms and sometimes in my legs. But that's just me. I was also started on physical therapy to be able to deal with the "flare ups" that I have gotten for the past 2-3 yrs. I have only had 1 flare up since surgery.
    I hope for your sake that it goes away. Just try to be patient because it is such an individual result. There are no definite answers.
    Tracie C
  • Thanks, Tracie. It's good to get feedback from someone who's been there. I know that no one here can give me medical advice. I can get that from my NS, but I think it's important to share with others. I would love to stay in touch with you.
  • rtconant1rrtconant1 Posts: 348
    edited 11/05/2014 - 8:46 AM
    Sure we can stay in touch. Its hard going through all of these uncertainties. About a month after I had my surgery, my mom went through a similar surgery. We both had spinal cord compression issues. Her issues were caught quicker than mine and she may have less permanent damage but who knows.
    Tracie C
  • skbiggiesskbiggie Posts: 13
    edited 11/17/2014 - 4:01 PM
    I had surgery this past May for a recurrence of myelopathy. 6 mos in, I still am not feeling any stronger. My surgeon tells me to give it time. It can take up to a year and a half to make any kind of a recovery. Am feeling a bit depressed that things are moving so slowly. It's my legs that get to me the most, making me constantly aware how weak they are. Any words of encouragement from someone out there who has been thru something similar would be greatly appreciated.
  • I don't have any words of wisdom but I find this condition depressing also. The pain and weakness seems to be always there. Everyone at work expects that when I return to work I will be back to normal just like the others at work are after their surgeries. I talked to them about their experiences before my surgery. Their situation was different than mine of course since we are all different. It has seemed to really sink in this week. I don't know if I was in denial before this but reality has hit.
    Tracie C
  • flowerladyfflowerlady Posts: 35
    edited 11/27/2014 - 1:30 PM
    I agree with both of you, it is very discouraging. I have to constantly remind myself to be patient but it's hard. Don't have any pain but the weakness is horrible. Was wondering if anyone has had luck building back strength with exercise. I don't know if it works the same way with myelopathy. Has anyone tried water exercises?
  • I had spinal cord and nerve root compression before having surgery this past April, and I'm also struggling to recover. My cord was compressed to 40% of the normal diameter (severe stenosis) for over a year, and I also had bilateral foraminal stenosis for a year at least. Before surgery, I had lost a lot of strength in my right arm, had been losing strength in my left arm for several months, and had to use hiking poles to walk because I felt like my foot would go through the pavement and bounce, very bizarre. I also had severe pain in both arms and in my neck, including the feeling of being electrocuted at times. All of this started in 2012, and surgery was delayed by over a year to try pain management despite the severe stenosis, then got delayed again by 6 months because I visited 6 different surgeons and each had a different surgery they wanted to do, including ACDF only, laminectomy/fusion only, and 360 degree ACDF with posterior fusion. My signature provides the final diagnosis and surgery I had this past April.

    I was amazed to have my walking returned to normal almost immediately post op, and I haven't had a balance problem since. I got most of my strength in my right arm back, but my left arm still hasn't recovered very much. I have pain in both arms, including what seems like tendonitis from my elbows into my wrist and occassionally shooting into my fingers, and in my left arm only, I get what appears to be trigger points in my bicep, deltoid, and even tricep muscles and tendons. The neck pain is SLOWLY getting better though it can still get to 6/10 level of pain, but the arms still get to 7/10 daily, to 8.5/10 once a week or so, and pegged out at 9/10 recently when I tried to use the "darn the torpedos, full speed ahead" approach and did too much on the computer. 9/10 in my gauge is to the point of nearly passing out or vomiting from pain.

    I've been to physical therapy 30 times this year, and have 2 more visits to go. I'm on 12 different prescriptions, mostly for pain and muscle spasms.

    I went back to work too early and went back out on disability for several weeks, and now I'm back fighting to work part time, but thus far 4.5 hours has been my limit/record. People just think that we had surgery, so we should be fixed, but that sadly is not reality for most of us.

    I'm also discouraged because my son will go off to college soon and these are the final months of living at home. I am an outdoor person and would normally be golfing, shooting, fishing, camping, and hiking. I can't do most of those things now, which is bad enough, but not being able to do those with my son and wife is killing me. I can't even travel without having to make a bed in the car for any drive over an hour. But, I have faith, and believe that things will improve eventually. I'm just NOT a patient person in general, and especially not patient to sit at home when I should be outdoors, writhing in pain!
    Cervical laminectomy, facetectomy, and foraminotomy (3-6 of each) with instrumentation and cadaver fusion due to cervical spondylotic myelopathy, radiculopathy ,and spinal cord contusion - surgery done in April 2014.
  • Cervical myelopathy was my surprise diagnosis, with surgery on the 8th. I know everyone's story is different, but I am impatient as well! And hearing other stories just gives me more information as I sit and wait to see how close to my old normal life will get. Any changes in your stories?

    ACDF w/Corpectomy C3-6 12/8/14 ; Laminectomy C3-6  5/19/2016

  • For me at 10 weeks out, some symptoms have come back I hope that is because I'm pushing to hard because I feel good. Had a 3 level C4, C5, C6, C7. It is very discouraging....
  • KTm- what's your history? Age? Duration? Just curious, all of our stories our different.

    ACDF w/Corpectomy C3-6 12/8/14 ; Laminectomy C3-6  5/19/2016

  • TWynnB said:
    KTm- what's your history? Age? Duration? Just curious, all of our stories our different.
    50 years old. Symptoms started 7 years ago. I was misdiagnosed with Parsonage Turner syndrome at that time and did physical therapy. Symptoms initially started with weakness in right arm and not being able to move that arm to my back, as well as tingling in my right scapular. Immediately prior to surgery for (decompression of c4-5-6-7 with Cervical Stenosis with Myelopathya and Cervical Osteophytes) there was a loss of fine motor skills in both hands, shoulder pain and I dropped things a lot. They cleaned everything up and replace 3 disks with fusion.

    Right after surgery I felt great. All symptoms were gone. After about 6 weeks, the funny feeling in my right scapular returned and fine motor skills started to regress....I did start to push things a little because I was feeling great-->that's when some of the symptoms returned.
  • TWynnBTTWynnB Posts: 265
    edited 01/01/2015 - 3:41 PM
    Your recurrence story is a lot like Flowerlady's. It will be interesting to see if there's an explanation for either event. Hopefully you will both improve slowly but surely!

    ACDF w/Corpectomy C3-6 12/8/14 ; Laminectomy C3-6  5/19/2016

  • I am now suffering from a cold and I had this weird thing happen the first day of the cold that was very painful. I had no fever but I had chills with waves of "goose bumps" go from my scalp to my toes. It kept going on and on throughout the day. Every time I got these waves my muscles just hurt and my skin burned. By the time I went to bed, my legs hurt so much I bated to walk. I sometimes get goose bumps and I don't find them comfortable but never like this. Maybe its part of the flu or cold virus but no one else that had this cold had these symptoms.
    I also noticed that my fine motor skills seem to be getting worse instead of better.
    Tracie C
  • ScottKBSScottKB Posts: 10
    edited 01/02/2015 - 2:36 PM
    I thought I would chime in.

    My story... I had a disc herniation 6 years ago at C6/C7 and the resulting disc fusion surgery was very successful. The pain and numbness I had in my left arm was almost immediately relieved. Awesome!

    About 2.5 years ago I started having walking balance type issues. Just a lack of confidence in my gait. I have never fallen. About 6 months later, I started getting extremely cold burning spots (softball size) in the same spot on my right arm/elbow forearm and right calf. These sensations (gait and cold spots) were usually there but would come and go at first but are very persistent now. The doctor sent me to a neurologist who did physical therapy and ultimately an MRI (brain and spine with dye) which revealed another herniation with pressure on the spine at C5/C6. In the mean time, a warm spot developed on my left calf and numb/warm spot on my left back shoulder. The diagnosis was cervical spondylitis with myelopathy.

    I had surgery approx. 3 1/2months ago with an artificial disc at C5/C6 (successful according to surgeon and xrays) but my symptoms are sometimes even worse now. Furthermore, I now have some leg and arm pain with some occasional twitching and clumsiness.

    I expected the surgery to be the answer but I have so much anxiety now. I wonder if the cervical issue was not the real problem. Perhaps I have ALS or MS. I just visited the neurologist and she did another MRI revealing that the new disc was not pressing on the spine, some basic neuro tests again, reflex (no real reflex in arms, slight hyper in right knee #3 on right knee and #2 on left knee, Babinski (normal), standing and walking tests, strength tests, and ultimately stated that I did not have MS or ALS as I worried about. She is fairly positive its related to my cervical issues and recent surgery. She states that I just went through a major surgery and I need to give my body and spine time to heal. I hope she is right.

  • Did you have myelopathy? It sounds like you've had some improvement since surgery as you "feel good". Just wondering what kind of symptoms you had pre-op and now, post-op. I had a 2 level ACDF in Oct. and had a regression about 6 wks. post-op. It's improving very, very slowly.
  • K'anaPauliKK'anaPauli Posts: 1
    edited 06/25/2015 - 2:35 AM
    Hi All- This is my first time writing a comment hope it works. I had surgery Oct.2013 for Thoracic Myelopathy at T-11-12 as I could not really feel much from under my bra line down...I had a massive Disc rupture compressing the cord...Started Pt Jan 2014...The sharp pains,muscle cramps,burning,ext started getting better..Slowly but surely feeling started coming back and i stopped feeling like I was stuck in a snow drift trying to walk.. I am getting better but not perfect.....Now at my 12month check up I told my NS my balance is sometimes getting worse. Its my C-spine he believes (c-5-6) a rather large bone spur is compessing my cord..My hands are numb,I drop things,pain shoulders,to fingers, and some cramps to feet..So now I am waiting for a new date! I hope he is right again and this will improve..Good Luck to you all.

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  • Wow, talk about bad luck. Get the new surgery done. It's your only recourse for a tough situation. Best of luck.
  • So I had my surgery 5 weeks ago today, and I seem to be on a slow decline. I was trying to figure out though...I really don't stumble much while walking, which I did before surgery, but I seem to lose my balance a lot.
    I realized tonight that my balance issues are when I do a 180 turn, shift my weight suddenly, etc....and I believe I'm losing my strength in my left leg (which is by far worse than my left), so it gives out.
    Anyone else have an issue like this after surgery? My recheck is next week, although I did call this AM to see if I should go back sooner.

    ACDF w/Corpectomy C3-6 12/8/14 ; Laminectomy C3-6  5/19/2016

  • skbiggiesskbiggie Posts: 13
    edited 02/28/2015 - 8:12 AM
    Anyone have any new news to report about their recovery?
  • I started back to work on Feb 4th, very part time, and I believe that has hindered my progress. The last two days have been good though- my legs are tired, but not spastic; my arms are still burning but not bad. My legs were pretty bad for the previous week. I am starting to think I have mild dysautonomia, based on inappropriate tachycardia and other symptoms. My doc put me on Cymbalta to see if it would help my various issues, I wouldn't think it would help that fast on some, but maybe?
    Overall, very slow progress, but a glimmer of light in the last couple of days.
    Anyone else?

    ACDF w/Corpectomy C3-6 12/8/14 ; Laminectomy C3-6  5/19/2016

  • Are you still having issues with balance? Glad to hear you seem to be doing a little better.
  • Once in a while, I'll lose my balance, just out of the blue. I still wear flats, because I don't trust myself in anything with a heel - never mind, it puts too much strain on my legs. A shame, I could've used my nice boots today!
    How have you been, SKbiggie?

    ACDF w/Corpectomy C3-6 12/8/14 ; Laminectomy C3-6  5/19/2016

  • I had two operations within 3 months in 2012. I also had cervical myelopathy and disk compression of the cord and formidable stenosis. Prior to surgery I had lost movement of my right leg which was my only condition. I regained movement back after the first fusion operation. The second operation was to put in plates to support my neck. Today I have spasicity of both legs numbness if both feet and upper back spasms and tightness. Stop go to rehab and take Soma 350mg. Recent mylogram did not suggest any problems w fusion other than 1 screw listening but did also confirm that I still have stenosis in the c4/5 area. I was fused from c2 to t1. Has anyone experience similar long term issues and or if they have had any other procedures to eliminate these issues? Thanks. Larry
    Larry Konter
  • Hello:

    I had surgery on my neck c5-c6 on the fifth of august 2014 and had to translate a book to English in September, lots of typing.....

    I am living a hell of weakness in the legs, the thorax and arms...I had more strentgh before surgery, but my walking gait was already far from normal...I dont know that this is a long road , and uncertain....sleepless nights, headaches, depression, anxiety, but what annoys me most is the weakness.....is it permanent damage? I hope not....
  • David, there are a lot of us that are going through the same thing wondering if our situations are permanent. One can only hope that that's not the case. My Dr. says I will improve up to a yr. but I seem to have plateaued out at 5 mos. Myelopathy can be permanent but there are some people who do improve a lot. Here's hoping that that happens to all of us!
  • Yes, myelopathy can be permanent. But, to echo what Flowerlady said, that's not to say it can never get better. The PA at my NS's office tells me she has patients who have continued to recover function up to 3 yrs after their surgery, which kind of amazed me. So, there's always some hope.
  • Amen, skbiggie! Hope you are doing better!
  • Hello,
    My experience has been surgery this June, 3 levels fused at C4-C7. I am 3 weeks recovery time, and see my surgeon tomorrow for my first appointment. I do have less pain than I did prior to surgery, I used to have shocks in my fingers and hands constantly and anything I did caused chronic pain. I was down to 20% strength in my arms and hands, and could only lift a pound during PT. Even grasping objects would cause shocks in my hands. At least a few times of day I still have occasional shocks, but nothing like before. Mostly now it's muscle tightness covering the shoulder areas, arms and wrists. I am taking Tylentol Extra Strength and a muscle relaxer last night. Over all I feel improvement, but fatigue. I was told by a friend of mine that even though I am 3 weeks past surgery I am very early in my recovery and it is very normal to still need to nap ;) I am needing to wear a hard collar for 3 more months and cannot drive until the collar is off. This has been the most difficult part for me, the isolation and lack of freedom to drive. I do have good friends and family that have taken me out, but sometimes you just want to go by yourself! Anyway, I consider myself lucky that I survived surgery and am healing well. I guess we just have to carry on and be patient with our spines as they heal! Thank you for everyone who shares their story and experiences, it sure helps me not to feel as if I am the only one who is experiencing this.
  • Seems like you have little or no leg weakness from your myelopathy. If so, consider yourself lucky. This was my biggest problem from myelopathy. For me, at one year post-op now, (fusion from C3-T1) I can definitely say I have considerable improvement in my overall weakness level. It was a long way to get here, but I am thankful for the surgery. I think I may even experience a little more improvement over the next 6 months. Hang in there, things will get better for you.
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