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

I use ice but at my chiropractor heat to get rid of the wastes and toxins as he states. He told me that is the new protocol but at home, didn’t give me as much relief. I asked my doctors and they stated the ice is calming the inflammation of the nerves, that is why it works better than heat so just use that. What the chiropractor said is correct but, if ice works just use it and this is why. So it is rare I use heat. 15 years ago I often did. Rarely at home though now. I do use my TENS a lot but it is a regular TENS.

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Good for you ,I was told samething about ice ,I know the heat brings the blood to the area but if area is swollen ,such as after an injury ,ice it then heat.

Liked by jlfisher56

@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 @eileena. When you say “light touch type of Chiropractor” Is the type of care you use called Reiki? Here is a description-
https://dahlc.mayoclinic.org/2015/12/29/9-facts-about-reiki/
I’ve heard of this but never had it done.

I have been in chronic back pain for 10 years or longer i have 2 bulging herniated disk in my back i have arthritis bad in my back i have degenerative disk disease and sciatica nerve pain. Yesterday they asked me if i wanted to try a spinal cord stimulator and i was wondering if anybody has had it done and can you let me know the pros and cons of it. Thank u

@mickiecariveau

I have been in chronic back pain for 10 years or longer i have 2 bulging herniated disk in my back i have arthritis bad in my back i have degenerative disk disease and sciatica nerve pain. Yesterday they asked me if i wanted to try a spinal cord stimulator and i was wondering if anybody has had it done and can you let me know the pros and cons of it. Thank u

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Hello @mickiecariveau, welcome to Connect. You may notice that I combined your new discussion with an existing discussion called, “Chronic Back Pain for Years.” I did this because I wanted to introduce you to the other members on Connect already discussing what you explained. I suggest clicking on VIEW & REPLY so you can be brought to the full discussion and read through the other members’ posts.

Here is a link to another discussion you also may find useful that is all about spinal cord stimulators, https://connect.mayoclinic.org/discussion/has-anybody-had-an-implantable-neurostimulator-for-chronic-pain/.

@mickiecariveau, you mentioned a spinal cord stimulator, if you don’t mind sharing, is it an implant stimulator that your doctor recommended?

Yes my doctor was talking bout placing it in my back but i was wondering the pros and cons of it

@mickiecariveau

Yes my doctor was talking bout placing it in my back but i was wondering the pros and cons of it

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@mickievariveau, thank you for answering. Were you able to click on the link I provided to a discussion all about the stimulator implant?

Yes

@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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Update Justin. Still no change with doctors. Just had an MRI of the brain and cervical as I have been having a lot of sensory deficits on my left side, increased muscle spasms, and having migraines again. Botox last Thursday was mainly left cervical muscles and base of skull. My neurologist decided on the MRI so I had it yesterday. My left leg has been falling asleep that it feels as if I have no feeling in it. Can take 5 minutes to be able to put weight on. Also, the normal decreased sensation on the left has become so pronounced, I didn\'t even feel the Imitrex shot in the left thigh the 3 times I had injected it. This is not my normal. At times when my neck muscles are tight, I can have more nerve symptoms because the nerve sheath \"pinches\" the nerve and it /they can\'t glide\'slide, causing decrease sensation/symptoms that do get better and abate. This time it hasn\'t and only has gotten worse especially the last two months.

Anyone have several back issues that involved epidurals and spine surgery and/or fusions? And I need,yet again another fusion. I am 72, otherwise good health, but am so tired of my back issues and need some help in deciding what to do about another surgery. I am in chronic pain, on meds for the pain if the epidurals don’t work. Am in denial right now about needing another surgery but sooner or later will need it and need some support right now. Anyone else have problems with constant back pain or issues?

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@marield65

Anyone have several back issues that involved epidurals and spine surgery and/or fusions? And I need,yet again another fusion. I am 72, otherwise good health, but am so tired of my back issues and need some help in deciding what to do about another surgery. I am in chronic pain, on meds for the pain if the epidurals don’t work. Am in denial right now about needing another surgery but sooner or later will need it and need some support right now. Anyone else have problems with constant back pain or issues?

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Sounds like it is going g to help you glad to hear it.I had an MRI on my back now I wil! See my pain Dr for injection I found out I have a bulging disc ,L5S1 is fused so no flexibility there terrible burning pain in my thighs keep improving.Lioness Linda

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@marield65

Anyone have several back issues that involved epidurals and spine surgery and/or fusions? And I need,yet again another fusion. I am 72, otherwise good health, but am so tired of my back issues and need some help in deciding what to do about another surgery. I am in chronic pain, on meds for the pain if the epidurals don’t work. Am in denial right now about needing another surgery but sooner or later will need it and need some support right now. Anyone else have problems with constant back pain or issues?

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HAPPY SATURDAY!
I HOPE YOUR PAIN DOC WILL BE ABLE TO HELP YOU.
I JUST GOT APPROVED FOR MY LUMBAR SHOT BUT THE SURGEON SAID I STILL HAVE TO WAIT 2 MORE WEEKS.
CAN'T WAIT.
MY CERVICAL HAS IMPROVED SINCE SURGERY BUT BECAUSE OF THE LUMBAR PAIN, I CAN'T DO VERY MUCH.
STILL SITTING IN MY CHAIR MOST OF THE TIME WITH A HEATING PAD.

HERE IS TO THE BOTH OF US THAT WE WILL GET OUR SHOTS AND FEEL BETTER!!!!!!!!!!!!!!!!!!!!!!!!!!!!!

RONNIE (GRANDMAr)

@marield65

Anyone have several back issues that involved epidurals and spine surgery and/or fusions? And I need,yet again another fusion. I am 72, otherwise good health, but am so tired of my back issues and need some help in deciding what to do about another surgery. I am in chronic pain, on meds for the pain if the epidurals don’t work. Am in denial right now about needing another surgery but sooner or later will need it and need some support right now. Anyone else have problems with constant back pain or issues?

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Amen to that

@marield65

Anyone have several back issues that involved epidurals and spine surgery and/or fusions? And I need,yet again another fusion. I am 72, otherwise good health, but am so tired of my back issues and need some help in deciding what to do about another surgery. I am in chronic pain, on meds for the pain if the epidurals don’t work. Am in denial right now about needing another surgery but sooner or later will need it and need some support right now. Anyone else have problems with constant back pain or issues?

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Justin I don’t mind at all @marield65

@marield65

Anyone have several back issues that involved epidurals and spine surgery and/or fusions? And I need,yet again another fusion. I am 72, otherwise good health, but am so tired of my back issues and need some help in deciding what to do about another surgery. I am in chronic pain, on meds for the pain if the epidurals don’t work. Am in denial right now about needing another surgery but sooner or later will need it and need some support right now. Anyone else have problems with constant back pain or issues?

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I received y referral ,when I called to make appt ,she said they don't receive referrals and I,'ll have to fax it to the ?this is something new to me ,ever hear of that?

@marield65

Anyone have several back issues that involved epidurals and spine surgery and/or fusions? And I need,yet again another fusion. I am 72, otherwise good health, but am so tired of my back issues and need some help in deciding what to do about another surgery. I am in chronic pain, on meds for the pain if the epidurals don’t work. Am in denial right now about needing another surgery but sooner or later will need it and need some support right now. Anyone else have problems with constant back pain or issues?

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Hi Katie 65, today it's three weeks since my fifth spine surgery and I'm without any back or leg pain for the first time in a year and a half. I'm 76 and it was a long and difficult surgery, my surgeon says recovery will take six months. I had two lumbar laminectomies and three fusions plus plates and screws, that's a lot to do all at once but so far it's like a miracle! Find the best neurosurgeon you can and go for it…..you've got a lot of living left to do!

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