Avatar universal

cervical herniations and muscle fasciculations

My history: In 2012 I had a slap tear in my shoulder. The symptoms were immediate and it was a pulling injury. At the time my PT told me he was concerned about the ROM in my neck, but I didn't have much neck pain. I had 2 serious accidents as a teen (put my head through a windshield and got hit by a car while walking), but there was never any spinal fractures, just whiplash, so I was used to feeling stiff in my neck. In June 2013 I was working (I have a physically demanding job for a utility company) and strained my neck and shoulder. At first we thought I had 're-torn my shoulder, because I had weakness and pain in that arm. My surgeon ordered gets, but the shoulder was sound. In the meantime, the symptoms were getting worse. I had weakness in both arms, worse on the right. My legs felt weak and I developed muscle twitching all over. There was never a real pattern to the fasciculations, but it is always the same muscle groups. I also had a few episodes of lightheadedness. I saw my primary and he referred me to a neurologist. The Neuro ordered at brain CT, an EMG and MRI of my cervical spine. Also had blood work done. The CT was normal. The EMG was positive with abnormal findings. The MRI showed 2 cervical herniations at c5/c6/c7 with anarrowing of where the nerve roots exit as well as possible stenosis.
However the neurologist didn't think that those findings would be cause for the muscle fasciculations. He thinks I have a stretched braxial plexus nerve. However that didn't explain the neurological findings in my feet and left side. He didn't want me to do anything except rest. Well 6 months of rest later and the symptoms were not better. They were progressing. I have cramping in my hands and my ring finger isn't functioning well. The weakness is distributed through my arms and legs (worse in the arms), the fasciculations are not as bad, but still happen daily. I started to think I needed a second opinion. The neurologist labeled me with BFS. I notice on my bad days, the fasciculations increase along with the other symptoms. He insists though ALS or MS are unlikely. So I went to get an opinion of a spine specialist. He looked at all the tests and immediately referred me to a surgeon. He feels all the symptoms are definitely from the cervical damage. Recently I've had a few bouts or urinary urgency. I saw a neurosurgeon and he agreed with the spine specialist and believes the fasciculations are a symptom of the cervical issues as well. He ordered new images and I see him again this week to discuss surgical procedures. He thinks time is of the essence at this point to get the pressure off the cord. He diagnosed me with cervical herniations with radiculopathy and myelopathy and stenosis.
My question is this.....
Why is the original neurologist not recognizing what all these other doctors are? Has anyone here had the same problems with muscle fasciculations? There was a time when this first started that I thought I had some terrible neurological disease. I was scared to death. Now I have all these other doctors saying that all the symptoms are due to my neck. Is my neurologist inept? Is he trying to keep me under his care forever instead of referring me for surgery? When I told him I was going to see the neurosurgeon, he said that the one I am seeing is very good and also conservative. Yet the minute he (the surgeon) saw my MRI he immediately said surgery was necessary. I honestly believe the fasciculations are due to the cervical injury, but this neurologist disagreed. Looks like I am going under theknife.... I just hope the delay from the neurologist didn't cause permanent damage to the nerves....
10 Responses
620923 tn?1452915648

  Hi and welcome to the Spinal Cord C/D forum.

May I ask, did you get copies of your MRI and the report? If not, contact the facility that did the studies and get copies...going forward always ask for copies for yourself as this makes getting a 2nd opinion easier....and you do not have to pay your Dr or wait for copies....

Not sure  your NL is inept.....but sometimes they do not want to suggest surgery as it is your spinal cord and can be risky.....and a surgeon will suggest surgery as that is how they get paid....so, asking the benefits and risks is important....and get another NS's opinion....

Keep us posted on a surgery date <3
Avatar universal
Hello! Thanks for the reply :) I did get copies and the report of the first MRI and just recently had the follow up MRI done. I have the actual disc, but am waiting on the report. The neurologist I was seeing for the last year originally ordered the first one and it showed a few issues including the intervertabral disc herniations and narrowing of root opening. The funny part is, he seemed so unconcerned about that, and kept focusing on the stretched nerve and muscle fasciculations, that we never had an in depth discussion about the cervical problems because he was insisting that the symptoms wouldn't be due to the cervical problems. The spine specialist was referred to me by his office, because they claimed that this specialist is one of the most conservative in my area (his assistant also said the same thing), so when he (the spine Dr )immediately referred me to the surgeon, I knew he was doing it for the right reasons. He could have just kept me under his care for pain management and PT....He didn't have anything to gain by referring me as a surgical candidate. He isn't a surgeon and isn't affiliated with the surgeon I have chose.... I've also been told that my surgeon is one of the more conservative and will not perform surgery unless it is necessary. The spinal specialist was very pleased with the surgeon I chose and confirmed what a few others had said....that he will NOT do surgery unless it's absolutely necessary. I have spent the last 14 months thinking I had some neurological disease, instead of having a thorough understanding of the condition of my neck. Every symptom I have, other than the muscle fasciculations, are classic indicators of spinal injury. And now I have 2 spine doctors claiming the fasciculations are mist certainly do to the spinal myelopathy NOT benign fasciculation syndrome..... I can't help but think, that if he had pursued this, I may not have had an entire year of uncertainty and hopefully the nerve damage isn't permanent.
I am just dumbfounded by the neurologists lack of knowledge.... When I received an actual diagnosis from the spine specialist, I naturally came home and looked up the definition and symptoms and I should have my picture next to the definition of cervical myelopathy.... haha :)
Moral of the story, is if you feel like something is not right, get a second opinion right away. I fear permanent damage because we have waited so long. I hope the surgery relieves at least SOME of these symptoms, so I can get my life back. I'm a 35 year old mother of 3 and I would like to get back to work.....
Avatar universal
As an afterthought.... Every neurosurgeon I have called, to ask if they will give me a second opinion, states that if the Surgeon I am seeing is stating surgery is required, I will not hear anything different from any other neurosurgeon. Right now, time is NOT on my side, because if I ever want to return to my job, I must return before 2 years from the injury date. Which only leaves me with 8 months to have surgery, recover and get off of light duty or I lose my seniority. These neurosurgeons all book 3-6 months out. Considering who theneurosurgeon is, and what every single nurse, doctor and specialist I have seen, say he is one of the best, I fear I am wasting precious time trying to see even more neurosurgeons..... Thoughts on that are appreciated :)
620923 tn?1452915648

  Wow that is a short time frame to recover and go back to work.....

Well I went to see 3 NS's b4 I decided on which one I felt was right for me....and I did get different opinions from each, the thing is I did not tell them about the other NS's I saw....

I know it can take time to get into see these Drs...and you are in a time crunch, but I really would like the opinion of more then one Dr saying surgery is a viable option...as I mentioned it is your spinal cord....

I had brain surgery, which also involved my spinal cord...which is why I am so cautious....you have to go with your gut and if you feel this is the right Dr for you.....
Avatar universal
Good grief.... And here I am complaining about a little cervical herniation!! How has your recovery been Selma?? You must have a ton of patience to want to read about other people's sob stories, while going through your own ordeal.... <3
I never in a trillion years would have considered spinal surgery when this all started, but after living with these symptoms and limitations for over a year, and recognizing that they will only progress, I really see no other option. I don't want to become incontinent at the ripe old age of 40.... Haha. I am still young and can't bear the thought of the symptoms getting worse. It's such a crap shoot. Damned if you do and damned if you don't.....
I definitely think this surgeon is at the top of his game. I haven't met too many surgeons that have great bedside manner. A friend of mine who happens to be a nurse, told me at this point, I should find a surgeon that is the best in his field and not try to find one that I think is nice or makes me feel warm and fuzzy. The surgeon I've chosen is the lead neurosurgeon at one of the best hospitals in our area, he teaches at the university and handles big names for our national football league. He was the surgeon that worked on Kevin Everett from The Bills when he was paralyzed. Kevin Everett can walk today.....
Not that I would base this decision on the fact that he works on football players.... lol.. I actually just found out that he was the surgeon that performed that surgery for Everett.  Frankly I could care less who his patients are.... It just shows how experienced he is. I'm confident with him.
I am not however, comfortable with the neurologist that I was with for the last year. Every doctor I have seen since, gets a puzzled look when I question why it took him so long to recognize that the symptoms are due to the cervical herniations and myelopathy. He thinks I have BFS....lol. I have the opinions of 3 other spine doctors as well as my primary that this is the only option, short of living like this for the rest of my life. Even my employer is confused about how it's been handled. Thankfully I am lucky and my employer is self insured, so I am not dealing with an insurance company to get approved for all this. They have been supportive every step along the way and have never denied coverage of anything. I am grateful for that.... But rules are rules and I have 11 years vested into my seniority and they want me to return instead of collecting comp forever....
Honestly, I question if I will ever be able to return to my job.... Those are questions I will be asking the surgeon. I hope so.... If a football player can return after spine surgery, I don't see why I can't.... But all the doctors from my primary to the chiropractor, think it's a bad idea. Who knows... My employer might not want to take on the liability anyway.
The uncertainty of all of this, is the worst part of it all.....
620923 tn?1452915648

  No worries...when it affects us, it is a huge deal...I understand that...and we all have a right to vent, that is why this forum is here...and for others that have gone thru something similar to chat with others makes this work as we need others that can relate and understand  how we feel.

My surgery was 5 yrs ago....and I do have other issues/conditions as well so recovery was slow....and nerves healing can take up to 2 yrs and with someone that heals slower then most....well you can guess...it took some time.....but I am so much better then I was b4 surgery and even right after....so I know that it can take time and we have to be patient....

You are so right, but  you need to be confident in their ability and how they can  treat your condition....I was lucky to have a Dr with a good personality as well....but that is not always the case.

I know how frustrated you are....I started seeing Drs for my issues/symptoms when I was a young child....and was not DX'd until I was 48...surgery at 49.....so a lifetime of trying to find a Dr that understood and could give me answers....keeping in mind a MRI was needed to DX this condition and they were not available when I first started seeking help.

  I went thru the same thing had 15 yrs in and was let go....I have not worked since my surgery and am looking at how to earn money from home as I know I can still have bad  days and can not be a reliable associate...so, I am ok with that ....my path has changed and I must change with it or be miserable...I choose to change and be happy....
Avatar universal
Wow.... That is a lifetime.....it's so great that you have such a positive attitude about it. You must have a great support network. It does help to vent and discuss things with others that can relate. Thankfully I have a relative that happens to be a nurse and went through something very similar to what I'm dealing with, so she has helped me understand what is happening.
And you are so right..... We can only try to stay positive and look at the bright side (is there one??? Haha). I know things could be a lot worse.
When my symptoms got really bad, the doctors started running tests to look for MS or ALS, and for a few months I honestly thought they were going to find something. My symptoms were very similar to how those diseases present themselves. I can only be thankful, it wasn't something like that.....
Thanks for letting me vent. :)
620923 tn?1452915648

  Once I got a DX, my support came from this site in the Chiari forum....they gave me so much, I want to give back and why I am still here....I know how it helped me...

  Yeah I had testing to MS, lymes and lupus....all those that have similar symptoms...had my heart checked out....

Hey anytime...I am usually around : )
Avatar universal
Ha.... Yeah, that was a fun time waiting for MS /ALS  results... ;) ugh!! I still have those thoughts and fears in the back of my mind.... Wondering if it's too soon to actually confirm something..... Even though I now know that the symptoms are from the myelopathy.... It was overwhelming.....
My heart goes out to anyone that is suffering from those things.... I only had a taste and it gave me profound respect for people living with something like that. The fasciculations were enough to drive me crazy!!!
620923 tn?1452915648

  It can be scary...when I was pregnant with my DD I was told one of the tests indicated an abnormal bone structure or something along those lines and asked if I wanted to do an amniocentesis..which could cause a loss of the pregnancy....I decided against it, and when they did further testing nothing showed, and she was fine....I really feel those abnormal results were bcuz of me and my issues that were not known at the time....

Too many tests and not enuff right answers can drive us crazy...so we have to have faith , keep positive and move forward the best we can.
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