Toe twitching/fasciculations?!

Hi, Jennifer
I was wondering what symptoms you were having with your C5C6 disc compression?
I also have a herniated disc at 5&6 and have had pain for years radiating down my arms and my neck. Lately I’ve also had trouble gripping when doing daily chores and balance issues, vision blurriness and even my right ear is causing problems with sensitivity and pain, yet the neurosurgeon keeps sending me for more tests and having me jump through hoops before he will operate. I feel like I have to have limbs falling off for anyone to seem to want to do anything.. So, I’m afraid the nerve damage will be permanent the longer I wait and as I’m losing a lot of mobility as well as quality of life.
It would be helpful to have not only tips but what you suffered as well.?
Thank you so much! 😊

@victoriah Hello and welcome to Connect.

With a disc herniation, there are a few possibilities. It can herniate into the central spinal canal and press into the spinal cord (which was what happened to me) and/or a herniation can push into the space between vertebrae (foramen) where the nerve roots exit the spine to go to the body. That causes predictable pain because of where those nerves travel in the body and pain can be felt anywhere along the path of the nerve. In the case of spinal cord compression, it depends how the cord gets touched as it floats and moves in the spinal fluid with body movements. Herniations cause inflammation and can cause the growth of bone spurs alongside them. I had bone spurs (osteophytes) surrounding the herniated disc material. As this continues to grow, it can cause a tethered spinal cord and compress it which can cause permanent damage as nerve axons in the cord start to die and dissolve. That can show up as a white mottled area within the spinal cord on an MRI. My MRI did not show permanent damage, but there can be myelopathy that does not show up on imaging.

I had pain all over my body (including arms and legs) that seemed somewhat random, and I could change where it was by changing body or neck position, or laying down vs sitting or standing. I had weakness in my arms so that driving or pushing a shopping cart caused extreme fatigue, and I would have to take a nap afterward. I didn't have stenosis in the foramen, but because my C5/C6 had collapsed 50%, the space was smaller and if I side bent my neck, it caused sharp burning pain because the bones were contacting the spinal nerves there. If you read this discussion from the beginning, there is more detail about my symptoms.

I had muscle spasms that were affecting spinal alignment on top of the collapsed disc and causing vertebrae to be independently rotated or tilted slightly which caused lots of muscular headaches on the back of my head. I also have thoracic outlet syndrome (TOS) which causes compression of nerves and blood vessels between my collar bone and rib cage, and this affects rotation of vertebrae because one side of my neck is tighter. This also caused misalignment of my jaw, and that did cause some ear pain when things were misaligned. This was enough to cause vertigo a few times which happened because C1 & C2 were getting rotated and stretching an artery that travels inside them. If there is instability (or listhesis) that causes vertebrae to slip past each other a bit, it can add to the problems. I had 2mm of slipping and experienced intermittent symptoms when it was displaced and out of alignment with uneven gait and bladder urine retention. Those were early signs of dysfunction that would have progressed, as incontinence can result from spinal cord compression, and that can become permanent if decompression surgery is not performed.

In my case, the surgeons (before I came to Mayo) were confused by my leg pain, and all over body pain. That raised red flags to look for other problems as a differential diagnosis for an inflammatory problem like MS. I found medical literature with cases like mine that called this "Funicular Pain" and I found that literature because I looked up that term after seeing it in some medical literature from a surgeon (Jeremy Fogelson) at Mayo. I asked him for help, and had surgery at Mayo that resolved this.

What helped me a lot in understanding all of this was working with a good physical therapist who also did myofascial release to release overly tight tissues and muscles. I had been treating the TOS with her as all the spine related symptoms developed, and I charted the progression on body diagrams.

I also jumped through many hoops only to be told that the surgeon didn't know if surgery would be good or bad in my case. That is when I contacted the surgeon at Mayo, and there were no more hoops... just an answer and an offer for help. I was also sure that I was having funicular pain and I knew that this was understood at Mayo. There are no diagnostic tests for it, and the proof is when decompressing the spinal cord fixes it as it did for me.

Are you considering getting some other surgical opinions? I understand how frustrating that is. There is a right time for surgery, and waiting too long can cause permanent damage. Some surgeons are motivated by money and will operate too soon. Sometimes a person can go years without symptoms, and discs also shrink as part of aging. That affects any damage that may have happened with injuries. For me that took about 20 years after a traffic accident to cause spine deterioration. My surgeon at Mayo was #6 and he was the only one who fully understood my symptoms. If you wanted to seek an opinion at Mayo, it's best to check if they accept your insurance which you can find at this link (or call them)
https://www.mayoclinic.org/patient-visitor-guide/billing-insurance/insurance

If you wanted to contact Mayo to seek an appointment at any campus, you may use this link, and they will call you back.
http://mayocl.in/1mtmR63

Have you have any second or third opinions, etc? It's a big decision, so get as many opinions as you need to make a good educated choice.

Amazing that you were able to fuse wearing the brace! So glad to hear that and also that you got relief and surgery was a success.
I replied to your comment earlier and I do not see my reply so I do not know what happened to that.

I am looking into non-invasive laser surgery for mine as I am concerned just like you about the pain and/or other issues that could be caused with having all kinds of hardware put in. We will see.
I’m still jumping through hoops but hopefully I will get somewhere soon.
Thank you again so much for your lengthy and very informative response to my questions. It is much appreciated.

@victoriah Fusions were done without hardware and patients wore neck braces before the plates were invented. It heals better with a bone graft instead of implants according to my surgeon. During my surgery, the bone disc was very stable. The surgeon tugged on it in the operating room and it was tight. The surfaces were prepared and were rough from grinding while they were spread apart, and when that was released, the bone disc spacer was held tightly. My job as a patient was not to bend or twist my neck until the fusion process began and that took about 3 months. The plates provide the surgeon some peace of mind because they hold everything just as he prepared it.

Laser spine surgery is limited in what it can do, and some procedures can give only temporary relief. I there is a problem inside the central spinal canal, a laser cannot get in there. If a disk has herniated outside of the spine, sometimes the extruded portion can be trimmed off leaving the disc in place. That may be something a laser can do. In that situation, the disc can herniate again. Sometimes a disc collapses and can't be saved as was my case when it collapsed 50%. If the surgeon needs to access the spinal canal, they can do that by removing the damaged disc, and then putting something in its place like a milled donor bone disc or a spacer cage. Sometimes the surgeon needs to see the entire area in the operation. Minimally invasive surgery might have the surgeon operating through a tube inserted into a small incision. It would be a good idea to also get another opinion from a traditional surgeon who doesn't use lasers. Get as many opinions as you need to make an informed decision.
Minimally invasive surgery sounds better, but it isn't right for every situation.

Do you have a description from an MRI that describes the problems with your spine?

I have a herniated disc that is all I know. I have been having pain for years but recently as March started having more neurological problems. Last night the pain in my arms was so bad I woke up and started crying. I saw the images and where the spinal canal looks different from the main nerve being compressed. I’m still in the finding out process and I typically am an advocate and do a lot of research anyways.
I have thought about the possibility of further problems down the road if I only did laser and no actual correction so I still have questions I will be finding out. Although, in Florida there is a place called Duke Spine and supposedly there is more involved in a corrective nature and this has all been a little overwhelming because I have several things on the burner and trying to get everything done so I can get help has proved hard.
Found there is a bulging disc at T6&7 as well but that one is not herniated. This pain radiates in some many ways that I don’t know what’s what anymore.
The neurosurgeon seems to think some of my symptoms are not related to the herniated disc, despite the fact that I am finding evidence that all my symptoms can and are in fact possibilities if not surety with certain herniated discs.
I’m new to finding all I can out so I’m still in the early process but now that I know what is wrong I want to correct before there is anymore possible irreversible damage.
I’m sure you can understand that with what you have been through. (:

@victoriah Since you are in Florida, have you considered the Mayo Clinic campus in Jacksonville? I did not find expertise that compared to what I got from Mayo (Rochester) anywhere else, and I saw 5 spine surgeons before I came to Mayo and they all got it wrong.

Just having a bulging disc does not mean it needs surgery. A disk can bulge for years and be asymptomatic. Operating on anything in the T level is tricky because the lungs are in the way, and many surgeons won't touch that. Sometimes a bulging disc can improve on it's own and I had a T level disc that improved. I had a lot of physical therapy and a PT who does myofascial release and gets everything aligned properly and moving better.

When you described the "main nerve" being compressed on your MRI, are you talking about the spinal cord? I looked up Deuk Spine in Florida and it is a laser surgery place. I try to be polite, but I can tell you that I have watched many videos of surgeons presenting cases at conferences and they were making jokes about a new guy starting a career at one of those places. These are top level ortho and neuro surgeons for spine care. If you are describing a compressed spinal cord, you will need a surgeon who can access that, and you have to either go through a bad disc by removing it or go through bone to get into the spinal canal. Sometimes they can access a very tiny space through the foramen and around a spinal nerve depending on the surgeon, but that approach is very limited. Surgeons have to be very careful to figure out where pain is coming from because it can be caused elsewhere in the body, and then doing spine surgery is an expensive lesson if it didn't fix the problem. There are issues of nerve compression in the body like thoracic outlet syndrome (which I have), and this can confuse a diagnosis by causing overlapping symptoms. There is always a bit of a compromise in doing spine surgery. When levels are fused, spinal motion is lost, and sometimes that doesn't matter much. I am fused at C5/C6 and my head turning is the same as before surgery because C5/C6 doesn't do much of it. That is mostly the job of C1 & C2, with some help from C3 & C4. Artificial discs allow some movement, but it may not be natural. All surgery carries risks, and there is a benefit to risk ratio to be considered.

If you have bony growth in the foramen or a disc herniation there it causes very specific nerves to be painful, and that can be your arm pain if this is the right level. That pain can also be generated from spinal cord compression which is not very specific; it all depends on just what is getting squished in that big bundle.

If you do decide to seek an opinion at any Mayo campus, you may contact them with this link. http://mayocl.in/1mtmR63

Do you have a list of questions that you would ask a spine surgeon at an appointment?

Hi, does anyone know what could be causing tightness with twitches in legs and feet. Also with toe spasms and occassional burning. Been to 2 neurologists and had EMG, brain scan and mri of thoracic and spine done. Doctor said that I do not have neuropathy but 4th and 5th toes are numb and feet feel like I'm walking on lumps. Symptoms getting worse each week.

I can tell you my twitching is caused by nerves dying and hitting other nerves. It’s like a short in your houses wiring and it hits another wire. Spasms for me go along with the neuropathy. I’ve tried all the home remedies but they didn’t help much. When I was put on clonazepam ( it’s like a long acting Valium. ) It’s stopped most of the twitching and stopped all my spasms.
Do yourself a big favor and find a neurologist who specializes in neuropathy. Most physicians know very little about it. Seeing a regular primary physician for neuropathy is like going to a OBGYN physician to have brain surgery.
Even if you have to travel it is important because that’s all they deal with and can really give you a correct diagnosis and treatment plan.
I sure hope this helps.

My initial neurological symptom due to my Covid vaccine injury was muscle spasms in my toes and stiffness in my calf muscles. My initial EMG at 4.5 months post vaccine was essentially normal. But then 2.5 months later my next EMG showed sensory and motor nerve damage and my ANA titer began increasing. The likely explanation is an autoimmune reaction to the vaccine and autoimmune reactions take time to develop. Most vaccine injured patients begin to improve around 8 months. I'm much better now.

Welcome @kwall1, I moved your message to this existing and related discussion:

- Toe twitching/fasciculations?! https://connect.mayoclinic.org/discussion/toe-twitchingfasciculations

I did this so you can tips from the previous posts and connect with members like @jenniferhunter @frattmaa @pacer3702 @ecann32 @healthyme246 and others.