Sacroiliac joint pain and my introduction

Posted by mdmo @mdmo, Jul 14, 2018

I'm a female 60 years old. I have a titanium H cage from L-5-L2. I have post lamenectomy syndrome, AKA Failed Back Syndrome, AKA Arachnoditis. They've punctured my dura space more than 6 times requiring a "blood patch" 4 times. I have a spinal cord stimulator and a implanted intrathecal morphine pain pump. They had to use donor bone for my fusion due to my arthritic hips. So I also got a bone growth stimulator thrown in for good measure.
I lived in Texas for a while and the pain management doctor insisted on doing epidural steroid injections. I had no idea how bad they were for you. I was given 13 ESI's in 12 weeks.
I got so sick one day vomiting and passed out.
Rushed to ER with a Addisions crisis. I didnt even know I had Addison's disease. After all the tests were done yes I was told my adrenal glands were not functioning and i almost died in the hospital. Now i have to take 15 mg of Hydrocortisone (more steroids) in divided doses the rest of my life because of those steroid injections. Malpractice, oh you bet. In Texas unless you die and your case is worth multi millions you cant get anyone to touch your case.
I turned this doctor into the medical board, they called me 1 time, I never heard another word.
I'm in Missouri now. My current pain management doctor is weaning me off my pump by 15% per week. No withdrawal symptoms so good so far.
I've had radiofrequency ablation on my SI joints, no good. I'm taking Ultram 50mg 3 times a day now. How do y'all manage your SI joint pain?
Thank you for your time and support.

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@bl780349

I had Spinal Fusion in 2013 and 2015 at Mayo in Jacksonville, Fl. I did well for many years. The fused sections became so painful on my hips. I’d read about Dr. Bydon doing some stem cell research so I decided to see if I was a candidate. I was not. Dr. Bydon did test and decided to remove my hardware. After surgery he told me all of the hardware used was too large for my size. I’m 5’3 and 135lbs.
I also had a fusion on my neck the next day after hardware removal. This was all done a couple of years ago. Dr. Bydon sent me to Dr. William Cross. I’d read his reviews and after many test I was definitely a candidate for surgery. January 21, 2022 surgery was performed bilateral.
Tomorrow marks three weeks.
Oh, prior to having this done Dr. Michael Tauton performed left hip replacement.
I live in Alabama and we drove for this surgery!
Mayo Clinic is special to our family. There's more to my history of surgeries!

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I'm following your comments on your history of surgeries at Mayo Jax, I hope you will continue in more detail. I had fusion there in Jan. 2021 of L4-5, it has healed well.
I do have pain below that area though on my lower left side; I'm not sure of its cause as I have degeneration in my SI joints, L5, and a tarlov cyst at S2. I saw the NS in December 2021, he said after a ct scan it's not fully healed, just keep walking as able and wait another 6-12 months. I am taking supplements hoping it helps. All the best on your recovery!

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@ga29

I'm following your comments on your history of surgeries at Mayo Jax, I hope you will continue in more detail. I had fusion there in Jan. 2021 of L4-5, it has healed well.
I do have pain below that area though on my lower left side; I'm not sure of its cause as I have degeneration in my SI joints, L5, and a tarlov cyst at S2. I saw the NS in December 2021, he said after a ct scan it's not fully healed, just keep walking as able and wait another 6-12 months. I am taking supplements hoping it helps. All the best on your recovery!

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Good morning,
I began to have muscle pain in the middle of my back on each side of the fused spin. As time went on I would get a massage to see if that would help. It never did. I was in constant pain. I would wake all during the night in pain. I couldn’t enjoy standing, walking, gardening or even riding in a car. I knew the SI joints were a problem. It can be one side or both when could be the pain generator. Mine was both. I’m going on my 4th after surgery and still no pain.
I’ll be happy to answer any questions you have.

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@bl780349

Good morning,
I began to have muscle pain in the middle of my back on each side of the fused spin. As time went on I would get a massage to see if that would help. It never did. I was in constant pain. I would wake all during the night in pain. I couldn’t enjoy standing, walking, gardening or even riding in a car. I knew the SI joints were a problem. It can be one side or both when could be the pain generator. Mine was both. I’m going on my 4th after surgery and still no pain.
I’ll be happy to answer any questions you have.

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Thanks for sharing. For your SI joint pain, mine is Mostly on the left side when I’m up and trying to do things like work in the kitchen. I had PT, trying to build up my core strength after my fusion. She said my periformis (sp?) was involved with my pain.
Since the NS doesn’t say more than I need more healing, I’m left guessing.
Glad you’re doing so well!

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@ga29

Thanks for sharing. For your SI joint pain, mine is Mostly on the left side when I’m up and trying to do things like work in the kitchen. I had PT, trying to build up my core strength after my fusion. She said my periformis (sp?) was involved with my pain.
Since the NS doesn’t say more than I need more healing, I’m left guessing.
Glad you’re doing so well!

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You’re welcome. I highly recommend Dr. William Cross at Mayo. There are so many test to be done to help clear up where the pain is generating from.
Hope you fell better soon.

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It has been suggested that I have SI joint injection. The pain I have is mostly at night in this area (although sitting in a straight chair for a long period tends to make that area of back ache. The pain wakes me and cannot lie on either side now. Have both hips replaced due to high dose steroid induced AVN and as a result have concerns w/ steroids being injected in my body or orally. One hip is particularly bad with a feeling of fibrous tissue “rolling” across the joint at times during the day and told there is bursitis. Walking is not particularly painful, but can only walk or stand for limited amounts…but rising up and down from a chair can send shooting pains to my hip. Doc feels could be related to the SI joint being inflamed and has suggested injections. Not sure if this is chicken and egg situation with whether the hip issue/bursitis caused the SI joint or vice veresa..but the side hip issue came first. Would like to know more about the SI injection and how often it actually yields good results

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I've had SI joint pain for 30+ yr. I went to ortho surgeons, neurosurgeons and the Emory Spine Institute. They ALL told me the same thing: we don't' know what is wrong but don't let anyone cut you. I went to a different ortho surgeon (probably my 4th such MD) and he said he couldn't help me but referred me to a chiropractor. i resisted but he insisted…so I went. She reduced my pain by 50% the 1st time I saw her and 100% the 2nd time. It lasted for months the 1st times but gradually , over the last 7 yr. or so, it got down to only days between needing adjustments. I plan on having the SI joints fused this summer. In the mean time, I saw a YouTube video about my condition. The chiro in the video called it SI Joint Instability…the 1st medical person I've heard put a name to it. He showed some exercises to help it and recommended an SI belt. I bought the belt on the inet and wearing it properly I can play golf pain-free! I used to wear a bulky 8" wide support belt that also allowed pain-free golf but it was cumbersome. I'll probably still get the fusion because I don't want to have to wear a belt 24/7.

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@sus34

It has been suggested that I have SI joint injection. The pain I have is mostly at night in this area (although sitting in a straight chair for a long period tends to make that area of back ache. The pain wakes me and cannot lie on either side now. Have both hips replaced due to high dose steroid induced AVN and as a result have concerns w/ steroids being injected in my body or orally. One hip is particularly bad with a feeling of fibrous tissue “rolling” across the joint at times during the day and told there is bursitis. Walking is not particularly painful, but can only walk or stand for limited amounts…but rising up and down from a chair can send shooting pains to my hip. Doc feels could be related to the SI joint being inflamed and has suggested injections. Not sure if this is chicken and egg situation with whether the hip issue/bursitis caused the SI joint or vice veresa..but the side hip issue came first. Would like to know more about the SI injection and how often it actually yields good results

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I have both hips with their second prosthetics and many years of SI pain , bursitis and piriformis pain both before and after. Have had steroids, PT and chiropractic care.
The best and longest relief has come from icing and consistent stretching.
I lie on bags of frozen peas or corn. Once pain is under control, daily stretches- my ortho, PT and chiropractor all showed me different ones, and I eventually created a routine that works for me. And yes, it hurts like you cannot believe when you start-took me 2 weeks to see results the first time. If I get lazy and skip am stretching, or spend too many hours in the car, it only takes about 3 days to get back on track. Getting up off the floor is the toughest part.

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@sueinmn

I have both hips with their second prosthetics and many years of SI pain , bursitis and piriformis pain both before and after. Have had steroids, PT and chiropractic care.
The best and longest relief has come from icing and consistent stretching.
I lie on bags of frozen peas or corn. Once pain is under control, daily stretches- my ortho, PT and chiropractor all showed me different ones, and I eventually created a routine that works for me. And yes, it hurts like you cannot believe when you start-took me 2 weeks to see results the first time. If I get lazy and skip am stretching, or spend too many hours in the car, it only takes about 3 days to get back on track. Getting up off the floor is the toughest part.

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So good to hear you have the pain under control. Sounds like may be similar to what I have going on. Would love to hear what your routine is tha is working.

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@sus34

So good to hear you have the pain under control. Sounds like may be similar to what I have going on. Would love to hear what your routine is tha is working.

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Routine:
Stretch before rising: pelvic tilts and circles, side to side knee twists, spine lengthening, knees to chest, knees bent, ankle on knee, raise knee by pulling from behind.
Stretches after rising:
Ear to shoulder, neck range of motion, bend from waist as able, lunge and hold. Reaching as high as possible

Ice sore points lying flat in back, knees bent, then alternate pulling knes to chest and straightened leg.

No kidding, these hurt when you start, and some motions may be puny. But the more you do, the easier they get, and eventually you look forward to loosening up.

Also – move and loosen up at least 5-10 minutes every hour. I pace and wriggle my way through Zoom meetings, take walking talks, even sometimes stand when I sew.

Take NSAID or Tylenol if you can. Use NSAID rubs (like Voltaren) on sore spots.

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My daughter had PRP- platelet rich plasma- treatments on both SI joint and knee. She has had SI joint pain, crippling at times, for years. The PRP eliminated pain in 24 hours, and the effect lasted 6 years. They take blood out in a large syringe, spin it, and inject it in the area of pain.

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