Cervical myelopathy caused by herniated disc at C4-6 level

Hi @rjdm1 and welcome to Connect. That must be frustrating to constantly have tingling or burning sensations in your legs.

@amywood20 @patrick17 @jenniferhunter all have experience with ACDF surgery, or a cervical fusion, and may be able to offer you support and answer questions.

Have you been given any other treatments while you decide to do the surgery or not?

I have done PT, acupuncture & massage. To help the tingling and burning sensations I take pregabalin (Lyrica) twice daily. My question is to those who have had ACDF surgery with legs issues if the surgery relieved these symptoms and if not immediately was relief over time. I am also concerned about the overall risk of paralysis if involved in an accident of any kind. Is the risk greater for people like me. Thank you.

@rjdm1, @ethanmcconkey, Good afternoon. I wanted to thank you for sharing your treatment results. It helps other members understand both issues and opportunities.

In 2013, I had ACDF surgery. At that point I would just sit on the edge of the bed and cry at night when the pain prevented sleep. My Orthopedic surgeon met with the surgeon who had recently done his surgery and they decided I needed an immediate ACDF and fusion, I was more relaxed and comfortable with their joint decision making, Relaxed??? Did I say Relaxed? I trust my orthopedic surgeon and that helped. Be safe and protected. Chris

I almost forgot. The surgery was successful for a lot of my pain and disability in arms and legs. Then came the neuropathy. And we know that is a bit of a struggle every day. Chris

And this is my dilemma. I do not have any pain or disabling issues and this is why I am struggling with surgery. I struggle daily with neuropathy and so their is my concern if this will be relieved with surgery. How are you managing with your neuropathy and why did it occur after your surgery?

@rjdm1 When you are talking about cervical myelopathy, it is the pain in the legs that is confusing to a lot of spine surgeons. I had it too, and by also having pain everywhere in my body that was being caused by spinal cord compression in my neck was enough to prevent these surgeons from helping me. They were looking for the pain that follows the dermatome maps that show where each spinal nerve sends it's signals to the surface of the body. The spinal cord is like that giant cable that supplies the internet to a town, and when you crush a part of it, you can't guess who will get their service cut off. The spinal cord conducts communication signals in both directions between the brain and the body. It is called "funicular pain" when there is an unexpected pain such as leg pain from spinal cord compression in the neck. Prior to my spine surgery, I could change where my pain was simply by turning my neck. I had a collapsed C5/C6 disc and bone spurs that pressed into my spinal cord in front. When I read the research papers of a Mayo neurosurgeon, I didn't understand the term, "funicular pain" and I looked it up. Here is the literature I found that explained what all the other surgeons had missed and this highlights a case where the only complaint was leg pain that was caused by cervical cord compression. This is something that is easy for a doctor to miss, and it my case it was missed by 5 specialists. I found this medical literature and contacted a Mayo surgeon with it and I was right. I had funicular pain. My guess is that you probably have it too, and if your specialists don't recognize this possibility, you need other opinions.

This explains dermatome maps and where the nerve pathways go.
https://www.healthline.com/health/dermatome#dermatomes-list
Funicular Pain
https://www.ncbi.nlm.nih.gov/pubmed/20938789
https://www.ncbi.nlm.nih.gov/pmc/articles/PMC3111492/
To answer your question about if the leg pain resolved after decompression cervical spine surgery, the answer is YES and immediately for me when I woke up from surgery. I knew it would because before I came to Mayo, I had an epidural spine injection and it took away all that pre-existing pain temporarily. If you read the studies in the links, that was the predictor of if decompression spine surgery would resolve the leg pain. That being said, there is no diagnostic test to confirm funicular pain, and surgeons can not promise their surgery will fix it. I also knew prior to surgery, that when my cervical vertebrae were pulled out of alignment by muscle spasms that straightened my neck, it caused me to walk with an uneven gait, and when my physical therapist restored my normal curvature, I walked normally again which is further evidence that my leg function was affected by the spinal cord compression. Effectively the spasms made the spinal canal smaller when it straightened my neck around an already compressed cord.

If you are thinking about your situation just as unrelated neuropathy in your legs, that may lead you down the wrong path in your decision about the benefits of spine surgery. Another factor to consider is that nerves can take compression up to a point, but if it gets worse and goes on longer, at some point nerves will die, and leave permanent disability to any organ that they serviced. Some spine surgeons told me that the spinal cord doesn't feel pain, so don't allow that to be a bases of your thinking about if you do or don't believe that there is a spinal cord problem. Look at the MRI to see if there is any space left around the spinal cord, and consider how that will be affected with movement like bending your neck. If there are bone spurs pressing into the front of the cord, the spinal cord will be stretching across the sharp hard points of bone when you bend your neck forward. Right before my spine surgery, if I did this, I sent an electrical shock down my entire body. I think I was lucky and caught it just in time before permanent damage began. On an MRI, spinal cord damage shows a signal change and looks like a whitish area inside the spinal cord. My MRI did not show that, and I was told that myelopathy doesn't always show on the MRI, but if it is further advanced it will. I suspect the whitish areas of signal changes might suggest permanent damage, but only a specialist can answer that.

Paralysis is definitely a risk if your spinal cord is compressed, and another spine injury in this condition with a tethered cord will add to the problems. If your spinal cord is not floating freely in the spinal fluid with any bending of your spine, you are at increased risk of injury. Only a specialist can advise you on how much risk is present in your circumstances. Other issues are incontinence that can be permanent if decompression surgery isn't done right away. I was warned about that, and had issues with retention that were intermittent and happened when I lost my neck curve to spasms. Questions of adjacent segment disease vary person to person and that also happens to people who have had no surgery. The best you can do is to take care of yourself post surgery and not engage in activities that will put extra pressure on your spine, for example roller coasters. Practice good posture to take pressure off. I do physical therapy with myofascial release to take pressure off my body and loosen surgical scar tissue.

Hardware can be related to increasing the odds of adjacent segment disease because it is more rigid that natural bone (bone can flex), and because a fusion shrinks as it heals, and if the plate on the spine can rub on the next disc, it causes wear. Surgeons have to carefully calculate plate length and the longer the plate, the greater the risk of adjacent segment wear. I chose to have no plate and no hardware which I could do because I needed only one level fused, and I stayed in my neck brace for a few months. Fusing and healing depend on how healthy you are before surgery, and how well you take care of yourself afterward. Smokers have lower fusion rates because of lower oxygen saturation in the bones that are trying to heal. As for revision surgery, there can be a lot of factors. The hardware can fail. Poor bone quality. Screws can back out and implants can migrate. Some patients grow bone around artificial discs and try to stabilize them. This can also happen if a disc collapses and the body tries to stabilize it; the spine fuses itself and that may be a bad thing and can make something inoperable. It's also always good to ask what happens during the normal progression of the problem if no surgical intervention is done. The need for revision surgery can also be due to the skills of the surgeon who did the first procedure. Some are gifted and others are not, so find the very best you can before you commit to surgery. It was frustrating for me to be turned down by several surgeons over two years time, but in the end, I had a much better surgeon and I got my life back and I'm glad I didn't have a procedure with someone else. There can also be immune reactions to any foreign materials in your body. This lab does testing for reactions to implants, but that is something that can happen later down the road too. https://www.orthopedicanalysis.com/ I avoided this by having only a donor bone spacer implanted for my fusion and it healed beautifully. My surgeon told me fusions heal the best without foreign materials. This will be a long journey and recovery. Choose wisely. Let me know if I can be of further assistance. I did a lot of research in the two years that I was looking for help. I had a great recovery and would definitely make this choice if I had it to do again..

Here is my story. https://sharing.mayoclinic.org/2019/01/09/using-the-art-of-medicine-to-overcome-fear-of-surgery/

Thank you for a wonderful and very educational testimony. My journey has also been approximately 2 years. It all started with the tip of my right toe being numb. My GP sent me to a neurologist and I had the EMG and NCV tests that turned out ok. He wanted to send me to a podiatrist but I told him I think I need an MRI on my neck ( only because my mother and brother has had surgery because of cervical issues, seems it runs in my family) MRI results showed c4-5 with severe disc-osteophytic disease causing moderate asymmetric spinal canal stenosis that is more pronounced right of midline with spinal cord compression and compressive myelopathy, and severe right neural foremen stenosis. There is mild cervical kyphosis centered at c4-5. c5-6 moderate to severe bilateral neural formidable stenosis and mild spinal canal stenosis secondary to disc- osteophytic disease. I was referred to a NS and was told I needed surgery because of the herniated discs at the c4-6 level. However, he did stated that I could wait. He never told me I could be at risk of paralysis. He also could not say that the sensations in my legs were caused by my cervical issues but stated the surgery could relieve the sensations in my legs by 75% which in hindsight his statement does not make sense to me now. During this time it was so new to me I did not want to rush into surgery without learning more about this condition. I had a second opinion shortly thereafter and was told surgery is recommended.
I guess I am trying to find the best surgeon who I feel comfortable with and so the hunt continues. I live in Hawaii and would love to travel to the Mayo Clinic to find the best surgeon.

@rjdm1 It is definitely worth the effort to travel to Mayo for surgery. They will get all the evaluations done in a few days and not drag this out for months. I would highly recommend my surgeon, Dr. Fogelson and he is a compassionate down to earth guy and is one of Mayo's best. I agree with that, and that was what the former Mayo CEO said to me after I had sent him a letter about my experience. I thought that was pretty cool that a CEO took the time to write a personal letter to me and he thanked me. What you can do is contact Mayo and set up a temporary patient account. Check that they take your health insurance. Then to become a patient, you will need to send in copies of your imaging and records for review before you would be offered an appointment, and you can request that review from Dr. Fogelson if you wish. I chose him myself because of his education and accomplishments and because he has both neurosurgery fellowship training as well as orthopedic spine training. He teaches spine surgery labs at conferences and teaches in the Mayo neurosurgery program where he was also trained. He does both fusion and artificial discs and is a spine deformity expert. I had seen enough spine specialists and watched surgeon's presentations before I got to Mayo, that I knew he really knew his field well and was very confident, and I knew I was getting good answers to my questions. I was offered surgery without hardware. Mine was a single level fusion which made that possible. Surgeons in general seem to like using specific hardware that they have had training in from the manufacturers, and getting an answer from Dr. Fogelson that the fusion heals better with just bone instead of foreign implants was a welcome honest answer. A lot of surgeons just do fusion or prefer artificial discs, and you can get an opinion on both with him. It may take 3 months to get in to Mayo, so if you are interested, you should apply. I can tell you from my experiences, I will only go back to Dr. Fogelson at Mayo if I need further spine surgery and I highly recommend him. I was loosing the ability to hold my arms up and control them and I'm an artist. He gave that back to me, and I recovered great and his surgery took away all my pain. I am 3 years post op and doing very well. I also have thoracic outlet syndrome and am in physical therapy for that. I had to travel to Mayo in a long drive. The hotels are geared for travel with airport shuttles and shuttles running to all the medical buildings and there is a lot of info on their website with links about accommodations. Rochester is a nice small town city surrounded by peaceful farmland. They have a lot of winter snow that can hamper travel, and they have an underground "Subway" walkway to connect buildings and some of the hotels without needing to go outside in the cold. You might want to read research papers of any surgeon you are considering so you can make sure you will connect to their area of interest. I think Dr. F would be a good fit for you. Let me know if I can answer any other questions. Find the surgeon of your choice before you get into an emergency situation and end up with a surgeon you didn't choose, but need because an an urgency. Mayo has a lot of good surgeons. I also considered Dr. Bydon at the time, and he is in the news now because of success with regenerative medicine research and the recovery of a previously paralyzed spine injury patient who is now walking again.

Here are a few other links about Dr. Fogelson.
https://www.mayoclinic.org/biographies/fogelson-jeremy-l-m-d/bio-20055624
https://sharing.mayoclinic.org/2012/12/23/repaying-a-gift-scholarship-recipient-says-thanks-in-a-special-way/
https://sharing.mayoclinic.org/2017/07/26/spinal-surgery-saves-teen-swimmers-mobility/
http://www.startribune.com/in-second-term-minnesota-gov-markdayton-dealing-with-more-health-problems/361662931/
http://www.startribune.com/gov-mark-dayton-to-undergo-third-back-surgery/497015811/
https://www.mayoclinic.org/medical-professionals/neurology-neurosurgery/news/specialized-expertise-for-spinal-deformity-surgery/mac-20469055
Mayo Clinic Minute
https://newsnetwork.mayoclinic.org/discussion/mayo-clinic-minute-scoliosis-screening/

Amazing stories. Thanks again for taking the time to share your story. I also see that you are a very accomplished artist. I will certainly look into Mayo and check with my health insurance. I just wish Dr. Fogelson practiced in the AZ clinic which would be closer to Hawaii.

@rjdm1, Oh, I see why my response was confusing. I did not have neuropathy that I was aware of before the cervical fusion surgery. I had lots of bone spurs which needed to be removed. Recovery went reasonably well...........with 3 months in the brace to improve the fusion results. I now understand.....that 3 months of a brace is a small price to pay for a strong and lasting fusion. However, In about a year, I began to have tingles and needles in my feet and sharp shocks/zaps up my legs. The first diagnosis was Chronic Myofascial Pain Syndrome.

By the next year, in time for my visit with the neurologist, the arms, hands, and wrists were making their pain and discomfort known. Images revealed that one of the major nerves was taking a very long time to recover from bruising that sometimes happens inadvertently during the surgery. So we went with that issue for a while and I fell off the turnip truck into a massive depression. Another neurologist visit and a punch skin test came back positive for Small Fiber Polyneuropathy. I lost control of my world for a while.

The SFPN was a real bugger to deal with and it still is. At this time we have no known way to regenerate dead or dying nerve cells. We must learn to congenially accept what we cannot change. Perhaps we can eliminate or reduce the impact of some of those symptoms as we have resources to apply to that task. We hope for a noticeable moderation of our pain, a reasonable dose of energy and positive interest in our future.

And your last question....why did the neuropathy occur after the surgery? My diagnosis was labeled idiopathic. My musings seem to land on the possibility that more than 10 orthopedic surgeries in 25 years means my neuropathy had a long time to become idiopathic.

May you be free of suffering and the causes of suffering. Chris