Cervical Spondylotic Myelopathy (CMS)
 

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.

Do your homework
 

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.

What symptoms and signs of nerve damage?

X-ray of my neck

Attachment 7687

MRI of my neck

Attachment 7688]

[QUOTE=jeffntate;1015044]What symptoms and signs of nerve damage?[/QUOTE

I had severe weakness in my legs and hands. My right hand had a mind of it's own and would jerk to the side if I tried to write or use a mouse (called chorea form movement). I had hyperreflexia(hyperactive reflexes) which is a sure sign of nerve damage. When they hit my knee with a hammer it flew up almost kicking the doctor, and severeclonus in my right ankle. These are terms you could look up and get a better definition of, but they are all hallmark signs of nerve damage. Also, I couldn't do the tandem walkwithout falling (same test they give for drunk drivers, walking heel toe).

My neurologist was very concerned about me having this level of nerve dysfunction and was surprised at how young I was to be presenting with these neuro deficits.

Surgery was the only avenue of treatment to stop the progression of symptoms.

Even to an untrained eye, you definitely have some encroachment on the spinal cord and stenosis. There are some new minimally invasive procedures which may work. MILD procedure is the newest one.

Do your research, talk to your doctor and get second opinion on course of treatment. Good luck.

That all sounds much more severe than my symptoms. I have something called a Hoffmann side and "upper extremity weakness consistent with right C5/C6" and some right hand pain. PT testing showed my right arm is 20-60% weaker than my left, though being right handed, it should be 10% stronger. My right hand hurts all the time, like I have bad writer's cramp, but I haven't written. Maybe that all means though I've got some impingement, serious damage hasn't happened yet, and some surgery now can prevent further issues and maybe even reverse the right arm problem?

HELP - very worried.

I've started dropping cups and knocking things over with my weak arm, and anytime I do anything significant with it, it hurts like the devil for hours.

Dubious, don't know if you were responding to me or not, but I am just 4 weeks into my recovery from an ACDF.

Time to see a neurosurgeon. It sounds like your symptoms are progressing. Good luck!

My appointment is Wednesday. I hope to leave with a plan to solve my problems. Wish me luck!

Hi BelleLea,

Perhaps I misunderstood your post. It sounded like you were having worsening symptoms following your recent surgery. Perhaps not, as you suggest. However if I did read that correctly and you are worsening since your recent surgery, then what I related would make some sense...getting a contrast and on-contrast MRI to rule out recurrent herniation. If all is well, then pardon me and disregard!

Result of appointment

I have severe central stenosis and spinal cord compression at C4/C5, so am now scheduled for a 2 level laminectomy with posterior fusion using instrumentation and cadaver bone. Diagnosed with both myelopathy and radiculopathy. Surgery in about a month. After surgery my spine will be 100% fused due to a combination of surgical fusion from C4-C6 and the auto-fusion from 30 years of ankylosing spondylitis. Very worried about ability to continue to work full time, ability to drive a car, and ability to do things with my family like fishing and some golfing after recovery due to the complete fusion.

Any and all advice or personal accounts is very, very much appreciated!

Jeff

Jeff,

Sep 19 I had posterior fusion of C3-7 with laminectomies. I thought I had lower back trouble until I started losing the use of my right arm, dropping things and couldn't raise my arms or lift my arms etc...

I am currently 4 weeks out and my life has changed dramatically.

I am 49 and I have spent over 30 + years with lower back, leg, feet, hip etc pain. In 2010 things turned for the worse and my arms and legs became severely spastic with lots of other spinal cord problems.

Currently I have no - none - zero - pain from my waist down....I can walk up right and I am still in total shock at how incredible my surgical out come was. My surgery was for my NECK - and a severely compressed spinal cord.

The doctor's did not say anything about my legs getting better or coming out of surgery with no pain . So I am living a miracle - I just can't believe it.

I am still healing with my neck and my arms are sore but that is to be expected.

I will have my 5 week Xrays at the end of this week and will let you know how it goes.

I was very worried about having any surgery on my neck prior to the surgery and now I just can't believe it.

I will keep you in my prayers.

Wow. That is the most inspiring story I've heard about so far. I'm so thrilled and happy for you, and bless you for sharing with me! You absolutely made my day! Thanks also for the prayers. I do believe in them.

Jeff

How is the first day of surgery after you wake up? Horrible pain? Excruciating? Enough to scream or vomit? I'd prefer an honest answer.

Jeff,

to be honest I don't remember a lot about the first day or so following surgery.

I have been in pain management since 1998 due to 9 major spinal surgeries since I was 12 - I am now 49. Lots of other stuff like arachnoiditis, severe scoliosis and the fact that I am an extreme athlete....yeah I guess you might consider me a masochist of sorts....anyway- I have been on about 100 mg/day of long acting narcotics for over 5 years - which makes me narcotic tolerant....

I am bringing this up because following my surgery this team and hospital did not have a Pain Mgmt doctor available until the second day following my surgery. This meant that ICU could only give me medications like they would give a person who was not narcotic tolerant.....

Therefore - until the Pain Mgmt doctor showed up and kinda gave the ICU team one of those - what the hell is wrong with you kind of speeches (or so my family told me) - I was kind of on my own regarding pain.

I have learned to meditate throughout the years and although I never believed in it and always thought that meditation was for "those types" of people.....it truly saved my life during my 1.5 days in ICU.

I even had a physical therapist tell me how impressed she was when I told her that I needed a few minutes to meditate to get my pain under control and then we were able to do the exercises.....

So make damned sure if you are narcotic tolerant that you know what the plan is immediately after surgery and that you know - verbally how much and what they are going to be giving you....

Usually you are on a pain pump for the first few days following the surgery and you press a button when you need pain meds....they make sure you are comfortable - honestly.

I had surgery Thursday and went home Sunday - I would have gone home Sat or even Friday except for the ICU debacle.

Trust in The Lord. That is all you need. Everything else is meaningless. Trust in God and all His helpers - They will get you through.

Kelli

Jeff,

I am at week five after a fusion and laminoplasty of C5-T1 done posteriorly and each day I wake up I am amazed.

I wish I could talk to you via email or something. Is that possible?

In my lifetime I would never have even thought that my lower back issues and my ability to walk upright or sit or lay down at night or straighten out my legs etc....so many things that I and many, many doctors from many, many disciplines related to my arachnoiditis, my severe scoliosis, my 9 major lumbar surgeries (failed surgery syndrome I guess), severe stenosis and on and on and on....

Now I can lay down at night and sleep - no kidding. This is a major. I get up in the morning and walk around - without thinking about crawling to the frig to get an ice pack and how long it will take to get my legs to straighten out enough to allow me to get to my car to work etc...

I can sit - I can sit for hours....prior to the surgery I could sit for about 10 minutes before all hell would break lose and I would be eating narcotics so I could finish work and not have to go home for the day.

I could go on and on - about how my life has changed and now I am weaning off a very high daily dose of long acting narcotics - I am not sure how to go about doing this - but believe me - I can do it and will figure it out.

Do not worry about the pain after surgery - everyone has post surgical pain - everyone has to cope and most people don't feel much due to the narcotics.

If you have any other questions please feel free to ask me - I will check back periodically to see if you need me.

I will be praying for you.

K

Hey, glad to find this forum.
I had just my ACDF about 10 days ago and glad to have all pain in my neck was totally gone.but my legs still unsteady when walking and still got tingling sensation in my both hand palms. I guess it would take time to heal the nerve damages.

I am still hoping for speedy recovery as i am still very young for this kind of surgery...

Hi Choco, Welcome.

Yeah, don't rush things; nerves take much longer to heal than other tissue, and I assume your spine still has to fuse, and that can take 6-12 months in some cases.

Relax and try to enjoy your recuperation. If it hurts, don't do it.

Best wishes,

Doc