Welcome, Friend!

It looks like you're new here. If you want to get involved, click one of these buttons!

Veritas-Health LLC has recently released patient forums to our Arthritis-Health web site.

Please visit http://www.arthritis-health.com/forum

There are several patient story videos on Spine-Health that talk about Arthritis. Search on Patient stories
Protect anonymity
We strongly suggest that members do not include their email addresses. Once that is published , your email address is available to anyone on the internet , including hackers.

All discussions and comments that contain an external URL will be automatically moved to the spam queue. No external URL pointing to a medical web site is permitted. Forum rules also indicate that you need prior moderator approval. If you are going to post an external URL, contact one of the moderators to get their approval.
Attention New Members
Your initial discussion or comment automatically is sent to a moderator's approval queue before it can be published.
There are no medical professionals on this forum side of the site. Therefore, no one is capable or permitted to provide any type of medical advice.
This includes any analysis, interpretation, or advice based on any diagnostic test

Cervical Myelopathy With Spasticity 5 years after 2 Level ACDF?

SpicoliSSpicoli Posts: 10
edited 11/18/2014 - 3:11 PM in Back Surgery and Neck Surgery
I'll try to keep this brief..so hard. Any input will be greatly appreciated.

In 2009 I had a 2 level (C5/6-6/7) ACDF. After the Surgery they explained that since we were in there do not be surprised if you occasional have a flair up or issue. If so we can give you a shot. It did happen a year later and the block helped.

2 Years go by and all is fine. Then in 2012 I had a few months of neurological problems that they swore were not related to my surgery....Thats when I posted my last post. They thought I had MS but that has been ruled out due to not passing the Spinal Tap. Now This April I started to have horrible calf charley horses at night, lasted 2 weeks. Then in the same leg it started to feel heavy. At the same time I got neck and shoulder pain followed by hand pain and cramping. All on the same right side. Leg, hand shoulder arm.

So through June July and August I was poked prodded and drawn of LOTS of blood. Spinal Tap, Brain MRI..the whole thing.

No MS (One O band but serum had elevated protein.)
No lyme
My Brain has many WML's but do not coincide with MS
All levels of my spine show no infractions.

In October we noticed I had Drop Foot. It was diagnosed through an EMG Also was discovered I have Hyperreflexia. I was also diagnosed with spasticity and muscle stiffness.

All of my doctors have been not very forthright I feel until lately, and here I still have questions.

After all of these tests, I finally asked..."what do you think this is?" I was finally told "We think this is Cervical Myelopathy with Spasticity"

What confuses me most were the keg findings. The EMG doctor confirmed that the nerve wa snot damaged in my spine or leg or knee to cause the Foot Drop. So what did? She found a "Distress" signal from my L5 but there is no spinal cord damage.

Finally (brief yeah right :)) Spasticity, Hyperreflexia, Foot drop can all be caused by an ACDF years later? I do not believe them...please prove me wrong


  • I see I posted a similar question a year ago.

    This, I guess is still the same ride. My head is clearer now. So this info is accurate.

    So no one has any input on this?

    I was hoping to find someone who can explain Myelopathy without having proof physically. My doc explained it like this...

    "When Polio patients recover, some, many years later have some symptoms come back but they do not know why.

    I was too confused to have her explain more but she said "We can't see all of your spinal cord" Another doctor said that sometimes the damage done to a spinal cord is not seen for many years later.

    This is my "bump"

    If you have read this, why not respond?

    Thanks. Not too worried just looking for some feedback. Today I am starting Baclofen. The Tizinadine was not effective and made me feel drunk. These cramps and spasms are ridiculous in cold weather.

  • Have similar issues. I just sent you a private message.
  • I have had cervical and lumbar surgery in past 4 years. Have similar issue.
  • Thanks. Update. I have developed claw hand from some sort of nerve damage to my nerve. My neuro who by the way specializes in migraines and epilepsy, FINALLY is referring me to a neurosurgeon. I don't plan on getting sliced up again but he should be more familiar with my condition. My neuro also recommends yet another brain and cervical MRI. I hope this is not to appease me. I just had one in July.
  • Yesterday I had another cervical and brain MRI. I have it here, looked at it and it doesn't look good at all.

  • medical testing , images or results. When do you see your doctor again?
  • I was diagnosed with Cervical myelopathy caused by a herniated disc at C5 and C6 that was putting pressure on my spinal cord. I was having issues for 3 years before I got help. I get frequent headaches that rival migraines. I had surgery in September. Surgery has not rid me of the pain and other issues that I had experienced before surgery. From what I have read, lots of people with myelopathy are about the same after surgery as they were before surgery. I have noticed a lot of fluctuations in pain based on the weather myself.
    Tracie C
  • Have been following most of the comments posted on myelopathy. I don't know if I've ever seen anyone w/myelopathy have much, if any, recovery from it. Would love to hear some positive stories if anyone has any. One NS told me I'd probably recover about 50% of what I'd lost and the other said it would take 6 mos. or more to know what I'd get back. Had a 2 level ACDF in Oct. Still have all of my pre-op symptoms (with the exception of bladder improvement.) I'm beginning to wonder if my Drs. exaggerated. Any thoughts or comments?
  • I am starting to believe that it is so dependent on individual circumstances that they can't give us the answers we want. Take my mom and I for example. I had only c5 and c6 fused. I have been dealing with pain for 3 yrs. I am still having daily issues with pain and everything. The disc that was herniated was causing compression on my spinal canal. My mom had anterior and posterior fusions from c4 to c7. Her spinal cord was also being compressed by bulging discs and she had stenosis caused by a narrow canal. Hers was caught early enough that surgery has brought much relief and improvement. We both were diagnosed with myelopathy. Why is she doing better? Who knows besides her not having issues as long. I believe that there is still something not right in my neck. My xrays show a bulge near the base of my skull within the skull. My mom's xrays don't have that bulge.
    I really wish we had answers. My bosses cant believe that surgery hasn't fixed my problems.
    Tracie C
  • I did a lot, a lot of research in my acute post op time (what else did I have to do?!?!) and from what I found, one has a 70-80% chance of at least 50% improvement. It is a worse prognosis with age, length of signs (greater than 6-12 months), severity, and maybe T1 signal. Lots of other factors thrown in there as well (surgeon skill, etc).
    I would like to think I'm a great candidate with my age and duration, but my canal was so narrowed (45 mm) that I'm a bit scared it was too severe. Time will tell, and I'm pretty darned impatient!

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

  • is the difference, along with the amount of time that the cord has been compressed. Nerves within the spinal cord do not regenerate, as do peripheral nerves.
    If compression of the cord and it's nerves are involved, two people can have compression of the cord at the very same levels, but their outcomes depend on what specific nerves within the canal themselves were damaged.
  • SpicoliSSpicoli Posts: 10
    edited 04/23/2015 - 12:14 PM
    My Doc's have confirmed to the best of their knowledge it is an upper motor neuron lesion from my cord damage almost six years ago.

    The spasticity has changed to weakness in my legs and I am slowly going I think Tetrapalegic . After x amount of steps my legs wont move no juice. Now my hands are going they are always a few steps behind the legs. I will no longer be able to walk or work. Hoping it stops tomorrow and it spares my hands.

    Again this was a C 5/6~6/7 2 level ACDF from 2009. Last year i lost my balance and slowly have had painful spasticity, fasciculations, and weakness. MS, ALS and all of the heavy hitters have been ruled out. PLS is the only other possibility.
  • Spicoli,

    So sorry to hear about the new problems. Is the upper motor lesion from the compression (I assume)? Did the Drs. say why the myelopathy is progressing? Do you know if you had myelomalacia? Sorry to ask so many questions but this is very puzzling. Have you had a recent MRI or CT scan? I hope you get some answers soon and avoid a worsening of your condition.
  • Spicoli, so sorry to hear about your decline. Have they done a recent MRI? Do the Drs. think it's just the myelopathy progressing (w/o compression) ? Have your MRI's ever mentioned myelomalacia? Hope you get some answers soon. Take care and hang in there!

  • WolfenJackWWolfenJack Posts: 1
    edited 05/19/2015 - 6:10 AM
    I had my acdf 2 1/2 years ago for c5/c6. Compression was pretty severe and had begun effecting legs by the time I had surgery. The surgery corrected some of the leg numbness but left me with way more pain in neck and scapular region than before. I am on disability mostly because off pain and fatigue. Pool therapy has been helpful. Severe nerve pain has been hard to treat. Opiates effective for mechanical pain but not so much for nerve pain. Gabapentin did nothing for me. I discovered carbamazepine [tegretol) by acident when I suddenly develped trigeminal neuralgia. Lo and behold it had a significant impact on my neck and shoulder pain. More recently I decided to stop the tizanidine because it didn't do much for my spastic legs ( I need a cane to be mobile] and it mademe sleepyand grouchy. Switched to baclofen and it has been a miracle for me. It is synergistic with both the opiate and the carbaamazepine. So part of the benefit is that these medications work well in concert with one another. Baclofen can have terrible side effects for some, as does carbamazepine. But for me they have been a really good fit. Best of luck. I too have gone down the MS pathand sometimes still wonder. I think it is the demylination that can happen inboth diseases that cause them to look alike. cervical mylopathy has seen much less research tho and I think the medical establishment has much to learn. I know I have been treated like I am crazy by doctors on more than one occaision and until this happened tome I was never one to complainabout my health.
  • I had acdf c5-c6 and c6-7 15 years ago. 3 years ago my problems started again, head aches numb right arm to fingers tons of neck and shoulder pain. Last mri Dec, 2014 showed osteophyte complex which flattens thecal sac from c3-5 and disc bulge at c7-t1.
    Monday the pain clinic said I need to go back to the surgeon that did my l3-4 fusion last sept. They said I don't need to put it off any longer and that since my right arm is getting weaker I need to take care of it now.
    I agree Wolfenjack I had no luck with Gabapentin for nerve pain. Topamax did not work also. Thanks for the tip on Bacofen, I will talk to my doctor about trying it. I really don't want to go see the surgeon yet. I don't know how much longer I can handle the head aches and nerve pain but since I had an acdf already in the same area that I am having problems I feel the risk involved with surgery may be worse than trying every other option available. Anyone with advice on this I would love to here from. And good luck to all. It is really sad to see how many people suffer from spine heath issues but is comforting to have someone that can relate to similar health problems.
  • tyson13ttyson13 Jacksonville FloridaPosts: 1
    I had a 2 level fusion 7 years ago.  I recently got rear ended in another collision, so I ended up having another MRI.  It looks like the disk below has some damage but also has been shrinking due to the fusion and having an active lifestyle.
    Ever since the first car accident which led to the 2 level fusion in the 4/5 & 5/6 area, I have had leg weakness, oddball reflexes once in a while and also coordination problems with quick reflex sports.  I can still play some sports, but not at the same level as before, some due to age likely, I am still in great shape.  Once you have the surgery or contusion, remain active and keep working out even if it is body weight and machine workouts, it will help.  You also cannot be negative about it, the stress will affect your nerves and recovery, just appreciate what you still have.  I have been through this and had to move on and have learned to remain active and adapt to new exercises.  I was a college athlete and also traveled the Country with other sports so it took a toll mentally.  Keep positive.

    i was also tested for MS, and other medical issues, but it turns out my issues are coming from somewhere in the cervical area.  My nerves are charged all day sometimes and I tend to get lower leg weakness in the afternoons. 

    hope this helps
  • AMWoodyAMWoody SurreyPosts: 97
    OH I am so relieved to haev found this post... I have been having violent stretching  in the morning which is terrifying. I have told my PT and she has told me how to position myself so that it does not cause injury. Today I did my own research and found SPASTICITY. It is exactly how I feel and then I found this post..... I am not sure what to do now. I don't want more medication EVER but boy the stretching is beyond belief.
  • I too have the "take over my body stretching" and feel my numbness and weakness is getting worse. My surgeey was 9 months ago. I had an ACDF 6/7 for severe cervical myleopathy. Pain is not bad but burning and numbness on legs and back really alarms me. My legs are weak however my gait has improved somewhat since surgery. My legs don't feel as heavy but still aren't right. Feel like a rag doll were my legs and body move.
  • SavageSavage United StatesPosts: 5,476
    Hello tyson13 !
    Welcome to Spine-Health
    Please click on link for helpful information!
    Spine-Health Moderator
    Please read my medical history at: Medical History

This discussion has been closed.
Sign In or Register to comment.