Possible myelomalacia?

[Karen Johnston]

Dear Docs, This is a little complicated, but I will try to make it short.Two years ago, I had a laminectomy with titanium and alograft implant from C4 through C6. Two days later, I fell, stripping the implant screws and breaking C7 where the bottom screws were anchored. Repair involved a longer implant, from C3 through T1.  After rehab, MRI films showed that the top screws had penetrated through the bone into the canal and there was a permanent leison at the C7 level. Recovery has been slow with residual pain in my neck, shoulders and arms with parathesia and decreased fine motor in my right hand. My true problem is that there has been a dramatic atrophy in my gluteal muscles and bilateral legs. The pain in my legs is intense and I am being treated by a pain clinic with Oxycontin 60mg bid, Klonopin 0.5 tid and oxycodone for breakthrough. EMGs done in June suggest abnormalities but I don't know to what extent. Bilateral patellar reflexes show +4 hyperreflexive. I recently completed epidural injections with no effect. Is it possible that myelomalacia may be developing from the cervical compression of the screws (of course, osteophytes have covered the tips by now)? I can't seem to build any muscle mass in my legs and I fear that if the atrophy continues, I will lose more function. Does this pain accompany atrophy?  Thanks in advance! Karen

[CCF Neuro[P] MD, RPS]

Dear Karen:

We have had good results from any of our neurosurgeons.  Dr. Hahn is very good, but any of them are good.  You can call 1-800-CCF-CARE to set up an appointment.

Sincerely,

CCF Neuro MD

[Karen, once more please??]

Dear Doctor,
   My PCP has written a referral to Cleveland and I was hoping to get some information on which doctor on staff might have the experience and interest in this type of instrumentation and complications.  How do I go about finding the appropriate physician at Cleveland in order to begin to make the insurance journey to see him/her?  By the way, I am delighted to have the opportuntity to be assessed by anyone in this renown facility and would never had this chance had it not been for your forum...please know how important this site is to us!!  Karen Johnston

[Karen]

Guess What?  I'm so excited! I got the referral to Cleveland!!!  Have any ideas who would be the best doctor to look at this?  Any help would be appreciated...my thanks again, Karen

[CCF Neuro[P] MD,RPS]

your welcome.

CCF Neuro MD

[Karen]

My thanks again..

[CCF Neuro[P] MD, RPS]

Dear Karen:

We hope and wish the best for you.

CCF Neuro MD

[CCF Neuro[P] MD, RPS]

thanks for your comments.

CCF Neuro MD

[Laura]

Hi Karen:
I am also an RN with the same type of symptoms as yours, but with a little different cause, I suffered a spinal cord injury from a fall.  I am currently on disability, and am back in school working on a second career.  I was just curious what type of "sedentary" work you plan to do as an RN, especially with the additional problem of having loss of hand function.  When I came up for disability review a couple of years after my accident, the SS neurologist originally said he was going to recommend a sedentary job in nursing, and I hit the roof, especially since at that point I had already lost my job and started back in school.  I told him to go grab an IV set, and let me demonstrate my loss of hand function on him, since he didn't seem to think it was significant, LOL (I really did say that!)  At that point even writing was difficult but that has improved some.  Anyways, he ended up coming through and recommending a career change.  I am pretty much committed to my career now, especially since I graduate in less than a year, but I am still curious what kind of work you plan to do as a nurse.  If you get a chance, and would like to chat, send me an e-mail.
Laura
***@****

[Karen]

Well, here's the bad news...time to look for another neurologist. And Doctor, you are right..another neurosurgeon too. Since I was so optimistic a month ago about the possibility that the increasing symptoms may had been related to the sacral changes seen on myleogram in June 99, I had the lumbar epidural injections...but as I stated there were no results and the pain is getting worse. I actually lost more weight! (Over 37 lbs. in the past year. I was hoping to gain some back with the steroids) Went to the neurologist this am and since I was in much poorer condition, he was confused by the change in my attitude (not so optimistic)and distinctly gave me the impession he thinks it's all emotional. He ordered MRI with contrast, blood work, SSEP's and a PT consult for gait training with walking device, but made it clear he was placating me. He said he saw no changes in my legs, but has never measured them. Told me that myleogram results from June 99 showed normal postoperative changes and that the neurosurgeon saw nothing sugical. I don't blame him..I wouldn't want to attempt to remove ostephyte-covered screws two years after insertion either! I guess I have some serious thinking to do now. Thanks everyone, for your comments.  Karen

[Karen]

Instrumentation was xrayed this afternoon..all in place with some post operative changes described as arthritis.  By the way, I am in almost monthly contact with both the neurosurgeon and neurologist, who is suggesting a return to work (sedentary, of course!). Seeing neurologist I have confidence in tomorrow (in fact he suggested a Cleveland consult, but private insurance is a stubbling block)and will discuss yet another neurosurgical opinion. The current neurosurgeon says the cervical area is too 'fragile' now to consider surgery (after 22 months!) ...thanks so much doctor!  Although I am disheartened by the prospect of irreversibility, I will proceed to do everything I can to fight for what's left. I truly appreciate your 'online' opinion, knowing how difficult it must be to render without assessment. Karen (RN)

[Dorothy to Doctor]

How do you know if the hardware has come loose?  If this a common thing to happen?

[dorothy]

Karen I have some questions for you.  Could you please email me at ***@****.  Thanks

[CCF Neuro[P] MD, RPS]

Dear Karen Johnson:

I am very sorry to hear about your condition.  It does sound like what has happened stemmed from your fall.  The increased reflexes, loss of muscle mass, and pain are likely the direct result from the sequalae from your fall and new surgery.  However, I must say I might be wrong as I haven't seen the films. What does your neurosurgeon say?  Neurologist?  I would talk to them and see what they say.  It sounds like surgery may be indicated to try and relieve some of the spinal cord compromise.  If you do not get results from your present neurosurgeon, then seek a second opinion from another neurosurgeon.  Likely, your muscle atrophy is neurogenic as well as the increased tendon reflexes.  The bad news is that it might be irreversible and there is no way I can tell over the internet.  I would see your neurosurgeon sooner rather than later.

Sincerely,

CCF Neuro MD