Cervical disks and heaviness and numbness in legs

@rico2
What levels in your cervical and lumbar spine have disc bulges? Have you read your MRI reports to know what exactly is wrong and has the surgeon explained what is needed and why? Did they mention using hardware? I have a metal cage around my cervical spine at C5-C6 and I am still able to move my neck pretty well. Have you considered getting a 2nd/3rd opinion to consider other surgical options?

I also have lumbar spine problems L3-S1 (moderate to severe central/foraminal stenosis, degenerative disc disease, sciatica) and see a surgeon this week to understand what he would suggest. He did my ACDF surgery on my c5-c6 so I trust him. He may suggest doing a laminectomy and fusion plus foraminotomy to make more room for my L5 nerve roots on both sides. I have significant pain/weakness/numbness lower back, hips, buttocks, legs and feet and it makes it hard for me to do much. I can’t sit, stand, walk for long and need to change positions often.

My suggestion is to focus on your cervical spine first because damage to your spinal cord and nerve roots can become permanent if not decompressed ASAP. Do you know if your MRI shows spinal cord flattening/compression? Do you have any impact on bladder/bowel/standing up from seated position? That might make it more urgent for you to get 2nd/3rd opinions. How long have you been suffering with your symptoms?

Btw…I am a 55 year old female and my symptoms have been gradually worsening for 13 years but especially for the last 7-8 years.

@rico2 I was in a position of surgeons questioning where my symptoms were coming from and not recognizing that the sciatic pain and pain elsewhere in my body was only being generated by spinal cord compression in my neck at the C5/C6 level. I am sharing with you the medical literature that I found that changed my spine journey. These articles talk about a phenomenon called "funicular pain" or "tract pain" and there is no diagnostic test to prove that it is happening except than when you have surgery and decompress the spinal cord, it resolves the pain.

They can do an epidural spinal injection, and if that takes away the pain (temporarily), it suggests that it may be funicular pain (as stated in one of these articles). I had that experience in that an epidural injection in my neck took away all the pain, all the sciatic pian and all the body pain. Pain started comping back slowly on the 6th day after the injection, and it was back to pre -injection pain levels at about 6 weeks which is how long it takes for the body to metabolize the steroid that was injected. My surgeon could not guarantee that my C5/C6 ACDF surgery would cure this pain, but I knew that it would. I had paid attention from the very start, and my first indication of any pain being generated by my neck was when I turned my head, I got a pain in my ankle, and when I looked straight forward, the pain went away. It was reproducible and this was before the condition had advanced, so I absolutely knew my neck was causing sciatic pain. Your experience with an increase in symptoms with physical therapy is similar to mine. One of these articles relates to issues at C3.

I also experienced leg weakness and walking with an uneven gait or limp, and there was nothing I could do to walk normally. My spinal cord compression was at beginning stages and early enough that when my PT realigned my neck, I walked normally again, and my bladder functioned normally again until the next spasm. I was having trouble emptying my bladder when the muscle spasms straightened my neck and caused the vertebrae to put more pressure on the spinal cord. This was another clue that the cervical spine was causing these issues.

You might share this literature with your surgeon. Be careful in how you present them because you don't want to sound like you are telling the surgeon how to do his job. When I approached a surgeon at Mayo for care, I sent this first article with my request and wrote a letter about my symptoms, and I posed it as a question asking if my case was like this case in literature. That lets the surgeon be the expert and answer your intelligent question. The problem I had was that 5 surgeons missed this and missed the diagnosis, gave a wrong answer, and no one would help me bring this up because I, the patient, would be pointing out a mistake. It's best to ask this before the surgeon gives you and absolute answer about where he thinks the pain is coming from.

Ultimately, you'll need to decide if you want to proceed with surgery and listen to your gut feeling about your body. Your PT may have some valuable input. You may have issues in multiple places that generate pain and confuse getting a clear diagnosis because of overlapping symptoms. With your prior spine surgeries, that introduces a bit more complexity.

You may want to discuss this with @upstatephil because he had both cervical spinal stenosis and a lumbar spine issue and had surgeries on both. He reached a point where his legs were giving out under him and decided to go forward with surgery. He'll probably join this discussion since I mentioned him.

After reading this literature, what questions would you ask your surgeon? Do you have thoughts about surgery? I know that can be a hard decision to make when you have no guarantee that it will improve your condition. You may have some of your own insights that could be clues to a future surgical outcome.

Eur Spine J. 2011 Jul; 20(Suppl 2): 217–221.
Cervical cord compression presenting with sciatica-like leg pain
https://www.ncbi.nlm.nih.gov/pmc/articles/PMC3111492/
J Neurol Surg Rep. 2013 Dec; 74(2): 101–104.
Cervical Spinal Canal Stenosis and Central Disc Herniation C3/4 in a Man with Primary Complaint of Thigh Pain
https://www.ncbi.nlm.nih.gov/pmc/articles/PMC3836946/
BMC Musculoskelet Disord
. 2020 May 14;21(1):302.
Funicular pain: a case report of intermittent claudication induced by cervical cord compression
https://pubmed.ncbi.nlm.nih.gov/32410709/
Spine (Phila Pa 1976)
. 1999 Jun 15;24(12):1265-7.
Sciatica caused by cervical and thoracic spinal cord compression
https://pubmed.ncbi.nlm.nih.gov/10382257/

Hi Jennifer,
Would you be able to tell me what surgeon at Mayo you saw and that performed the surgery on your cervical spine? After seeing three different neurosurgeons locally, I traveled to Mayo and had an appointment with neurosurgery. After an exam and looking at all my MRIs, they concluded the symptoms were not spine-related, even though I have cervical cord compression at C5/C6. I have been in debilitating pain for almost 2 years, and walking more than a few steps has become extremely difficult. I greatly appreciate any advice you can give me. Thank you.

@nancydancer I had surgery with Dr. Jeremy Fogelson at Mayo Rochester for a fusion at c5/c6. Here is his bio.
https://www.mayoclinic.org/biographies/fogelson-jeremy-l-m-d/bio-20055624
May I ask what symptoms you have that they say are not spine related? Have they offered another direction to determine the cause of your symptoms? Have you had a spine injury or a degenerative condition? It doesn't make sense to me that cord compression at C5C6 would not generate symptoms and difficulty waking if it has advanced enough. Everyone is different, so my symptoms may not be exactly what you experience. Have you had any input from a physical therapist?

Hi Jennifer, thanks for your feedback. The doctors gave me no reasons for it not being spine related, other than the cord compression is "not bad enough" to be causing this. They offer no direction except to get more testing. I have no spine injury or degenerative condition. I've been tested for every condition imaginable. I did send my records to Dr. Fogelson and sent me a letter saying he would consider ACDF but he would have to see me in person first. I've attached an image of my cervical MRI if you'd like to take a look.

@nancydancer I think Dr. Fogelson’s response is positive. My MRI looked similar to yours and was only one level involved and you have several. I see discs that are bulging and touching the spinal cord and it can affect you even if it hasn’t progressed to permanent damage. I would encourage you to follow up with him. I think he will help you. He has to see patients first before discussing surgery which is expected and he would likely send you to neurology testing. He is being honest with his remarks. I trust his opinion over and above the other opinions you received. Dr Folgelson told me that myelopathy doesn’t always show on an MRI. You have to do what you think is right and keep in mind there are waiting lists for appointments with good surgeons. He wouldn’t have responded if there wasn’t anything he could do to help.

Jennifer, your comments and the fact that your MRI was similar to mine are very encouraging to me. I didn't want to go into all my details before, but I did actually go back to one of the surgeons I saw before and I took the letter from Dr. Fogelson to show him. Based on that, he said he's willing to do the surgery. It turns out that my doctor knows Dr. Fogelson, as they did residency together at the Mayo, so I think that influenced his decision. I do have the surgery scheduled now but I was feeling very nervous about it. This eases my mind, as it seems further proof that myelopathy is difficult to diagnose and affects everyone differently. Thank you so much.