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.

@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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