Neck pain radiating to shoulder and heavy legs

[Grabbaholt]

My wife had a C6-C7 disk replacement in 2019. This did a good job of releaving severe neck pain and radiated pain from a herniated disk. Unfortunately she has general degenerated disk disease in her neck and also lumbar spine. She still has some pain in her neck, but in the last 6 months has developed a feeling of heavy legs. It started in the left leg and now is in both. She hasn't fallen but just says it's hard to walk. Also taking a shower is very uncomfortable on her feet. Sandles help. The an MRI confirms that she has moderate stenosis in her C4-C5 and has recommended fusion. Her lumbar has moderate disk height loss in L4-L5, but it doesn't seem like this is causing the heavy legs. Just curious if anyone with CSM has similar symptoms. We have been on a 3 year journey and it has taken a toll on her. We just want to make sure that a fusion in her neck is the best next step.

[Helen0304]

I had C5-7 acdf just over 3 weeks ago. I had the radiating arm pain. I was tripping over thin air and my foot seemed to be almost stuck to the floor sometimes. I wouldn't say that I had a feeling of heavy legs but if I laid on one side then the underneath leg went numb. I'm early days in recovery but I've still got some radiating pain in my arm but the numb feeling in my legs has gone. If you are on Facebook there are some really good groups that you can join with thousands of people who can help you.

[Grabbaholt in reply to Helen0304]

Congratulations on your surgery. I hope and pray that things continue to improve. How has the post surgery recovery been?

[Helen0304 in reply to Grabbaholt]

Thank you. It is definitely up and down. One day I think I'm doing well and the next day it feels like I've gone back a step. I saw one of the specialists last night, because the gp thought my wound was infected, luckily it wasn't. The specialist seems to think I'm doing well, I've got a good range of motion and he said that he hopes to see more improvement in my symptoms.

[Grabbaholt in reply to Helen0304]

Hi Helen, just checking to see how your recovery is going. I do hope and pray your still improving.

[Helen0304 in reply to Grabbaholt]

Hi. I thought I was doing quite well because my worse symptom in my arm and hand have got better. I still get numbness pins & needles in the arm and hand but nowhere near as bad as before the op. The problem is that my balance issues that had disappeared post op have now come back. I am tripping over and now using a walking stick which I wasn't using before. I had my 2 month post op appointment with the consultant last week and he said if the balance issues haven't gone in 3 months then he will give me another mri but of my cervical, thoracic and lumbar as he isn't convinced that the leg issues are coming from my neck. I am starting physio next week and really hoping that will work. How is your wife?

[Grabbaholt in reply to Helen0304]

So sorry to hear this. Cervical surgery is certainly substantial. I'm praying for continued progress.

[Hidden]

Hi there, I had c4c5 fused in 2013 but in 2020 I had to have c3c4c5 fused and I still have all the symptoms pain, tingling, and bladder and bowel problems . You have to remember that which disc's are fused they put added pressure on the outer disc's and cervical myelopathy can't be cured . Clive X 🤗

[phyllisha]

Sounds like myelopathy,but ask the dr. i had heavy legs & feet, especially on left. much better after surgery but in Physical Therapy for gait&balance

[Grabbaholt in reply to phyllisha]

Thanks so much for your reply. What kind if surgery did you have and how long ago?

[phyllisha in reply to Grabbaholt]

PCDF from C4-T2. i have 10 screws& 2 plates. this was 7 months ago. rapid recovery first few months but slow& steady since then.

[Hidden]

Hi there.

It's unfortunate that your wife is already experiencing a deterioration in symptoms after only 2 years. Unfortunately this can happen & it's usually due to something called adjacent segment disease - always a risk as if you fuse one part of the spine as the subsequent wear & tear is referred up & down to other areas, which then wear out more quickly. The problem is the neurobods can't yet predict who will deteriorate & how quickly. The good news is that they have identified the problem & are wanting to act on it. We have a saying #TimeIsSpine - anyone with neurological symptoms ideally needs to be treated within 4 - 6 months of symptoms first appearing to stand any chance of neurological recovery (if any - as that isn't guaranteed).

Heavy legs & feeling like you are walking through treacle is due to the spasticity & hyperreflexia caused by myelopathy. It is considered a later sign of the disease, but can progress very rapidly so I'm glad they've picked up the issue in your wife . Any spinal cord injury in the neck region affects everything below the site of the injury - even incomplete injuries like ours, so although one would expect this to be a lumbar issue - if there are issues of cervical spinal compression it's best to get those sorted first as sorting the lower back out won't necessarily be effective. Here's a really useful video to show how cervical myelopathy affects your bodily functions.

youtube.com/watch?v=tYupMC1...(Not working as expected?)

Best Wishes

Shirley (mod)

[Jody1964]

Hi Grabbaholt I just read about your wife’s heavy legs how is she doing? I’ve had C2-T1 fused and L4-5 I do have degenerated disk disease, I started having heavy legs a few months ago not every day but once or twice a week I’d wake up my legs are so heavy I can’t do anything but lay in bed and lately it’s my arms to and my face will feel weird tingly heavy, I’ve seen my Cardiologist she felt the pulse in my feet said it sounded good but because I started wearing compression socks my legs felt little better she going to do an ultrasound of my legs and said it was probably from Lupus and the inflammation is causing the heavy legs I’m sorry I don’t buy that excuse.

I’ve had a ct scan of my neck a few wks ago and only showed some changes since my last one with quite a few bone Spurs but my PA I see at the office isn’t worried about it but my neck seems to get stuck (feels stuck) when I’m sitting up straight or driving so I push it down and the crack is so loud the pain shots down my left side to my big toe and feels like a shock. I’m having nerve test again in my arms than my legs. I thought this was caused by leg circulation I never thought it be my neck or spine But I will see my surgeon and talk to him. Will you please let me know what your wife’s doctor says I’ve been going crazy trying to find out what this is and what is causing this. Take care.

[Grabbaholt in reply to Jody1964]

My wife's situation has improved a bit. She started on Cymbalta and this has helped with pain. She still has heavy legs, but we try to get out a walk twice a day. We consulted with her surgeon and her heart doctor as well. She is wearing compression socks and this seems to help. The surgeon says that it's possible that the heavy legs is impacted by the neck, but it's not typical. We did also complete a vein study in addition to checking her arteries and looks like arteries are good, but she does have what is referred to as vein reflux disease. Seems like her blood return on the periphery is not that great and it could cause some heavy legs with blood pooling and inflammation, but again, it's not conclusive. There are procedures that she could do to address this, but we are not sure that it is the primary cause either.

There are a couple of general items that are worth mentioning. Her blood pressure is generally low. ~98/65 is a typical reading. When it's real low she tends to feel weak. Not sure if her blood pressure has always been low, but since we have started measuring it it seems to be pretty low. Next, since her neck surgery she just doesn't have the energy like she used to. Lot's of thinks that might contribute to this, but she thinks it's related. Could be considered a very mild case of Chronic Fatigue Syndrome.

We have also consulted with a Neurologist and he does not think there is anything neurological going on. Nerve conduction and EMG tests all came out normal.

Finally, one last item. We completed a virtual second opinion with the Cleveland Clinic here in the United States. They offer this as a paid service. It's not cheap, but we were headed into surgery and wanted to make sure that it was the right decision. We might with a cervical spine specialist and he was skeptical that the neck was causing my wife's issues. She does have mild spinal cord compression, but based on his knowledge and expertise he just did not think that it was enough to be causing any issues. He also said it was possible, but he used the word atypical.

Anyway, glad you reached out. It's good to be able to share with others. Seems like there are no clear cut answers so we have to make the best judgement we can.

[Jody1964 in reply to Grabbaholt]

Thank you for returning my reply, When did your wife have cervical surgery? I know with each of my cervical surgeries they where all different in recovery time. I use to take Cymbalta for a few years and I do remember it making me tired I did wean myself off.

You both must feel so frustrated not being able to get straight answers. I saw my neurologist a few days ago he did the nerve study on my arms which was fine, I talked to him about the heavy legs he wants me to get a MRI of my neck of course he says the same thing as your wife’s doctor it’s probably due to your neck, he was in a rush so I didn’t have time to talk to him more about it I’m going back next week for the EMG on my legs and discuss my results of the CT Scan.

I have had pain in my calves for almost 10 years but this heavy legs is something that came on suddenly along with dry mouth shortly After my Covid Vaccine.

What I have been doing is setting my alarm at night every three or four hours to get up and walk around the house for a few minutes which I’ve noticed seems to help with the heavy ness when I wake up, I do wear my compression socks almost 24 hours a day I don’t know if it’s good for me or not but it helps. I also started taking a lot of different vitamins with extra B12, iron, turmeric, a few others because I too was always so tired.

What will be your next step? I can’t thank you enough for your information it has really helped me and which direction I should go next, seems I too am going in circles with no answers.

I hope your wife’s feels better soon and you get some straight answers. take care.

[Flynny2]

I have exactly the same with my legs and was diagnosed with CSM 2 weeks ago in C5-C6 it was really bad but ATM it seems to have eased off slightly and I'm just in constant pain with my neck ATM. I have an appointment with my neurosurgeon on 16th to discuss decompression surgery. I wish your wife all the best. I second recommending the Cervical Myelopathy groups on Facebook for you and your wife as it's great to talk to like minded people and also get lots of answers. The members are lovely too 😊

[Bullockj]

Hello😊 I had/ have cervical myelopathy i had a 2 level fusion with artificial disc implants and cage fitted in c4/c5 c6/7 in 2010. I had an almighty electric shock down my whole spine thought I’d trapped a nerve but got up the next day and my left leg didn’t work was dragging it along the floor the drs thought I may have had a stroke at 42yrs. Gym fanatic at the time. Had pins and needles in left arm and hand. After a week of investigations and finally an MRI they found discs had imploded onto spinal cord strangling the cord. I was sent to Sheffield hospital and had an emergency operation to prevent paralysis from neck down. Very long recovery 18 months and left with slight spastic gait. All good until 5 years later and had severe pain from neck down right arm and hand. I have forminal stenosis where bone channels for nerves are to small and this causes nerves to be rubbed causing pain. I had another op exterior acdf after this I have scarring on my spinal cord and signal changes. This has caused my legs to be heavy I feel like I’m dragging a 90 year old carcass around. I’m unable to work now. Burning stabbing pains permanently have nerve pain. Life has changed so much. My right hand has permanent nerve damage. Have felt so alone with most people unable to understand and hidden disability’s are.Sorry for long long post. Don’t wait stenosis to get worse. They can’t make you better but they can stop it getting worse. I’d say definitely go for it before cord is damaged. Good luck and I Hope this information helps. Best wishes x

[SheilaDugan Administrator]

Hello, I complained often to my doctor,however was told nothing was wrong, however I had a compressed spinal cord. The problem. Please press the doctors and be your own advocate.

The result with mine is doctors negated my symptoms, I could only explain that I felt like the "tin man" in the movie Wizard of Oz, I needed oil to keep going. After years of me explaining I finally ended up needing emergency surgery. In my scenario they didn't do anything until I couldn't walk.