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.

@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

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Hi Hosta, this is Marield65. I had a nerve block to my lower back (not sure what discs) and it worked for awhile and I felt great But i had multiple problems with my back and many surgeries and shots after that. But it did give me a reprieve. Now I have to go back for shots because my L5 is pinching a nerve going down my leg and don the line I have to have another fusion of L3 to 4&5. I’ve had pain off and on for 15 years and it is running and ruining my life. I live for my family. I do have good days but then I pay dearly for it with the pain. But then there is always tomorrow.

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@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

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Hello Marield65, We sure don’t know what tomorrow will bring, do we? I have been told there is to much damage to take care of. I don’t want to live on pain medication especially opioids. I will try almost anything. I will have the second of the Medial Branch Nerve Blocks on 8/18/17. I pray that it will do as much good as the first ones did. I start out the day not to bad, but as the day goes on, it gets worse, I’m just so tired all the time. I have put up with this for most of 61 years. But when I see what some of the others post, and see others in doctors offices, I guess I’m not so bad off. There is so much I still want to do! God willing, I will get to do some of it. Thanks for your feedback

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@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

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Hosta, Marie here. You are right, we don’t know what tomorrow will bring. I’m hoping tomorrow will bring me some relief from this virus bug I have had for 5 days on and off. My back hasn’t hurt for the days I have been ill. Then again I haven’t done anything. I will feel fine,do something and then get so weak I have to go back on the couch. And the weather is so beautiful here. 80’s no humidity and I Don’t have the energy to go sit on the deck.
Can’t catch a break. I am going to sign off for now because I can’t stand my own whining. I hope everything works out well for you.

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I had a lumbar fusion many years ago. Recovery was uneventful and I was able to resume all activities with no pain. But many years later I started having low back pain, esp. after lying prone for several hours. Had MRIs. Doctor at HSS said that original fusion was still good, but it needed to be expanded and reinforced with a device placed around the lumbar spine to relieve stress above and below area of prior fusion. I’m very reluctant to have another major surgery, but after sleeping several hours the pain is acute. I’d appreciate hearing from anyone who may have had same problem.

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@commongood

I had a lumbar fusion many years ago. Recovery was uneventful and I was able to resume all activities with no pain. But many years later I started having low back pain, esp. after lying prone for several hours. Had MRIs. Doctor at HSS said that original fusion was still good, but it needed to be expanded and reinforced with a device placed around the lumbar spine to relieve stress above and below area of prior fusion. I’m very reluctant to have another major surgery, but after sleeping several hours the pain is acute. I’d appreciate hearing from anyone who may have had same problem.

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Hi @painless, and welcome to Connect.
I moved your message to this existing discussion about chronic back pain so that you can meet some of these members who are talking about this topic. You may be interested in reading some of their previous posts in this thread.

I also thought you might like to meet some of the members who’ve talked about spinal fusion in particular, like @sallymagint, @jlfisher56, @gailg, @jrchicago and @kdubois.

Many members who participate in this group also have found our Mental Health Group helpful, here: https://connect.mayoclinic.org/group/mental-health/.

A few discussions in particular that might be of interest to you are:
https://connect.mayoclinic.org/discussion/anxiety-and-depression-1/ and
https://connect.mayoclinic.org/discussion/long-term-depression/
Are you finding any of the remedies you are using now to control your pain are bringing you any relief?

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@commongood

I had a lumbar fusion many years ago. Recovery was uneventful and I was able to resume all activities with no pain. But many years later I started having low back pain, esp. after lying prone for several hours. Had MRIs. Doctor at HSS said that original fusion was still good, but it needed to be expanded and reinforced with a device placed around the lumbar spine to relieve stress above and below area of prior fusion. I’m very reluctant to have another major surgery, but after sleeping several hours the pain is acute. I’d appreciate hearing from anyone who may have had same problem.

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Hi Steve @painless .

I’m sorry you’re having so much pain. I had a spinal cord stimulator implant in June, for peripheral neuropathy pain in my feet, and it was wonderful to have relief from 7-9 level pain. Much of the time I’m not actively aware of the pain, though I do have significant burning pain some days. That usually happens when I walk or stand on hard surfaces for more than an hour. The first step is a temporary implant, to see how much it helps. If you get at least 50% relief, you can qualify for a permanent implant. The surgery is outpatient, and as with any surgery, there are physical limitations for a while.

The newest stimulator is the Burst DR, and is MRI compatible. Previous ones were not. The Abbott company bought it from St. Jude’s, who developed and marketed it. If you consider it, be sure to specify Burst DR.

I pray that you’ll get some answers very soon.

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Jim,
Can you or anyone explain all the uses of a spinal cord stimulator? You’re using it for peripheral neuropathy, but I’m wondering if it works for back pain, cervical pain, or any other type? I’ve heard of it but no one’s ever explain to me exactly it’s uses. Thank you, Jennifer

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@jenapower

Jim,
Can you or anyone explain all the uses of a spinal cord stimulator? You’re using it for peripheral neuropathy, but I’m wondering if it works for back pain, cervical pain, or any other type? I’ve heard of it but no one’s ever explain to me exactly it’s uses. Thank you, Jennifer

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@jenapower

Hi Jennifer. As far as I know, it’s designed to work with nerve pain. The leads are connected to the nerves that are in the spinal column, that control pain recognition, back, legs, feet, hands and arms, head, and torso – just about any nerves that are damaged or malfunctioning.

That’s what I understand from my limited education. I would Google Burst DR or spinal cord stimulator for more information.

Jim

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@commongood

I had a lumbar fusion many years ago. Recovery was uneventful and I was able to resume all activities with no pain. But many years later I started having low back pain, esp. after lying prone for several hours. Had MRIs. Doctor at HSS said that original fusion was still good, but it needed to be expanded and reinforced with a device placed around the lumbar spine to relieve stress above and below area of prior fusion. I’m very reluctant to have another major surgery, but after sleeping several hours the pain is acute. I’d appreciate hearing from anyone who may have had same problem.

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@donnacpt07

Donna,

It’s always distressing to see human suffering, which you’ve probably experienced in your work as a pt. I wonder if a pt (the other kind of pt) could help you. You don’t say what help you’ve sought out. I know from my own painful experience what a challenge it can be to find the best solutions. I don’t pretend to have the answers. But I hope you persist until you get relief from the pain you’re having.

Jim

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@commongood

I had a lumbar fusion many years ago. Recovery was uneventful and I was able to resume all activities with no pain. But many years later I started having low back pain, esp. after lying prone for several hours. Had MRIs. Doctor at HSS said that original fusion was still good, but it needed to be expanded and reinforced with a device placed around the lumbar spine to relieve stress above and below area of prior fusion. I’m very reluctant to have another major surgery, but after sleeping several hours the pain is acute. I’d appreciate hearing from anyone who may have had same problem.

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Jim, That is great information and I thank you for it. I have an appointment with the Pain Management folks on Oct. 23 and will definitely bring it up.
Thank you so much. And thanks To everyone who has been so kind as to take time out of your busy lives to help me through these trying times.
BTW: any suggestions for managing the pain between now and then? I’m trying everything I know; Hydrocodone, ibuprofen, rest, ice, wine (helped for an hour but not worth the after effects) , massage (felt great during but very sore afterward), acupuncture (hurt during and very sore afterward). Haven’t tried marijuana yet (well, since the 70’s) but I’ll do ANYTHING at this point.

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Thanks Jim, I’ve hear about them and wondered if it helped. Mine is mostly cervical disc degeneration, some nerve damage, and some lumbar problems. I didn’t know if it worked just for one specific nerve or an area. Thanks, Jennifer

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@commongood

I had a lumbar fusion many years ago. Recovery was uneventful and I was able to resume all activities with no pain. But many years later I started having low back pain, esp. after lying prone for several hours. Had MRIs. Doctor at HSS said that original fusion was still good, but it needed to be expanded and reinforced with a device placed around the lumbar spine to relieve stress above and below area of prior fusion. I’m very reluctant to have another major surgery, but after sleeping several hours the pain is acute. I’d appreciate hearing from anyone who may have had same problem.

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@painless

I take morphine and Cymbalta, and sometimes Percocet and orphenadrine, a muscle relaxer,Ibuprofen, Tylenol, medical marijuana edible, sleep, naps. The first two are the only ones I take regularly. Plus Wellbutrin, Clonazepam, claritin, Benadryl and all the vitamins. I have Lidocaine cream to numb my feet, and have tried without success, Capzasin. Having a psychiatric service dog helps a lot.

And to think I never took a pill until I was 39. I was never sick, and only missed 3 days of school because of measles.

Jim

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