Anyone ever get the diagnosis of cervical spondylotic myelopathy?

I've been diagnosed for having ankylosing spondylitis for 30 years, then stenosis and spondylosis, and am having signs of both cervical radiculopathy and CMS.

I get shooting electrical shock pains traveling from my jaw bone to my thumb, I get muscle twitches (moving enough to see) in my forearms, triceps, and pects, and numbness from time to time (less often).

As for CMS, I recently had a PT isometric test that showed my right arm weaker than my left by 20-61% in 4 of 5 tests (1 of 5 was normal - right was 10% stronger than left, and I'm right handed). I also have Huffmann sign, and my right arm aches. MRIs show bilateral foraminal stenosis and central stenosis at C4/C5 and C5/C6. All the rest of my spine is fused from arthritis (AS).

If that ain't enough, I also have osteoporosis and take Vitamin D, calcium, and have taken Forteo injections for 2 years. So I wonder if they can even do surgery on me.

I take an anti-TNF medication, Remicade, which apparently stopped my auto-fusion but left C4-C6 to wear out, and now I apparently have osteophytes pinching nerves.

Frankly, I'm scared to death.

Anyone have any advice?

You might try a forum search for those conditions, the search link is in my siggy.
It's usually the easiest way to find info/posts on some conditions.

I did that, which led me to this forum, but appreciate the tip.

Jeff,

I can do "scared to death" and raise you to freaked out of my mind!

I was diagnosed with CSM in Feb 2013. I have two levels where the spinal cord is "flattened" and bruised, inverted curvature (which is not normal but "normal" for a messed up neck), congenital central canal stenosis (which is severe from C4-C7) and several herniations and osteophytes.

CSM can get worse as we age. It is better to have the surgery to decompress the spinal cord as early as possible to avoid progression of the problem. CSM can cause permanent damage if the spinal cord is severely compressed and is not surgically fixed.

The questions to ask yourself are 1) Can I learn to live like this? and 2) How much does this affect my daily life?

If you are currently at the point where the stenosis is not "bad enough" and does not compromise the spinal cord surgery can probably wait unless your symptoms are so bad that your quality of life is affected.

Surgery is usually a laminectomy sometimes followed by a fusion which allows more space for the spinal cord.

Since I was diagnosed in Feb of this year my symptoms have escalated dramatically and now I have to wear a hard neck collar until surgery (Sept 19) otherwise I cannot use my right arm.

Are you scheduled for surgery? What type of surgeon have you seen - you should see both neurosurgeons and orthopedic spinal specialists - that way you can get a better picture of what should be done and when. You would be surprised at how different surgeons look at the same MRI and see two totally different things....

Keep me posted. I am here for you - you are not alone.

I am trying to mediate through the fear and panic. Any other ideas?

No, I cannot continue like I have been doing. The pain alone has driven me to stop playing golf, stop fishing and boating, stop attending Boy Scouts, and even now has driven me to not want to go out to eat with my family. I can barely manage to work, then come home and crash each day. I still work full time, but it is becoming harder and harder to make it through the day. Neck pain turns into a bad headache, the kind which feels like someone is stabbing you in the eyeball.

My right arm is really beginning to bother me. It hurts all the time now, in all parts except not in my bicep for whatever reason. My right hand feels like a bad case of writer's cramp, except I have done no writing. Handwriting is getting sloppy too. Right arm is definitely weaker.

I have been seen by a neurosurgeon and orthopedic spine surgeon about 15 months ago, and both noted stenosis and symptoms, but neither saw any signs of myelopathy at the time, though the ortho did note a positive Hoffmann sign (reflex issue - with the right arm, of course).

I'm going to the director of neurosurgery at a large teaching medical school/university in 3 weeks for evaluation. He's supposed to be the best neurosurgeon/spine surgeon at the school, and on different doctor ratings, he rates 4/4 and 5/5 stars. The only complaint is the amount of time it takes to see him, which for me will be a month. I'm hopeful he can tell me based on MRI and x-rays what I have, and the game plan to fix it. I'm ready for surgery right now, because I can tell my right arm is getting worse, and I know that if I don't get something done, things will only continue to worsen. I don't like surgery, but I also want to stay alive and function, and I'm sick of being in pain every night. Scared to death, yes, out of my mind, yes, but also committed to getting this fixed, as long as there is a good chance of success.

As for how to deal with the fear, I talk to friends and family. In addition, I'm a man of faith, so that helps especially in uncertain times like this.

Be not afraid you know where it is eminating from
And remember a well informed problem
specific as yours it be last to turn to
Remember it is your body only you know
is it worthy of seeking surgery there are alternitives
Many other options and more than 1 way
of doing things
Many prayers
Do not be afraid
Believe from your being
Things are exactly how it
they are suppose to be
Believe

All will be well

Someone who cares

[QUOTE=jeffntate;1014206]No, I cannot continue like I have been doing. The pain alone has driven me to stop playing golf, stop fishing and boating, stop attending Boy Scouts, and even now has driven me to not want to go out to eat with my family. I can barely manage to work, then come home and crash each day. I still work full time, but it is becoming harder and harder to make it through the day. Neck pain turns into a bad headache, the kind which feels like someone is stabbing you in the eyeball.

My right arm is really beginning to bother me. It hurts all the time now, in all parts except not in my bicep for whatever reason. My right hand feels like a bad case of writer's cramp, except I have done no writing. Handwriting is getting sloppy too. Right arm is definitely weaker.



I have been seen by a neurosurgeon and orthopedic spine surgeon about 15 months ago, and both noted stenosis and symptoms, but neither saw any signs of myelopathy at the time, though the ortho did note a positive Hoffmann sign (reflex issue - with the right arm, of course).

I am 3 weeks out from an ACDF at C 4-5 & removal of hardware of previous ACDF of C 6-7. I went 10 years between surgeries.I had recently started to have arm & leg weakness and jerking in my writing hand and tremors. Went to neurologist who scared the begeezuz out of me. I flunked my neuro exam and had a rather intense clonus and hyperreflexia in my right leg and foot. Diagnosed with myelopathy. Neuro told me if he gave me an anti-spam med like Baclofen that I would most likely not be able to stand because the spasms were the only thing keeping standing. Talk about being freaked out!

I hightailed it to my neurosurgeon who treated me with steroids until surgery could be done. In my case, I waited to have surgery until I had symptoms, but think I pushed it a little too close. I am having a good recovery and guess I will find out in a few months how much function will be returned.

I understand being anxious, especially with your ankylosis diagnosis. Talk with your doctor about your concerns and make an informed decision.

What do you mean by pushing it too close? What was your first and second surgeries?

I had symptoms for a longtime and ignored them until the damage to my nerves may be irreversible. I shouldn't have waited so long, especially when I was advised to have the surgery 10 years ago. I'm a very young appearing 52 year old, but my insides appear much older. The neurologist who saw me said that they only see this level of nerve damage in 80 year olds, which prompted me to have the surgery.

I had severe foraminal narrowing at C4-5 and stenosis, as well as significant signs of nerve damage, so I had an anterior fusion at that level to relieve the pressure on those nerves and they removed the hardware from my previous ACDF on C6-7. I have severe degenerative disc disease throughout my spine and had a fusion in the lumbar area as well.

I also work full-time and have chronic pain, but I have a great team of doctors. I had to kiss a few frogs along the way,but finally found the right ones. I was disabled for 2 years, but went back to work as a nurse 8 years ago with the help of pain management.