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.

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@sandytoes14

@grandmar Ronnie, My husband and I were saying today that we need to return to Hawaii next year. We lived there for nearly 5 years. I know you love it there as much as we do.
A thought on your headache...maybe it's from pollen? I know we still have tree pollen here in FL and I think you are not too far from me. I'm near Tampa.

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Good Morning!

When I was still working (and younger), we went to Hawaii every year for 10 days to a week. These trips made work more tolerable! I truly came home more relaxed and in a much better state of mind!!!!
It is my dream to take my entire family there.
All the kids have been, but I want my grands to experience it, too.
I don't know if they will understand how I feel about Hawaii, but I hope they love it.
It is my hope to be able to take the entire family next year.
I have a time share that I switch over to Hawaii when we go there.
I already saved enough time (points) for rooms for the family for 10 days (going all that way for a week is a lot).
Just hoping something good happens with air fares.
We shall see!!!!!
Where in Hawaii did you live?
Why did you leave (if not too personal)?
I ALWAYS look at real estate in Hawaii.
Maui has gotten toooooooooooo expensive.
We should have bought a condo years ago when we had the opportunity.
We looked at a new built in Lahaina that was VERY reasonable, even for the time, but we chickened out.
It seems that real estate in Waikiki/Honolulu has not risen as much.
But that is a pipe dream.
I'd NEVER see my kids and grands unless I sent them FIRST CLASS air tickets (LOL).
Oh well!

Yes, we are not far from Tampa.
We are in the Lakeland/Bartow area.
We are in Tampa all the time for a variety of reasons including my favorite...…….shopping and my not so favorite...…..docs!!

Yes, we do still have lots and lots of pollen.
My lanai is full of it.
You dust and BAM, it's all over everything, again.
Although your thought is a good one, I don't think it is the pollen since the headaches are only in the early, early morning (or late, late night) and I NEVER open a window in my house and we NEVER leave a door open.
Thanks anyway for the thought!

Mahalo and Aloha!
Ronnie (GRANDMAr)

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New to this group. I've had back pain since I was 33. I'm now in my late sixties. Have had two lumbar fusions. As of three years ago, I have a Medtronic Stimpulation Implant at PRC, pain management in Ormond Beach, FL, which relieved some pain. Got me off the couch, anyway. Now experiencing new type of pain in bilateral hips and the backs of both of my thighs. Yes, I've had the stimulator adjusted two times with no results. Two weeks ago, I had six facet joint injections in my lumbar spine. Experienced a total of two days total relief. On the third day, the pain returned with a vengeance. Now, I'm scheduled for a second set of facet injections. The next step is nerve ablation, which I understand, may last anywhere from six months to one year. I haven't decided on the ablation. So frustrated.

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@ruby2019

New to this group. I've had back pain since I was 33. I'm now in my late sixties. Have had two lumbar fusions. As of three years ago, I have a Medtronic Stimpulation Implant at PRC, pain management in Ormond Beach, FL, which relieved some pain. Got me off the couch, anyway. Now experiencing new type of pain in bilateral hips and the backs of both of my thighs. Yes, I've had the stimulator adjusted two times with no results. Two weeks ago, I had six facet joint injections in my lumbar spine. Experienced a total of two days total relief. On the third day, the pain returned with a vengeance. Now, I'm scheduled for a second set of facet injections. The next step is nerve ablation, which I understand, may last anywhere from six months to one year. I haven't decided on the ablation. So frustrated.

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Hello @ruby2019. You may noticed that I moved your discussion and combined it with another discussion titled, "Chronic Back Pain for Years." I did this so you could meet all of the members on Connect already discussion chronic back pain. If you are replying by email, you can click on VIEW & REPLY to be brought to the new location of your post and so that you can read through some of the other posts from members.

Here are a few other discussions you may find interesting as well:

Spine Health > Facet Joint Injections - Anyone had success? > https://connect.mayoclinic.org/discussion/facet-joint-injections-anyone-had-success/
Spine Health > Chronic Pain and Spinal Fusion > https://connect.mayoclinic.org/discussion/chronic-pain-and-spinal-fusion/
Spine Health > Spine Lumbar fusion surgery > https://connect.mayoclinic.org/discussion/spine-lumbar-fusion-surgery/

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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.

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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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@lorettabl

<p>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.</p>

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My knee and shoulder Dr. told me my fat can be put in my knee for<br>osteoarthritis to *relieve* pain. $4500. no insurance.<br><br>Will still just try for stem cells - $2000. no insurance. Just sayin.<br><br>Mari*a*n<br>

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@lorettabl

<p>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.</p>

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Hello lorettabl and welcome to Connect. Thank you for sharing a bit about yourself and your concerns with low back pain.

I would like you to meet @predictable, @undiagnosed_pain, @sandytoes14, and @amberpep who all have discussed back pain and how they cope with it recently. You may also want to check out these recent threads regarding back pain therapies and ways other members of Connect distract themselves from their pain:

- What distracts you from the pain? http://mayocl.in/2dzZdD9
- Partner with undiagnosed back pain http://mayocl.in/2e9cQM5

Lorettabl, what other types of therapies have you tried other than the radio frequency procedures? Could you tell us more about yourself and your pain? How long have you had the pain? What sort of activities make the pain worse?

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<p>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.</p>

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