help with arachnoiditis type symptoms at night

[ZensMom]

I have never been told that I have arachnoiditis. However, I had a posterior lumbar fusion in 2008 that did not fuse. I have many symptoms that fit the criteria of arachnoiditis and understand there is not much other than symptom control for this. I also had a shingles outbreak in the same dermatome L4_L5 where I had my failed fusion. Since t h at time at night I experience severe burning of the nerve tracts down my legs, across my shoulders, and down the C5-C6 dermatome tract , and even in my face and my scalp. This is intensified in a supine position or prolonged sitting. I have gotten to the point where I dread going to bed at night. I have to sleep in certain positions to lessen the burning. Tramadol has been working in the past but seems to not work as well recently. What other things have sufferers out there tried that has made this bearable? I have been seen by a neurologist, neurosurgeon, primary care, and even an endocrinologist but can't get much in the way of understanding just how miserable this is. Any recommendations will be much appreciated. Thanks, ZensMom

[Foggy2]

Central pain syndrome, there are also other names for it, is a recognized diagnosis.  I can empathize with everything you described above and your posts.  I think finding the right neurosurgeon and pain treatment center would be the best thing for you at this time as well as keeping your endocrine disorders on track since they can also give you pain as well especially thyroid and adrenal disorders.  

You've been through a lot. And for a person who has given their life into helping others, please don't give up and hang in there. Know that there are other people like me who are always here to listen and support you. :-)

[ZensMom]

Thank you so much for all of this info.  I will definitely check in to the various pain centers in this area and find one that is not geared towards the steroid injections.  I guess my fear is that I have been maintaining although hurting each day and mostly nights on my current regimen and afraid that with the current climate of not prescribing pain medications that I will lose access to the very things that have kept me moving for the last six years.  I had my fusion in 2008 and the neurosurgeon at that time told me it was fine for me to return to work as long as I did not lift anything heavier than 10 or 20 pounds.  And he had done his residency in our unit!!  He knew what my job entailed. We had patients whose legs weighed more than that!!  My primary had spoken to me prior to surgery about SSD and placing me on that if I did not have the surgery.  I was so disturbed by the thought of being disabled that I proceeded with the surgery.  I had foot drop on the right and bladder incontinence at the time so didn't really have much choice.  I was one of those providers who had always said that I would have to be crawling before I would consider back surgery.  Actually canceled it once, but then relented as things kept getting worse.  Of course, after surgery not too many surgeons will assist you in going out on disability. I felt at the time that it would be a difficult task to achieve as I felt they would think there was some other form of nursing I could participate in that was less physically demanding.  However, getting hired as a nurse with a bad back and a positive drug screen despite the fact that they are prescribed is not an easy task.  Especially after the age of 50!  I was just fortunate that I worked for a system that allowed early retirement and provided a pension with health benefits. So, that is the route I chose and find myself in today.

In looking at the web site for pain management for arachnoiditis that you provided, I ran across another syndrome that I have never heard mentioned before.  It sounds so similar to my issues as does the arachnoiditis that now I am really confused.  Central pain syndrome describes the generalized burning sensations that I have with the numbness in my right foot and the sharp shooting pains that I experience at intervals.  I have researched this to death and finally got frustrated and just thought this is my life and will have to deal with it the best I can. I have never had a neurosurgeon or neurologist mention either of these terms to me as a possible diagnosis.  I hesitate to bring them up as I am not sure how this diagnosis is perceived in the medical community.

I suppose the reason I feel it is something of this nature is that I have had so many traumatic events with my spine.  Severe whiplash injury in ' 97, multiple lumbar punctures in the ER in 2007 for a negative stroke work up, herniated disks at L3-L4, L4-L5 with a failed fusion with BMP and cadaver bone utilized posteriorly for the repair, shingles in the L4-L5 dermatome, and a family history of spinal stenosis requiring surgery.  Add that to the years of wear and tear from trauma transports and this is what I get I guess. I cringe as I write this as I never thought I would find myself in this condition!

I really appreciate your input and will try to find another neurosurgeon for a second opinion.  I have moved out of state from the initial surgeon who did my repair and I am not familiar with the health care system where we currently live.  Thanks again for your excellent insights.

[Foggy2]

I forgot to mention above, that you may want to begin the process of applying for SSD.  It takes over a year to apply, and usually you get rejected the first time around.  It helps to have an attorney that specializes in SSD, but you can download the papers online, and as I said it will take a while just to complete them.

[Foggy2]

You've been through a lot, and having been on the other side (patient vs. health care provider), I can understand not wanting to be "labeled."

If you had a non-fusion, and the only way for you to get comfort in bed by the way you described it above is actually opening up one side of the spinal column (laying on your side with your R foot elevated), something is wrong.  I would seek a 2nd opinion from a neurosurgeon.  Do some research on finding a good one; it can't hurt to call a local ER RN and ask them who would you see if you were hurt, and check online for reviews.

As for pain control, have you tried a TENS unit or the traditional hot/cold packs?  I would also suggest that you research a different pain center; each focuses of different modalities.  Some focus more on medication, others on alternative medication, PT.  Steroid injections aren't used as much now as they used to; some people actually get a "steroid reaction" to them where the pain gets worse and they run a fever after getting a joint injection.  There is a new treatment now called Calamere, that only a few places in the country are certified to give, that is similar to TENS, but works deeper on the nerves and last longer.  They started doing this on the soldiers returning from the Iraq war and found it very successful.  This might be something to look into.  Another more invasive procedure for pain control is a spinal cord neurostimulator (SCS).  They do a trial first to see if it works, then if it works > 50% they implant one, but they can fail and batteries have to be replaced every 5 - 9 years.  You an look this up more under Boston Scientific SCS (Medtronic also makes one as well, but BS has been more successful).

This must be very frustrating to you, and chronic pain makes you depressed as well.  Perhaps joining an online support group or doing a hobby for short periods of time or something to help distract you from the pain will help while you do the above that I recommended.

I do empathize with you in that years of doing your job most likely contributed to your currently pain and suffering now, yet it was something you enjoyed and miss.  Please try to hang in there and know that you are not alone.  We are always here to listen and support you. :-)

[ZensMom]

Thank you for your response and the link to the pain management site for arachnoiditis.  I do have a supply of acyclovir on hand that my primary gave me for the shingles flares but no one was ever quite sure that was what was causing my issues at the time.  Very small area of rash appeared on my right calf that lasted for maybe a day or so but the pain from that was actually worse than my surgery!!  I did end up with post-herpetic neuropathy down my right leg though, diagnosed by my neurologist with an EMG. Thus, I have to assume it was in fact the shingles.

I have DDD both of the lumbar area and the cervical region.  I have never had any operative repair of the cervical region. I take tramadol, diazepam for both leg spasms and spasms in the neck and shoulder area that are intensified by both lying supine and certain physical activities of course.  

I have multinodular goiter and labs evaluated every six months and the magnesium level has never been low. I made changes to my bedding prior to my lumbar fusion and actually could not wait to get out of the hospital to get home to my setting.  The only thing in that category that helps is to sleep on my side with a pillow between the knees with my right foot elevated (go figure!).  

I met with a neurosurgeon twice and discussed the possibility of repeat surgery on my lumbar area.  He said it might help, might not, might make it worse.  Not a good prognosis from my perspective and the only diagnosis he left me with was "non-fusion, failed back surgery syndrome".  He scoffed at the idea of me returning to a neurologist (guess they have some differences of opinion in their medical practices) and suggested I go to a pain management clinic.  I know that if I go to a pain management clinic they will want to use steroid injections in my spine and I am not on board for that.  It is so difficult to even discuss pain control with my primary physician as he has a huge sign on his door that if you require pain medication that he does not prescribe and you must go to a pain clinic.  He does not even prescribe the tramadol and diazepam for me as my endocrinologist was kind enough to do that after I relocated from another area.

It is so frustrating.  I was a bedside RN for 32 years in critical care and know that part of my spine disorder is related to the physical work that I did for all that time.  I feel like the medical profession has left me hanging on this and I am embarrassed to ask for help as I am afraid they will perceive me as drug seeking.  That is not what I want.  Just a good quality of life in my retirement years.  Thank you so much for taking time to respond.  

[Foggy2]

Here is a link to learn more about Arachnoiditis:  http://www.webmd.com/pain-management/guide/pain-management-arachnoiditis ?

Having shingles in the same dermatome as your failed fusion I'm sure doesn't help with your pain control.  However if you do have a flare of your shingles, there is medication that if taken at the immediate onset can reduce the intensity and duration of the flare but you need to notify your doctor to get this medication to start it immediately.

The failed fusion would not give you pain to your upper body.  What other medical conditions have they ruled out?

What medical conditions do you have and what medications are you taking besides Tramadol, which you probably developed a tolerance for?  Have you asked your doctor for a different medication other than Tramadol?

Have you tried alternative methods of pain control or a pain center?  Have you had your magnesium level checked?  Have you tried changing your bedding to see if this improves your comfort?

If your fusion failed, are there plans to fix it?  What does your neurosurgeon have to say about this?