Toe twitching/fasciculations?!

@ecann32 Hello and welcome to Connect. I am a spine surgery patient and you said several things that caught my attention as symptoms that can be related to a spine issue. Hopefully they will examine the entire spine with imaging.

Muscle twitching and jumping can be caused by compression of a nerve and it happened to me because my spinal cord was compressed due to a collapsed disc and bone spurs in my neck that were pushing into it. I had muscles jumping in my thigh and calf and twitching in my feet. My first symptoms of cervical stenosis was actually a pain in my ankle, and in the beginning, I could turn that pain on and off by changing the position of my neck and head.

I also had one sided headaches on the back of my head. Those were happening because muscle spasms were twisting or tilting my cervical vertebrae independently. When that happens, the muscles on one side get stretched and start to complain. I had a slight bit of slipping of one vertebra backwards over the one below it which would also add to the stretching of muscles. I have also experienced vertigo that came on quite suddenly because of this slight misalignment when I looked upward at a time when things were not positioned correctly. Literally, I didn't have my head on straight. The vertigo was bad enough that I fell backward. My physical therapist was able to help by realigning my neck.

It's OK to be scared, but please don't assume the worst. I know at this stage, you don't have information, and that's OK. Just think about how you feel today and that you are here and managing your day. I went to Mayo for my spine surgery, and on my first day there while waiting for my neurology testing, I was talking to another patient and his wife. He had ALS, and I could see muscles jumping spontaneously in his arm with no pattern. It was very random. I had worried about ALS too, but what was different was that the pattern of my muscles that were jumping was for specific muscles and it was consistent and repeatable. It wasn't random and all over. I hope that can ease your mind a bit while you wait for results. That is also consistent with compressing a specific nerve that supplies those muscles. The tricky thing is when it is the spinal cord that gets compressed because you don't know what will be affected in that big bundle. The spinal cord floats in the fluid inside the spinal canal, so the things that are affected can change depending on what is getting touched. If a nerve gets compressed after it has branched off of the spinal cord, it is very specific and identifiable. This is what the nerve testing evaluates.

I had a whiplash about 20 years before my spine was in need of surgery. I know that may be scary to hear too. What happens is small cracks can form in the discs from trauma, and in time with aging the discs dry out a little bit and those cracks can open up causing a herniation. I had a bulging disc for several years. Once the jelly like material inside had spilled out, bone spurs grew next to the disc. I was a patient who was afraid of surgery, but I was surprised that it was not as bad as I expected it to be. My recovery from a broken ankle and those surgeries were much more painful and for a longer period of time than spine surgery. I also had an excellent surgeon. Pick the very best that you can if you need spine surgery.

Take a deep breath. You will get through this and I'm here to hold your hand if you need me.

How soon are you scheduled for your imaging tests? Would you keep in touch and let me know how you are doing?

Hi @ecann32, I add my welcome to Jennifer's. Medical doctors do not provide diagnosis on this forum. It's a patient network sharing experiences and giving and getting support. Fellow members @lorirenee1 @schnufflebug @lauraj155 have mentioned toe twitching in the past and may be able to add their experiences.

You may also be interested in this related discussion:
- Benign fasciculation syndrome (BFS): https://connect.mayoclinic.org/discussion/benign-muscular-fasciculation/

I know you're worried, but I urge you not to jump to worst case scenario like a tumor or neurological disorder. You are wise to seek medical follow-up as you are doing. Clinicians will first rule out the simple possible causes, of which there are potentially many. Have less serious causes like poor circulation, muscle cramping, nutrient deficiency etc been ruled out?

Wow, Jennifer, this is really interesting. Was your neck surgery ACDF (fusion) or something else?

@martinaston Thanks for asking. Yes, I had an ACDF (anterior cervical discectomy and fusion) of the C5/C6 disc. I asked to not have hardware placed on my spine, and my Mayo neurosurgeon did that for me because I agreed to stay in a neck brace for 3 months while it fused and he trusted me. It was worth it. Everything fused beautifully and I never have to worry about possible hardware complications or failures. He said he could do this because it was a single level fusion. All I had was a donor bone spacer. If I had chosen a bone graft from my own hip, It could have caused pain the rest of my life, and I didn't want something like that to influence my balance when I am elderly. Although this is a big surgery, it was not as bad as I had imagined. I had worked a lot at overcoming my fears. This surgery was life changing for me and a very good thing for me to regain normal functioning.

Another interesting fact was that, it was only at Mayo were my weird symptoms were understood to be spine related. I had pains all over my body and in my legs too, and an uneven gait when walking that all were caused by cervical spinal cord compression. I had found medical literature with a case similar to mine right before I came to Mayo and I came in asking questions about that as a possibility. I sent that literature in with my records when I requested an appointment. I was right about it, but it is something that there is no test to confirm, and the confirmation is that the surgery resolves the symptoms. My imaging demonstrated cord compression. There was no guessing about that.

It is all very interesting the way the body works. Are you a spine patient and contemplating potential surgery, or just have an interest in spine surgeries?

Wow, thank you. I didn't want to send this discussion off onto a different tangent from the original poster's question, but yes -- I have a cervical spine MRI and might consider surgery. However, mine does not show cord compression. It's other stuff going on at C5-C6 instead. Thank you for the information.

@martinaston You are welcome. There are lots of patients talking about spine surgery on Connect in other discussions. If you use the search box at the top, you can search a term like ACDF and find other conversations about patient experiences with spine surgery. I'm glad you do not have spinal cord compression. Issues with compression of the nerve roots can also be very painful and debilitating. We are all a bit different in what is affected in the spine and it's relationship to what level the condition affects and what treatment is right for us. Spine surgery is a big step when you need to do that, so make sure you choose an excellent surgeon because you cannot undo the effects of surgery. Sometimes there are revision surgeries if something goes wrong, but it's better to get it right the first time and make sure to seek enough opinions to be able to choose wisely.

If you do want to seek an opinion for treatment at any of the Mayo Clinic Campuses, you make use this link.
http://mayocl.in/1mtmR63
I had some trouble finding a surgeon who was willing to help me, and I wish I had come to Mayo first.
Would Mayo be on your list of possible facilities if you are considering spine surgery?

Thank you Jennifer and Colleen! And sorry about the delay, we have been dealing with a Covid outbreak in my school, so there is that...
It is strange to get my "hopes up" about this being a back injury, but of course I am doing just that. I visited a second GP who says we should wait for the MRI results, but he was wondering about my back as well. I will say this: my twitching/toe movements have really settled down during the day. BUT I have noticed that they come out in the evening, especially when I try to do light exercise. For example, I jumped on a mini trampoline for 12 minutes and after that, my toes were moving once again like they were part of a player piano. I was upset that the twitching had flared up again, but I wonder if that might be more of an indication that this condition does have something to do with alignment. Strange thing is, I do not have a history of back injury. I have had some problems with sciatica in the distant past, actually been laid up a few times in bad, last time being 10myears ago. And some nerve pain tends to flare up when I carry heavy groceries, etc., but nothing out of the ordinary. My neck has also gotten "stuck" in a certain position occasionally and hurts- this after a minor injury when I was a teenager- slipped down the stairs and could not move my neck the next day.
So, my toes are twitching now as well after some minor core exercises. I am still worried about my follow up appointment for the MRI's, it has been over a week now and I don't have the follow up until Monday. I'm hoping no news is good news. Yes Jennifer, I would love to correspond further about this issue, and touch base. Thank you for such a detailed response; this is just a strange symptom. Did the case study you found also refer to moving toes? Thx to you and anyone else who might pipe in, Erika

It has now been about six weeks of this strangeness, thankfully no sensation of weakness.

I contacted Mayo about a orthopedic consult and was told they were not taking new cases. It was very disappointing and the call not very professional. How did you get a consult? Thank you

My toes tend to cramp and bend and stay like that until I do a lot of massage on each toe. It’s usually one foot at a time. Is this similar ?