Chronic Back Pain for Years

Posted by jlfisher56 @jlfisher56, May 2, 2017

6 back surgeries (extensive cervical and lumbar fusions) with neurological complications. Left with chronic pain. Accident happened in Nursing career 1992 and worked with first fusions until 1999 (failed fusions). At my age, and as a former nurse educator, I never wanted to had to rely on medication/s for the severe pain. Having thoroughly exhausted exploring sites using non-pharmaceutical methods, using psychological methods, biofeedback, trying to accept my limitations, i.e., I still believe somewhere...out there...is hope. The strong medicine has caused gastroparesis, further complicating my health problems. They are too numerous to write and I will not focus on them. I am looking for "help" and guidance. If I can be of assistance to anyone throughout their trials, (perhaps similar to some of what I have gone through), I will.

Interested in more discussions like this? Go to the Spine Health Support Group.

Since I sincerely believe I cannot rely upon my Primary Care (VA) Doctor, I have been very desperately and diligently reading everything here that other people post. I am hoping so much to perhaps find help with and/or suggestions to ease this horrible, unrelenting pain. Pain is literally ruling my life.
My Doctor will not give me muscle relaxers or any kind of pain pill (even after receiving the results of my MRI), and he is also very against over-the-counter (or any kind) of Ibuprofen. He says it is useless for pain, anyway. He did tell me that my lower back pain will eventually all resolve itself. He insists that I just have to give it time to go away on its own. I just don't know. I have listed above the word-for-word results of my MRI, but I have no idea how to read it or interpret it. He himself received the results and told me, "Nothing to worry about." Here are the results again, to save anyone interested from having to "back-track".:

L1-L2: No significant disc bulge. No spinal canal stenosis or neuroforaminal narrowing.

L3-L4: Diffuse disc bulge with superimposed right subarticular zone disc extrusion, with approximately 11 mm caudal migration of disc material.
There is bilateral facet arthropathy and facet effusions. There is spinal canal stenosis, primarily secondary to disc bulge. There is narrowing of the lateral recesses bilaterally, with abutment of the descending right L4 nerve roots.
There is severe right neural foraminal narrowing.

L4-L5: Broad-based disc bulge. There is moderate bilateral facet arthropathy. There is moderate right neural foraminal narrowing.

L5-S1: Broad-based disc bulge.. Moderate bilateral facet arthropathy with facet effusions bilaterally. Moderate bilateral neural foraminal narrowing, greater the right.

S1-S2: Broad-based disc bulge. Severe bilateral facet arthropathy, with a left facet effusion. Extraforaminal synovial cysts are noted to project anterolaterally from the left facet joint, with significant encroachment upon the exiting nerve roots. There is an additional small synovial cyst projecting inferiorly from the facet joint. Mild right and moderate left neural foraminal narrowing.

END OF MRI RESULTS

REPLY
@jlfisher56

Thank you Justin and I gladly will share my story if it can help anyone. It is very lenghty so I will try to keep it as abbreviated as possible but to the point. I can understand some of what physical therapy you "might" have gone through post-op with an ankle fusion (had a total rt knee and lt hip replacement). You are correct...long and hard.
I injured my back as a nurse involving a patient. For 2 years I was misdiagnosed as a "lumbar strain" when actually it was a cervical cord compression at C5 to C7. I did have a slight herniation at L4 and slippage and most pain seemed to come from there. My bowel and bladder were affected, legs were weak and arms. I worked in the NICU as "light-duty" using a special back brace but over 2 years continually symptoms became worse. The head of physical therapy stated my EMG showed more from the cervical or upper thorax than lumbar. I started to pronounced arm weakness, neck pain,and cervical headaches. The physiatrist stated, "I tell the doctors to always check the whole back because often the problem is coming elsewhere and not where the patient's pain is." My doctor "knew" better and thought MS but the MRI was negative.
To shorten the story, I went to the"pioneer of back surgery" in Philadelphia (an orthopedic surgeon I knew) and saw his neurologist. First glance he noticed in my face the abnormal jaw reflex and the change in the curvature of my neck into an "L" shape. I had almost a "total" compression C5-C6 and C6-C7 just about as bad. My doctor stated I should have been dead or a quadriplegic and was amazed I was even walking. I had an anterior fusion 2 years after my initial injury (1994) and then the slippage and herniation L4-L5 worsened (I was working part-time as an instructor at my hospital).
I needed trimming L4 and fusion L5-S1 with hardware posterior in 1995 and kept working. My symptoms improved with some neurological deficits remaining but not that severe. Pain only when walking too much and not taking enough breaks. As time went on, I started have all the original symptoms reoccur.
I had what is called a "failed" fusion. My fusions were unstable and areas above and below were herniating or impinging nerves. The peripheral nerves to arms, legs, bowel and bladder and now increasing pain happening more and more were becoming constant. In 1998, thorough testing (discogram, MRIs, EMGs, i.e demonstrated I had a "bad" back). I almost fell off the litter when the x-ray doctor told me.
These were extensive and because of years of the "failure", permenant nerve damage has remained even though some did get better. I had a posterior cervical fusion C4-C7 and 6 weeks later anterior cages and posterior fusion L3-S1 Lumbar area. I developed a post-op hematoma and infection of the lumbar fusion which worsened the neurogenic bowel and I needed 2 bowel operations and am left with a functioning colon but only 18 cm. The neurogenic bladder did become better in time.
I am sorry this is so lengthy but if I can help anyone, just a little more. I know length can turn people off! I developed scar tissue in the spinal cord arachnoiditis (lumbar area found in my testing before my refusions) that causes a lot of chronic pain, had nerve pain and chronic pain, which worsened as the years have gone by. Due to the nerve damage to my bowel, plus certaain medications, gastroparesis (decreased contraction of the nerves to the stomach) which can be very serious. I had botox to the LES plus take medicine to help the stomach to contract. Also, my fusion healed crooked, and I have "torticollis" (very painful), and get botox every 3 months. Many of my problems went undiagnosed for years, thus causing permanence of my symptoms to some degree.
I do apologize for the length. I do not want to bore or act like I have it worse than others. If I can help anyone or if anyone can help me. I greatly would appreciate it. I have tried many "mental" and "physical' therapies plus my TENS unit as an adjuvant but still need my chronic pain and gastric medications. Some of the chronic pain medications are continuing to "destroy" the stomach nerves which really upsets me. I'd love to get off everything but after all these years and all the complications, am loosing hope. I keep praying.
Best to you with your ankle. I am sure you have your good days as well as bad and the "weather" isn't always your friend. It is funny how so many have told me they can predict the weather from their "bone'' injuries and I must agree LOL. Take care. Joan

Jump to this post

@jlfisher56 and @tennessegirl2, thank you so very much for such quick replies to my question about TENS. I have a dr.'s appt. first thing tomorrow morning and this will come in very handy. In 2014 I had something similar to this at my chiropractor's. I later even ordered the kind that you put around your forehead with electrodes positioned underneath on each side of your head. The tiny one at the chiropractor's worked better for me. Again, many thanks for your replies, and good luck. Take care, @cognac

REPLY
@jlfisher56

Thank you Justin and I gladly will share my story if it can help anyone. It is very lenghty so I will try to keep it as abbreviated as possible but to the point. I can understand some of what physical therapy you "might" have gone through post-op with an ankle fusion (had a total rt knee and lt hip replacement). You are correct...long and hard.
I injured my back as a nurse involving a patient. For 2 years I was misdiagnosed as a "lumbar strain" when actually it was a cervical cord compression at C5 to C7. I did have a slight herniation at L4 and slippage and most pain seemed to come from there. My bowel and bladder were affected, legs were weak and arms. I worked in the NICU as "light-duty" using a special back brace but over 2 years continually symptoms became worse. The head of physical therapy stated my EMG showed more from the cervical or upper thorax than lumbar. I started to pronounced arm weakness, neck pain,and cervical headaches. The physiatrist stated, "I tell the doctors to always check the whole back because often the problem is coming elsewhere and not where the patient's pain is." My doctor "knew" better and thought MS but the MRI was negative.
To shorten the story, I went to the"pioneer of back surgery" in Philadelphia (an orthopedic surgeon I knew) and saw his neurologist. First glance he noticed in my face the abnormal jaw reflex and the change in the curvature of my neck into an "L" shape. I had almost a "total" compression C5-C6 and C6-C7 just about as bad. My doctor stated I should have been dead or a quadriplegic and was amazed I was even walking. I had an anterior fusion 2 years after my initial injury (1994) and then the slippage and herniation L4-L5 worsened (I was working part-time as an instructor at my hospital).
I needed trimming L4 and fusion L5-S1 with hardware posterior in 1995 and kept working. My symptoms improved with some neurological deficits remaining but not that severe. Pain only when walking too much and not taking enough breaks. As time went on, I started have all the original symptoms reoccur.
I had what is called a "failed" fusion. My fusions were unstable and areas above and below were herniating or impinging nerves. The peripheral nerves to arms, legs, bowel and bladder and now increasing pain happening more and more were becoming constant. In 1998, thorough testing (discogram, MRIs, EMGs, i.e demonstrated I had a "bad" back). I almost fell off the litter when the x-ray doctor told me.
These were extensive and because of years of the "failure", permenant nerve damage has remained even though some did get better. I had a posterior cervical fusion C4-C7 and 6 weeks later anterior cages and posterior fusion L3-S1 Lumbar area. I developed a post-op hematoma and infection of the lumbar fusion which worsened the neurogenic bowel and I needed 2 bowel operations and am left with a functioning colon but only 18 cm. The neurogenic bladder did become better in time.
I am sorry this is so lengthy but if I can help anyone, just a little more. I know length can turn people off! I developed scar tissue in the spinal cord arachnoiditis (lumbar area found in my testing before my refusions) that causes a lot of chronic pain, had nerve pain and chronic pain, which worsened as the years have gone by. Due to the nerve damage to my bowel, plus certaain medications, gastroparesis (decreased contraction of the nerves to the stomach) which can be very serious. I had botox to the LES plus take medicine to help the stomach to contract. Also, my fusion healed crooked, and I have "torticollis" (very painful), and get botox every 3 months. Many of my problems went undiagnosed for years, thus causing permanence of my symptoms to some degree.
I do apologize for the length. I do not want to bore or act like I have it worse than others. If I can help anyone or if anyone can help me. I greatly would appreciate it. I have tried many "mental" and "physical' therapies plus my TENS unit as an adjuvant but still need my chronic pain and gastric medications. Some of the chronic pain medications are continuing to "destroy" the stomach nerves which really upsets me. I'd love to get off everything but after all these years and all the complications, am loosing hope. I keep praying.
Best to you with your ankle. I am sure you have your good days as well as bad and the "weather" isn't always your friend. It is funny how so many have told me they can predict the weather from their "bone'' injuries and I must agree LOL. Take care. Joan

Jump to this post

Take care. I'm glad I was able to help and please keep us posted!

REPLY
@lifetime

The support and encouragement i have gotten here has been just unbelievable!! I have never gotten SUCH CARING even close to this!!! I can't stress that enough!!
Sadly, I have severely re-hurt my back over and over these past few years especially, because my doctor told me I had absolutely no limits on what I could do. I have leaned over many times to pick up heavy things, only to be "frozen" in gut-wrenching pain, and not able to straighten back up for at least a week. I really thought my doctor knew best.
I sadly have no family near by who can help. I live alone (my fiance died unexpectedly several years ago due to an unknown congenital heart condition) and must do everything myself. My doctor always said that it was OK.
I have no other health insurance, or recourse.
One hard and ugly truth I have learned over and over about the VA hospital here.. if you slight a certain doctor, not follow what he says or try to turn him in, you PAY for it a hundred times over. I hesitate to even mention specific circumstances as most people would probably not even believe that any doctor could EVER stoop to or dare to do such things.
The more I try to complain or try to stand up for myself in even the smallest way, the more certain doctors can (and do!) get back at you. It becomes so brutal and traumatizing, over and over and over. But it is REALITY.
It makes it worse, I believe, that I am a woman, as certain male doctors will shamelessly and openly harass and cruelly sexually abuse women patients, with no fear of reprimand whatsoever.
PLEASE PLEASE NOTE: MOST DOCTORS here are VERY ethical and VERY kind to all. I just happened to have gotten the very bad one or two.

Jump to this post

@lifetime, I know how hard it is to live alone and live in pain. I'm sorry you're going through it, too. Perhaps this group can figure out some way to at least get you re-assigned to another doctor? Perhaps the first step would be for you to keep copies of the results of your tests? That's one of the things that helped me when I changed doctors. I actually went and had copies made of what was on file in the "Patient's Records Library", as one hospital named it. The doctor had made several mistakes of a CAT scan. Anyway, you get the idea. You do the best you can to take care of yourself. We're all pulling for you.

REPLY
@lifetime

The support and encouragement i have gotten here has been just unbelievable!! I have never gotten SUCH CARING even close to this!!! I can't stress that enough!!
Sadly, I have severely re-hurt my back over and over these past few years especially, because my doctor told me I had absolutely no limits on what I could do. I have leaned over many times to pick up heavy things, only to be "frozen" in gut-wrenching pain, and not able to straighten back up for at least a week. I really thought my doctor knew best.
I sadly have no family near by who can help. I live alone (my fiance died unexpectedly several years ago due to an unknown congenital heart condition) and must do everything myself. My doctor always said that it was OK.
I have no other health insurance, or recourse.
One hard and ugly truth I have learned over and over about the VA hospital here.. if you slight a certain doctor, not follow what he says or try to turn him in, you PAY for it a hundred times over. I hesitate to even mention specific circumstances as most people would probably not even believe that any doctor could EVER stoop to or dare to do such things.
The more I try to complain or try to stand up for myself in even the smallest way, the more certain doctors can (and do!) get back at you. It becomes so brutal and traumatizing, over and over and over. But it is REALITY.
It makes it worse, I believe, that I am a woman, as certain male doctors will shamelessly and openly harass and cruelly sexually abuse women patients, with no fear of reprimand whatsoever.
PLEASE PLEASE NOTE: MOST DOCTORS here are VERY ethical and VERY kind to all. I just happened to have gotten the very bad one or two.

Jump to this post

@cognac. Terrific advice! There are places here that offer free MRI reviews. If a facility like that requested her records with a signed release from @ lifetime they could not refuse.

REPLY
@lifetime

Since I sincerely believe I cannot rely upon my Primary Care (VA) Doctor, I have been very desperately and diligently reading everything here that other people post. I am hoping so much to perhaps find help with and/or suggestions to ease this horrible, unrelenting pain. Pain is literally ruling my life.
My Doctor will not give me muscle relaxers or any kind of pain pill (even after receiving the results of my MRI), and he is also very against over-the-counter (or any kind) of Ibuprofen. He says it is useless for pain, anyway. He did tell me that my lower back pain will eventually all resolve itself. He insists that I just have to give it time to go away on its own. I just don't know. I have listed above the word-for-word results of my MRI, but I have no idea how to read it or interpret it. He himself received the results and told me, "Nothing to worry about." Here are the results again, to save anyone interested from having to "back-track".:

L1-L2: No significant disc bulge. No spinal canal stenosis or neuroforaminal narrowing.

L3-L4: Diffuse disc bulge with superimposed right subarticular zone disc extrusion, with approximately 11 mm caudal migration of disc material.
There is bilateral facet arthropathy and facet effusions. There is spinal canal stenosis, primarily secondary to disc bulge. There is narrowing of the lateral recesses bilaterally, with abutment of the descending right L4 nerve roots.
There is severe right neural foraminal narrowing.

L4-L5: Broad-based disc bulge. There is moderate bilateral facet arthropathy. There is moderate right neural foraminal narrowing.

L5-S1: Broad-based disc bulge.. Moderate bilateral facet arthropathy with facet effusions bilaterally. Moderate bilateral neural foraminal narrowing, greater the right.

S1-S2: Broad-based disc bulge. Severe bilateral facet arthropathy, with a left facet effusion. Extraforaminal synovial cysts are noted to project anterolaterally from the left facet joint, with significant encroachment upon the exiting nerve roots. There is an additional small synovial cyst projecting inferiorly from the facet joint. Mild right and moderate left neural foraminal narrowing.

END OF MRI RESULTS

Jump to this post

@lifetime also make several copies of whatever paperwork keep one for your file I have my records from 2005 when I fractured my back ,you never know when you,'ll need them ,

REPLY
@lifetime

The support and encouragement i have gotten here has been just unbelievable!! I have never gotten SUCH CARING even close to this!!! I can't stress that enough!!
Sadly, I have severely re-hurt my back over and over these past few years especially, because my doctor told me I had absolutely no limits on what I could do. I have leaned over many times to pick up heavy things, only to be "frozen" in gut-wrenching pain, and not able to straighten back up for at least a week. I really thought my doctor knew best.
I sadly have no family near by who can help. I live alone (my fiance died unexpectedly several years ago due to an unknown congenital heart condition) and must do everything myself. My doctor always said that it was OK.
I have no other health insurance, or recourse.
One hard and ugly truth I have learned over and over about the VA hospital here.. if you slight a certain doctor, not follow what he says or try to turn him in, you PAY for it a hundred times over. I hesitate to even mention specific circumstances as most people would probably not even believe that any doctor could EVER stoop to or dare to do such things.
The more I try to complain or try to stand up for myself in even the smallest way, the more certain doctors can (and do!) get back at you. It becomes so brutal and traumatizing, over and over and over. But it is REALITY.
It makes it worse, I believe, that I am a woman, as certain male doctors will shamelessly and openly harass and cruelly sexually abuse women patients, with no fear of reprimand whatsoever.
PLEASE PLEASE NOTE: MOST DOCTORS here are VERY ethical and VERY kind to all. I just happened to have gotten the very bad one or two.

Jump to this post

Thank you so very much, for such excellent suggestions, @cognac!! I just started about a year ago to keep copies of all my medical records from the VA. It was not easy at all, in the beginning, to get them.
But now that they are being a little less argumentative about it, I can legally get copies, and I certainly do.
There are a few places near me that will read your MRI results, but only for a very hefty fee. (I wonder if the MRI itself costs as much!!).
I am working very, very hard on finding a way to get an alternative doctor. Even if I succeed at the VA to get a different primary doctor, they made it clear to me that it would be a doctor on the same exact "team" as my first doctor and he would still have input on everything decided and done on my case. Each team also backs up each of its team members.
And you cannot get an appointment with any other doctor or specialist in the VA hospital your primary doctor's approval.
BUT.. I am still always thinking and working towards eventually getting some help...

REPLY
@lifetime

Since I sincerely believe I cannot rely upon my Primary Care (VA) Doctor, I have been very desperately and diligently reading everything here that other people post. I am hoping so much to perhaps find help with and/or suggestions to ease this horrible, unrelenting pain. Pain is literally ruling my life.
My Doctor will not give me muscle relaxers or any kind of pain pill (even after receiving the results of my MRI), and he is also very against over-the-counter (or any kind) of Ibuprofen. He says it is useless for pain, anyway. He did tell me that my lower back pain will eventually all resolve itself. He insists that I just have to give it time to go away on its own. I just don't know. I have listed above the word-for-word results of my MRI, but I have no idea how to read it or interpret it. He himself received the results and told me, "Nothing to worry about." Here are the results again, to save anyone interested from having to "back-track".:

L1-L2: No significant disc bulge. No spinal canal stenosis or neuroforaminal narrowing.

L3-L4: Diffuse disc bulge with superimposed right subarticular zone disc extrusion, with approximately 11 mm caudal migration of disc material.
There is bilateral facet arthropathy and facet effusions. There is spinal canal stenosis, primarily secondary to disc bulge. There is narrowing of the lateral recesses bilaterally, with abutment of the descending right L4 nerve roots.
There is severe right neural foraminal narrowing.

L4-L5: Broad-based disc bulge. There is moderate bilateral facet arthropathy. There is moderate right neural foraminal narrowing.

L5-S1: Broad-based disc bulge.. Moderate bilateral facet arthropathy with facet effusions bilaterally. Moderate bilateral neural foraminal narrowing, greater the right.

S1-S2: Broad-based disc bulge. Severe bilateral facet arthropathy, with a left facet effusion. Extraforaminal synovial cysts are noted to project anterolaterally from the left facet joint, with significant encroachment upon the exiting nerve roots. There is an additional small synovial cyst projecting inferiorly from the facet joint. Mild right and moderate left neural foraminal narrowing.

END OF MRI RESULTS

Jump to this post

Yes, thank you so much!!!!

REPLY
@lifetime

The support and encouragement i have gotten here has been just unbelievable!! I have never gotten SUCH CARING even close to this!!! I can't stress that enough!!
Sadly, I have severely re-hurt my back over and over these past few years especially, because my doctor told me I had absolutely no limits on what I could do. I have leaned over many times to pick up heavy things, only to be "frozen" in gut-wrenching pain, and not able to straighten back up for at least a week. I really thought my doctor knew best.
I sadly have no family near by who can help. I live alone (my fiance died unexpectedly several years ago due to an unknown congenital heart condition) and must do everything myself. My doctor always said that it was OK.
I have no other health insurance, or recourse.
One hard and ugly truth I have learned over and over about the VA hospital here.. if you slight a certain doctor, not follow what he says or try to turn him in, you PAY for it a hundred times over. I hesitate to even mention specific circumstances as most people would probably not even believe that any doctor could EVER stoop to or dare to do such things.
The more I try to complain or try to stand up for myself in even the smallest way, the more certain doctors can (and do!) get back at you. It becomes so brutal and traumatizing, over and over and over. But it is REALITY.
It makes it worse, I believe, that I am a woman, as certain male doctors will shamelessly and openly harass and cruelly sexually abuse women patients, with no fear of reprimand whatsoever.
PLEASE PLEASE NOTE: MOST DOCTORS here are VERY ethical and VERY kind to all. I just happened to have gotten the very bad one or two.

Jump to this post

So sorry.. made a typo. ti should say, "WITHOUT your primary doctor's approval".

REPLY

Every so often, my VA Primary Care doctor will ask me about making an appointment for a pap smear and/or a mammogram. One time, he said to me, "You know, I don't really care if you EVER want me to schedule them. I am PAID as a doctor to SAY I care, but truthfully, I couldn't care less.".
I left there thinking that maybe all doctors secretly feel this way, and maybe my doctor was just being exceptionally truthful to me and I should feel honored.
Perhaps this explains his attitude about my back pain now..???

REPLY
Please sign in or register to post a reply.