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.

Hi Joan. Your story is one of the saddest I have ever heard. I have a funny feeling that your "pioneer of back surgery in Phila." was also my surgeon. He was very highly recommended and I did my homework. Can I call him Dr. "B"? He did my fusion back in 2004 and there was scoliosis as well, so he had to cut me in front and back. I had some bad periods of pain afterwards but the use of Opana seemed to help get me through another few years along with vicodin. About 6 months ago I started to feel real bad pain again. This time I feel it down both my thighs and into my feet. The early part of each day isn't bad but come early afternoon it starts no matter what I do and by 5 pm – it's brutal. I see a pain management office to get these scripts but they don't do a thing and I was searching for people's thoughts on a second operation when I saw your post on here. I guess we all "pale" in comparison, but that doesn't make the pain go away.

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Hi. I am a 62-year-old male living on Long Island, NY. I suffered a fracture & spondylolisthesis @ L5/S1 in 1998 & had fusion in 1999. After the surgery the pain never went away & at times was worse. I started pain management in 2001. They gave me different meds that didn't work until I was on the maximum dose of both Oxycontin & Oxycodone. When that wasn't helping, they added Fentanyl patches until I was maxed out on that. Lived like that until 2008. In 2006 I had a spinal cord stimulator (SCS) implanted. I lived this way until 2008 when my family decided I couldn't live like this anymore. Went to The Hospital for Special Surgery (HSS) in June 2008. They did an exploratory. They discovered that the fusion failed, even though numerous surgeons told me all was fine. My exploratory turned into a 6-hour PLIF. Ten days later I had ALIF. They also removed the SCS. It was discovered that I suffer from a severe case of osteoporosis (-3.2). Rehab was tough. Felt better but not great. Was still on all the meds. I retired from my job on disability as I could no longer work. In April 2011, I started having severe pain. Back to HSS. A MRI was done and the diagnosis was a fracture @ L4/L5. Back in the OR & another fusion. In November 2011, the pain was worse. It was discovered that the fusion failed so I had a revision. Fifteen days later I experienced the worst pain so far. It was a cyst @ L4/L5. Emergency surgery. In January 2013, it was discovered the fusion @ L4/L5 failed again. Another revision. Did relatively well but still lots of pain until November 2014 when L3/L4 went. Had a good 2015 but in February 2016 L1/L2/L3 went. They fused T12 to L3. In December 2016, guess what, L1/L2 failed and another revision. Moving on to September 2018 when C3 to C7 went. Had 4 level Anterior Cervical Discectomy (ACDF). Please don't question my surgeon's abilities as he is one of the top spinal surgeons dealing with diseased spines and IT IS HSS! I have had 2nd, 3rd, 4th and even 5th opinions from some of the top spine surgeons in the US including The Mayo Clinic. This brings me to the present day. I have been having in pain in my lower lumbar, groin and hips for months and it has escalated to the point where I have trouble walking. Had an X ray taken and sent to my doc. He said my Sacroiliac (SI) Joints (cartilage & ligaments torn due to excessive motion) and right hip are completely shot. I did an Epidural Steroid Injection (ESI) & then Radio Frequency (RF) nerve ablation. Followed by (after the proper waiting time) a series of 3 more ESI’s over 6 weeks as I need a week in between to go back on my blood thinners. The shots did not help at all (this is a complete negative test for SIJ instability). My surgeon called me in for a chat this past week. The result being I have scheduled Bilateral Open SIJ fusion. Evidently this is a rarely used surgery as Minimally Invasive Surgery is the procedure of choice. He feels with all the damage,Open is the way to go. In addition, I have had 2 heart attacks and a mini stroke which is why I need to be able to walk every day. I have a Service Dog (yes, a real one) to help pick up the numerous things I drop (due to cervical fractures), retrieve things, help me balance, and the best part, he keeps me smiling. As this disease eats my bones, I will eventually need a bigger dog to help with my balance & then later down the road, to pull me in a wheelchair.
My advice to all in pain:
1) Pain is here forever
2) Opioids will rarely help the pain
3) Go to the best surgeon even if you need to travel
4) Get a 2nd & 3rd opinion as this surgery will affect your life
5) Do any and everything possible not to have a fusion unless it is a must
6) If nothing helps, try marijuana (in legal states) as I have found that this is my best pain relief
7) Most of all, find happiness in anything.
Thanks for reading. I feel better already.

20181017_193845406_iOS

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@jmweissler

Hi. I am a 62-year-old male living on Long Island, NY. I suffered a fracture & spondylolisthesis @ L5/S1 in 1998 & had fusion in 1999. After the surgery the pain never went away & at times was worse. I started pain management in 2001. They gave me different meds that didn't work until I was on the maximum dose of both Oxycontin & Oxycodone. When that wasn't helping, they added Fentanyl patches until I was maxed out on that. Lived like that until 2008. In 2006 I had a spinal cord stimulator (SCS) implanted. I lived this way until 2008 when my family decided I couldn't live like this anymore. Went to The Hospital for Special Surgery (HSS) in June 2008. They did an exploratory. They discovered that the fusion failed, even though numerous surgeons told me all was fine. My exploratory turned into a 6-hour PLIF. Ten days later I had ALIF. They also removed the SCS. It was discovered that I suffer from a severe case of osteoporosis (-3.2). Rehab was tough. Felt better but not great. Was still on all the meds. I retired from my job on disability as I could no longer work. In April 2011, I started having severe pain. Back to HSS. A MRI was done and the diagnosis was a fracture @ L4/L5. Back in the OR & another fusion. In November 2011, the pain was worse. It was discovered that the fusion failed so I had a revision. Fifteen days later I experienced the worst pain so far. It was a cyst @ L4/L5. Emergency surgery. In January 2013, it was discovered the fusion @ L4/L5 failed again. Another revision. Did relatively well but still lots of pain until November 2014 when L3/L4 went. Had a good 2015 but in February 2016 L1/L2/L3 went. They fused T12 to L3. In December 2016, guess what, L1/L2 failed and another revision. Moving on to September 2018 when C3 to C7 went. Had 4 level Anterior Cervical Discectomy (ACDF). Please don't question my surgeon's abilities as he is one of the top spinal surgeons dealing with diseased spines and IT IS HSS! I have had 2nd, 3rd, 4th and even 5th opinions from some of the top spine surgeons in the US including The Mayo Clinic. This brings me to the present day. I have been having in pain in my lower lumbar, groin and hips for months and it has escalated to the point where I have trouble walking. Had an X ray taken and sent to my doc. He said my Sacroiliac (SI) Joints (cartilage & ligaments torn due to excessive motion) and right hip are completely shot. I did an Epidural Steroid Injection (ESI) & then Radio Frequency (RF) nerve ablation. Followed by (after the proper waiting time) a series of 3 more ESI’s over 6 weeks as I need a week in between to go back on my blood thinners. The shots did not help at all (this is a complete negative test for SIJ instability). My surgeon called me in for a chat this past week. The result being I have scheduled Bilateral Open SIJ fusion. Evidently this is a rarely used surgery as Minimally Invasive Surgery is the procedure of choice. He feels with all the damage,Open is the way to go. In addition, I have had 2 heart attacks and a mini stroke which is why I need to be able to walk every day. I have a Service Dog (yes, a real one) to help pick up the numerous things I drop (due to cervical fractures), retrieve things, help me balance, and the best part, he keeps me smiling. As this disease eats my bones, I will eventually need a bigger dog to help with my balance & then later down the road, to pull me in a wheelchair.
My advice to all in pain:
1) Pain is here forever
2) Opioids will rarely help the pain
3) Go to the best surgeon even if you need to travel
4) Get a 2nd & 3rd opinion as this surgery will affect your life
5) Do any and everything possible not to have a fusion unless it is a must
6) If nothing helps, try marijuana (in legal states) as I have found that this is my best pain relief
7) Most of all, find happiness in anything.
Thanks for reading. I feel better already.

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@jmweissler, Good afternoon. You have been through the wringer. And yet your sense of humor shows through. At first glance, I noticed that you wrote about some spine fractures. What medications are you taking for the severe osteoporosis? Are they working?

I would also suggest that you explore the possibility of getting some benefit from MFR, Myofascial Release. May I introduce @jenniferhunter. She has great knowledge and experience with spine health and MFR. You have climbed the proverbial mountain. Now, the challenge is to keep you safe and protected from both inner and outer harm. May you have comfort and a bit of joy today.

I just reread your list of health care learnings.
They are very good and I agree with almost every one.. Here are my edits and add ons for you. Thanks for breaking the ice and carrying the heavy load.
1. Pain is here forever. Even Buddha said that suffering is inevitable for human beings.
2. Opioids were never designed to be more than a temporary solution while the body healed.
3. Surgeon choice is the most important choice you will ever make
4. 2nd and 3rd opinions…..I have had repeats with the same surgeon for another joint, and he has made the referrals to cervical and hand surgeons.
5. I would extend that one to include any surgery. I have now had 13 orthopedic surgeries…..and am quite highly suspicious that this neuropathy is a result of those surgeries. Our bodies don't forget easily.
6. Medical cannabis is by far the most promising way to prevent pain and regain your health.
7. Find joy and happiness……be content and at ease. This seems easy but requires you to love and have compassion for yourself first.

Great to have you on the team…..may you be free of suffering today.

Chris

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While they're in there doing all those surgeries why not have him drop in a pain pump? It's amazing what 3 mg of Dilaudid released directly into your spinal fluid over 24 hours will do to deal with pain. Even after large doses of Narcotics stop working for you the pain pump continues to work. I'm going on for years with mine I have a history similar to yours and I don't get total relief but life is livable again with the pain pump. If you want to know more just ask

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i have had two radio frequency procedures on my back but they didnt last long. are there other avenues i can take for the pain. the doctors say i have osteoarthritis.

Liked by grandmaR

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Milligram shows L- 3 disc blown out now. Broke four vertebrates seventeen years ago and suffer all the time , doc just likes to to keep the opiates at bay , four 10mg tabs hydrocodone. Second B.S. nero. stem is disturbing tissues to much. Leg feels like it fills and won't empty ,pain is through the roof 24/7 , I'm useless. LelandMiller 05/05/1955 Ret. Permanently disabled .dues paid ,P.S. , Leland waiting for surgeon to call . I have had surgery before and I am seeking an alternative for a blown disc.

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@polygons

Milligram shows L- 3 disc blown out now. Broke four vertebrates seventeen years ago and suffer all the time , doc just likes to to keep the opiates at bay , four 10mg tabs hydrocodone. Second B.S. nero. stem is disturbing tissues to much. Leg feels like it fills and won't empty ,pain is through the roof 24/7 , I'm useless. LelandMiller 05/05/1955 Ret. Permanently disabled .dues paid ,P.S. , Leland waiting for surgeon to call . I have had surgery before and I am seeking an alternative for a blown disc.

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Hi @polygons, welcome to Mayo Clinic Connect. You'll notice that I moved your message to this discussion called "Chronic Back Pain for Years" in the Spine Health group (https://connect.mayoclinic.org/group/spine-health/) I did this so that you can connect with other members like @jmweissler @artscaping @wsh66 and others who also deal with chronic back pain and issues with discs.

Leland, I can understand looking for an alternative for a blown disc and hope you hear from your surgeon soon. You mention that your leg fills and won't empty. Is this a symptom you've had for a while? Do you have edema?

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@polygons

I learned a few months ago that I had severe spinal stenosis at L3-L4, and L4-L5, with no sign of a disc in that area. Ten days ago I had surgery for the stenosis. It was keeping a tight squeeze on the nerves going through the canal. The neurosurgeon said that it's possible that dealing with the stenosis could reduce the neuropathy pain in my feet and ankles, which it did for a few days, but now it's back to the level of pain before surgery. I'm trying to remain hopeful that I'll have some level of pain relief after my back has a bit more time to heal, but it's not looking good at this point.

The surgeon didn't seem to be concerned about the disc. I'm going to ask her about it at my appointment this Thursday.

Jim

Liked by grandmaR

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@jimhd

@polygons

I learned a few months ago that I had severe spinal stenosis at L3-L4, and L4-L5, with no sign of a disc in that area. Ten days ago I had surgery for the stenosis. It was keeping a tight squeeze on the nerves going through the canal. The neurosurgeon said that it's possible that dealing with the stenosis could reduce the neuropathy pain in my feet and ankles, which it did for a few days, but now it's back to the level of pain before surgery. I'm trying to remain hopeful that I'll have some level of pain relief after my back has a bit more time to heal, but it's not looking good at this point.

The surgeon didn't seem to be concerned about the disc. I'm going to ask her about it at my appointment this Thursday.

Jim

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Hopefully things will get better. I’m guessing it is possible as you get a bit more active at home you may stir things up a bit and have some swelling in the area. Which in turn will increase pain. I would think if the surgeon saw anything resembling a ruptured disc during surgery, they would have dealt with it at that time. Just remember, the patients I would see come back for a redo were almost always the ones who didn’t listen or follow instructions for postop care! Ice/cold packs are your friends!

Liked by lioness, migizii

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@jimhd

@polygons

I learned a few months ago that I had severe spinal stenosis at L3-L4, and L4-L5, with no sign of a disc in that area. Ten days ago I had surgery for the stenosis. It was keeping a tight squeeze on the nerves going through the canal. The neurosurgeon said that it's possible that dealing with the stenosis could reduce the neuropathy pain in my feet and ankles, which it did for a few days, but now it's back to the level of pain before surgery. I'm trying to remain hopeful that I'll have some level of pain relief after my back has a bit more time to heal, but it's not looking good at this point.

The surgeon didn't seem to be concerned about the disc. I'm going to ask her about it at my appointment this Thursday.

Jim

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Hi Jim,
I had an X-LIFT FUSION on L3/L4 three years ago.
Although it took care of my pain, it did nothing for my neuropathy.
I was told that it depends on WHY you have the neuropathy.
Did you have it before the surgery?
Could the damage be permanent?
Do you have diabetes?
There are many reasons for the neuropathy.
Best of luck in your recovery process!
Ronnie

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@lorettabl

i have had two radio frequency procedures on my back but they didnt last long. are there other avenues i can take for the pain. the doctors say i have osteoarthritis.

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Hi!
I had the radio frequency, too. I found it useless.
Good luck!
Ronnie

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Hi All!
For many years, I suffered from back pain and later on pain from my shoulder blade to my fingers. On the advice of my orthopedic surgeon, I went to see a pain management doctor.
I went to several pain management doctors for over 10 years. I went through so many different things in order to get relief. All sorts of shots, radio frequency, chiropractors, cupping, PT, etc. I did finally find a pain doc who was able to help me and for about 4 years, he would get me comfortable for about 3-4 weeks at a time. This was huge for me. However, after a few years, all his efforts stopped working. Against his advice, I decided I could not take it any more. I had no quality of life.
I researched and researched and decided to see a neurosurgeon. I decided to take my chances with surgery. After lots of tests, we found my spine to be a mess from top to bottom. The surgeon had to narrow down where to start. He decided on C5/6 and L3/4.
First, I had my discs at C5/6 replaced. The surgery went well (out patient) and the recovery was easy.
Six months later I had an X-LIFT FUSION on L3/4. That surgery went well, too, but recovery was HORRIBLE!!!!!!!!!!! It took over 5 weeks for the horrible pain to subside. I hate pain killers so I only took them at night in order to sleep.
It's been about just over 3 years and I can happily say that the pain that I had is gone. I do sometimes need a shot on my cervical spine, but that is because there are still issues there, but not bad enough for me to want to get surgery.
The BIGGEST come away…..
1, I know many people who have gone through back surgery and said it failed. After conversations, I realized that it was not the surgery that failed, but the patient.
2. It takes approximately 18 months for 2 years for the internal healing to be COMPLETE.
3. Although it has been years since my surgeries, I STILL baby my back as if I just had surgery. I do NOT do anything to strain my back. I DO NOT make any quick moves, lift anything heavy, over-extend my body bending or stretching, I exercise regularly.
4. I listen to my body and when I am having pain or discomfort, I rest. I do not push through the pain.
I hope this helps someone and I wish everyone good health and a painfree life!
Ronnie

Liked by migizii, pines, wisco50

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@grandmar

Hi All!
For many years, I suffered from back pain and later on pain from my shoulder blade to my fingers. On the advice of my orthopedic surgeon, I went to see a pain management doctor.
I went to several pain management doctors for over 10 years. I went through so many different things in order to get relief. All sorts of shots, radio frequency, chiropractors, cupping, PT, etc. I did finally find a pain doc who was able to help me and for about 4 years, he would get me comfortable for about 3-4 weeks at a time. This was huge for me. However, after a few years, all his efforts stopped working. Against his advice, I decided I could not take it any more. I had no quality of life.
I researched and researched and decided to see a neurosurgeon. I decided to take my chances with surgery. After lots of tests, we found my spine to be a mess from top to bottom. The surgeon had to narrow down where to start. He decided on C5/6 and L3/4.
First, I had my discs at C5/6 replaced. The surgery went well (out patient) and the recovery was easy.
Six months later I had an X-LIFT FUSION on L3/4. That surgery went well, too, but recovery was HORRIBLE!!!!!!!!!!! It took over 5 weeks for the horrible pain to subside. I hate pain killers so I only took them at night in order to sleep.
It's been about just over 3 years and I can happily say that the pain that I had is gone. I do sometimes need a shot on my cervical spine, but that is because there are still issues there, but not bad enough for me to want to get surgery.
The BIGGEST come away…..
1, I know many people who have gone through back surgery and said it failed. After conversations, I realized that it was not the surgery that failed, but the patient.
2. It takes approximately 18 months for 2 years for the internal healing to be COMPLETE.
3. Although it has been years since my surgeries, I STILL baby my back as if I just had surgery. I do NOT do anything to strain my back. I DO NOT make any quick moves, lift anything heavy, over-extend my body bending or stretching, I exercise regularly.
4. I listen to my body and when I am having pain or discomfort, I rest. I do not push through the pain.
I hope this helps someone and I wish everyone good health and a painfree life!
Ronnie

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@grandmar Hi Linda here I'm slo glad your fusion helped you with your back pain I remember how you suffered Happy for you

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@lioness

@grandmar Hi Linda here I'm slo glad your fusion helped you with your back pain I remember how you suffered Happy for you

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Thank you Linda. I remember you, too!
Ronnei

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@grandmar

Hi All!
For many years, I suffered from back pain and later on pain from my shoulder blade to my fingers. On the advice of my orthopedic surgeon, I went to see a pain management doctor.
I went to several pain management doctors for over 10 years. I went through so many different things in order to get relief. All sorts of shots, radio frequency, chiropractors, cupping, PT, etc. I did finally find a pain doc who was able to help me and for about 4 years, he would get me comfortable for about 3-4 weeks at a time. This was huge for me. However, after a few years, all his efforts stopped working. Against his advice, I decided I could not take it any more. I had no quality of life.
I researched and researched and decided to see a neurosurgeon. I decided to take my chances with surgery. After lots of tests, we found my spine to be a mess from top to bottom. The surgeon had to narrow down where to start. He decided on C5/6 and L3/4.
First, I had my discs at C5/6 replaced. The surgery went well (out patient) and the recovery was easy.
Six months later I had an X-LIFT FUSION on L3/4. That surgery went well, too, but recovery was HORRIBLE!!!!!!!!!!! It took over 5 weeks for the horrible pain to subside. I hate pain killers so I only took them at night in order to sleep.
It's been about just over 3 years and I can happily say that the pain that I had is gone. I do sometimes need a shot on my cervical spine, but that is because there are still issues there, but not bad enough for me to want to get surgery.
The BIGGEST come away…..
1, I know many people who have gone through back surgery and said it failed. After conversations, I realized that it was not the surgery that failed, but the patient.
2. It takes approximately 18 months for 2 years for the internal healing to be COMPLETE.
3. Although it has been years since my surgeries, I STILL baby my back as if I just had surgery. I do NOT do anything to strain my back. I DO NOT make any quick moves, lift anything heavy, over-extend my body bending or stretching, I exercise regularly.
4. I listen to my body and when I am having pain or discomfort, I rest. I do not push through the pain.
I hope this helps someone and I wish everyone good health and a painfree life!
Ronnie

Jump to this post

I had Vertiflex surgery at pain clinic a month ago for stenosis the incision was only 1 inch long but I still have nerve pain at the incision… I’m 75 yrs old and I’m wondering if a small incision is it normal to still be hurting after surgery for it’s not severe but just a dull pain and my back is really weak so my question is this normal ?

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