Chronic Pain even after several back surgeries- suggestions?

Posted by s4vageb8 @s4vageb8, Nov 9, 2021

I am hoping to get some guidance as to what my options to get my pain under control might be.
Quick background: I was hit by a DUI in 1985 and that started my back issues. Pain was managed through PT, Chiropractic, and medication until 2009 when a microdiscectomy in 2009 and 2010 was done. When I could no longer stand, I had a fusion L5/S1 done. Things were "OK" after that…..until:
June of 2019 some kid texting ran a red light and I T-boned his vehicle at 45 mph.
This crash caused multiple issues and dramatically increased my back pain. As a result, I had a bilateral SI joint fusion June 2020 and then a fusion L3/4 December 2020.
Despite all this (with lots of PT, acupuncture, medication, medical marijuana, pain creams) I am STILL in chronic lower back pain, my left thigh is numb (since the L3/4 fusion) and my left foot has varying degrees of numbness- it increases with back pain increases.
Since the two most recent surgeries, the pain has only slightly decreased. I have some "tolerable" days and mostly "intolerable ones".
I can stand most of the day just fine. However, most of the pain is from sitting and lying down. If I bend forward (like getting my sunglasses from the glovebox in my car) – the pain in my right hip is intense! The pain is awful If I lay down to sleep- if I rock my hips from left to right- that increases pain. I can only sleep an hour or so until I must get up and apply pain cream to my back (and neck- sore from tossing all night). If I stand up from sitting- it takes me a few minutes before I can stand up straight- the pain is high when doing so.
I have had many xrays, MRI's, and CT scans. I got a second opinion from a top Neurosurgeon at Penn, he says the hardware looks OK and sees nothing that concerns him. I have met with two pain management doctors, one suggests seeing if I am a candidate for a spinal cord implant, the other pain doc doesn't really like them.
My doctors all say they have tried everything, but before I get a spinal cord implant device, I gotta believe more diagnostic work can be done? I feel the implant will just "mask" the real issue. I really have to find out what is causing my pain!
If anyone has suggestions, it would be very much appreciated. I am at the end of my pain-tolerance-rope, Thank you

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As someone who has long suffered from chronic lower back pain I empathize with you. In my situation, pain that emerged in my hip (as a result of extended sitting or, as you mention, turning to retrieve gasses from a glove box) was thought to be a result of my back issues. However, after seeking a few other opinions, it appears that the hip pain is separate from the back issues and is being treated as a Labral tear. All this to say that if the doctors haven’t done so already, it may be worth looking at your symptoms as separate entities. I pray for a remedy to your pain issues.

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You've had multiple traumatic insults to your back and hips. The main supporting mechanisms our bodies are made of and they have been severely interrupted and impacted. I'd be surprised if you didn't have residual pain. I have my fusion in 1992 L5-S1 and for some reason L5 is not secured in the fusion. No screws ever connected the plates to my L5 so I have intermittent sciatic bilateral leg pain. I've been offered new hardware but to remove stainless steel implants after 29 years for titanium will cause me a world of pain and at 69 I'm not doing it. So I live with chronic sciatic pain and spinal OA and peripheral neuropathy. I do not ever expect to be pain free but have found that a combination of buprenorphine 20mcg for pain, baclofen 20mg for muscle spasm, turmeric 3 Gm/day for anti-inflammatory (allergic to NSAIDs) and THC-CBD oil which has finally allowed me to almost stop oxycodone for break through pain. I'm amazed that by increasing my CBD and decreasing my THC I've gotten better and sustained relief. You need to gain some level of acceptance regarding your pain and I also suggest mindfulness meditation which I studied 4-5 years ago and I meditate daily. I hope you find some type of relief.

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@s4vageb8 Hello and welcome to Connect. I'm sorry for your long history of pain. You have been through a lot over the years, it must be exhausting to you. I admire that you recognize having an implant will "mask" the real problem. Masking can be tiresome plus add additional repercussions to our body and mind.

When chronic sets in and there is no longer a fix or cure, we have to problem solve and strategize to find ways of living our best life, given our circumstances. It becomes about personal management, education and balance, taking the reigns from doctors, relying on ourselves and the tools we apply.

Mayo Clinic offers a phenomenal pain rehab program focused on Central Sensitization Syndrome (CSS). I recommend it and attended last year, it was life changing.

Here are two links on CSS and the Mayo Pain Rehab Center (PRC).

Central Sensitization Syndrome:
https://youtu.be/8defN4iIbho
Pain Rehabilitation Center:
https://www.mayoclinic.org/departments-centers/pain-rehabilitation-center/sections/overview/ovc-20481691
Have you ever tried an all inclusive rehab program? Do you mind letting me know your thoughts about the video presentation by Dr. Sletten?

I'd be happy to answer any questions you have.

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@rwinney

@s4vageb8 Hello and welcome to Connect. I'm sorry for your long history of pain. You have been through a lot over the years, it must be exhausting to you. I admire that you recognize having an implant will "mask" the real problem. Masking can be tiresome plus add additional repercussions to our body and mind.

When chronic sets in and there is no longer a fix or cure, we have to problem solve and strategize to find ways of living our best life, given our circumstances. It becomes about personal management, education and balance, taking the reigns from doctors, relying on ourselves and the tools we apply.

Mayo Clinic offers a phenomenal pain rehab program focused on Central Sensitization Syndrome (CSS). I recommend it and attended last year, it was life changing.

Here are two links on CSS and the Mayo Pain Rehab Center (PRC).

Central Sensitization Syndrome:
https://youtu.be/8defN4iIbho
Pain Rehabilitation Center:
https://www.mayoclinic.org/departments-centers/pain-rehabilitation-center/sections/overview/ovc-20481691
Have you ever tried an all inclusive rehab program? Do you mind letting me know your thoughts about the video presentation by Dr. Sletten?

I'd be happy to answer any questions you have.

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In reply to @rwinney… do you know if Medicare with supplemental coverage pays for this program? That for all your information and compassion to this topic❤️

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@migizii

In reply to @rwinney… do you know if Medicare with supplemental coverage pays for this program? That for all your information and compassion to this topic❤️

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Yes, @migizii it does! Medicare and the supplemental insurance I selected specifically for out of network coverage were accepted. I was impressed and relieved that the rehab program was covered. Hotel, food and travel however were my responsibility

Its my pleasure to help in any way I'm able on this topic. May I ask if you are considering attended the pain rehab program? If so, which Mayo facility are you nearest?

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In reply to @rwinney….thanks so much for this information! I’ve been debating requesting participating in the 3 week program for about a year now. I had been accepted in 2019, but broke my foot which caused me to lose the opportunity as I couldn’t participate in the exercise portion. Fast forward to now and my last surgery on my foot was 3/21 and I can now sustain even 45-60 minutes of walking, so I could do the program again (finally). However, I take one medication they wanted to wean me off of when I was originally approved and I have no interest in doing this as I am finally getting good rest (I saw a sleep specialist which was a recommendation from my fibromyalgia doctor at Mayo after being diagnosed in 2017).
Thus, I am conflicted regarding the one medication but would like to continue to learn more positive ways to manage my chronic pain issues (fibromyalgia, chronic migraines, arthritis, and the residual effects of my foot). I live about six hours north of the Rochester campus

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Its great news that you have recovered from foot surgery and have mobility back. I understand your concern about weaning off medication. I had fear weaning off my meds because I couldnt understand a better more healthy way. May I ask what that one medication is?

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@migizii

In reply to @rwinney….thanks so much for this information! I’ve been debating requesting participating in the 3 week program for about a year now. I had been accepted in 2019, but broke my foot which caused me to lose the opportunity as I couldn’t participate in the exercise portion. Fast forward to now and my last surgery on my foot was 3/21 and I can now sustain even 45-60 minutes of walking, so I could do the program again (finally). However, I take one medication they wanted to wean me off of when I was originally approved and I have no interest in doing this as I am finally getting good rest (I saw a sleep specialist which was a recommendation from my fibromyalgia doctor at Mayo after being diagnosed in 2017).
Thus, I am conflicted regarding the one medication but would like to continue to learn more positive ways to manage my chronic pain issues (fibromyalgia, chronic migraines, arthritis, and the residual effects of my foot). I live about six hours north of the Rochester campus

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Finding a medication that helps with pain reduction is not easy. All you have to do is skip a dose or two to know how much help you are receiving. Neck and low back pain go on and on in females.

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@rwinney

Its great news that you have recovered from foot surgery and have mobility back. I understand your concern about weaning off medication. I had fear weaning off my meds because I couldnt understand a better more healthy way. May I ask what that one medication is?

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@migizii…the medication is clonazepam and it is used to assist with a sleep disorder I was diagnosed with after being diagnosed with fibromyalgia by participating in a sleep study by a sleep specialist. This was done by their recommendation and I have benefitted significantly to be able to have productive sleep patterns again.

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@migizii

@migizii…the medication is clonazepam and it is used to assist with a sleep disorder I was diagnosed with after being diagnosed with fibromyalgia by participating in a sleep study by a sleep specialist. This was done by their recommendation and I have benefitted significantly to be able to have productive sleep patterns again.

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Klonopin is the trade name and is probably the most commonly prescribed benzodiazepine for sleep and anxiety in people with the fibromyalgia syndrome. If you have increased neck pain when you turn your head your FMS is of disc origin until proven otherwise.

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Two suggestions that help me. Dead Sea Salt is applied to the muscles that hurt – it includes magnesium. You can get it on line as a spray, but I also found it at Walgreens in a larger can that comes out as a foam and is much easier to spread. The only negative is that it last 2-4. I find it very helpful for the muscle pain that feels like electricity running the length of my muscle fibers while the CBD takes care of the muscle spasms.
Second thing – I supplement 2, 10mg diazepam tablets with 2 valerian root tablets before bed.

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@fibromyalgia001

Finding a medication that helps with pain reduction is not easy. All you have to do is skip a dose or two to know how much help you are receiving. Neck and low back pain go on and on in females.

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Agreed

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