Chronic Back Pain for Years

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

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

@gailb I see the pain specialist/neurologist in August. I will ask him about the Tramadol. Out of desperation I had botox injections from DDS because of TMJ. Not FDA approved for TMJ and set me back $1200. Trigger point injections in several areas as the clinching/grinding had my upper back (scoliosis) in a lot of pain. I have a splint and having it built back up has not helped. All docs around are fearful of prescribing anything stronger than OTC's. Hopefully this fear will pass. I don't have a history of substance abuse. The injections in my jaws has helped some. The whole body is connected!!! No relief from the other injections, but it can take 3 to 10 days to notice any change. Sure hope I did not throw that money a way.
Anyone else have experience with botox injections?

@gailb I see the pain specialist/neurologist in August. I will ask him about the Tramadol. Out of desperation I had botox injections from DDS because of TMJ. Not FDA approved for TMJ and set me back $1200. Trigger point injections in several areas as the clinching/grinding had my upper back (scoliosis) in a lot of pain. I have a splint and having it built back up has not helped. All docs around are fearful of prescribing anything stronger than OTC's. Hopefully this fear will pass. I don't have a history of substance abuse. The injections in my jaws has helped some. The whole body is connected!!! No relief from the other injections, but it can take 3 to 10 days to notice any change. Sure hope I did not throw that money a way.
Anyone else have experience with botox injections?

I have been doing a lot of serious thinking, and just feel too guilty because I am bringing all my back pain/doctor problems to this forum.
I will then say good-bye and thank you to all..I just have to defeat my own problems and handle my doctor the best way I can...
But....Thank you again, with all my heart.....

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

When my doc told me I needed back surgery I had trouble finding any patient to talk to. Due to the privacy laws my surgeon could not connect me with any of his previous patients. It was frustrating. Once I had my surgery, I began keeping a diary with my notes on what to expect, what I needed at the hospital, what mobility tools would have helped, what exercises were most effective and so forth. I just launched this book on Amazon, and I it will be free next weekend (Sunday and Monday - July 9 and July 10). I want to give a shout here so people can bookmark the book at get it for free - I wish I had this information before my surgery! The book name is "Step by Step Back Surgery. A Recovery Guide: What your doctor can’t tell you" by Kady Dash.

Hi all!!
It's been a bit of time since I wrote.
For those of you who are new to the group, I also have chronic pain.
After years of shots, procedures, etc. I had surgery on my C5/6 spine.
I was getting horrible headaches every day that woke me up.
It seemed the surgery worked (done in late Feb.).
After surgery, I had only 2 mild headaches, then soon none.
At about week 10, I fell twice. Thank you lumbar! (another story)
Within days, my headaches came back, not daily, however.
At week 12, when I went back for my last cervical check-up,
My surgeon could not help but see there was something going on since I was now walking with a cane (advice from my physical therapist).
Now, the headaches are back fast and furious on a daily basis.
I now awake each and every morning (anywhere from 1am - 5am) to a violent headache that only stops when I get up into a sitting position.
It is usually gone within a 1/2 hour of getting up, sometimes sooner.
I am so upset with this!!!!
I see the surgeon a week from tomorrow.
That appointment was suppose to be about the surgery for my L3/4.
Headache or the ability to walk?????????
I was once told that headaches are not an approved reason for cervical spine surgery.
I never pursued it since the headaches were pretty much gone after surgery.
I don't know what is going to happen now?????????????????

Stay tuned for the next episode...……..
To walk, or not to walk, that is the question???????
To have headaches (and sleep) or not to have headaches, that is the 2nd question???????

Wishing you a pain free day,
Ronnie (GRANDMAr)

Hi all!!
It's been a bit of time since I wrote.
For those of you who are new to the group, I also have chronic pain.
After years of shots, procedures, etc. I had surgery on my C5/6 spine.
I was getting horrible headaches every day that woke me up.
It seemed the surgery worked (done in late Feb.).
After surgery, I had only 2 mild headaches, then soon none.
At about week 10, I fell twice. Thank you lumbar! (another story)
Within days, my headaches came back, not daily, however.
At week 12, when I went back for my last cervical check-up,
My surgeon could not help but see there was something going on since I was now walking with a cane (advice from my physical therapist).
Now, the headaches are back fast and furious on a daily basis.
I now awake each and every morning (anywhere from 1am - 5am) to a violent headache that only stops when I get up into a sitting position.
It is usually gone within a 1/2 hour of getting up, sometimes sooner.
I am so upset with this!!!!
I see the surgeon a week from tomorrow.
That appointment was suppose to be about the surgery for my L3/4.
Headache or the ability to walk?????????
I was once told that headaches are not an approved reason for cervical spine surgery.
I never pursued it since the headaches were pretty much gone after surgery.
I don't know what is going to happen now?????????????????

Stay tuned for the next episode...……..
To walk, or not to walk, that is the question???????
To have headaches (and sleep) or not to have headaches, that is the 2nd question???????

Wishing you a pain free day,
Ronnie (GRANDMAr)