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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@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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I had my right SI joint fused 4 days ago. I first injured it in 1990. I had been to a neurosurgeon and many orthopedic surgeons including a well-known spine institute and no one could help me. I got the same response over and over: "I don't know what's wrong but don't let anyone cut you." My orthopedic surgeon who implanted my SCS for pain from L3/L4 referred me to a chiropractor he had confidence in. She knew EXACTLY what was wrong and took away my pain in 2 sessions. I went to her for adjustments for 8 yr. but eventually the adjustments weren't lasting very long. They first lasted 4-5 months and, at the end, probably 1 day. Then I discovered an SI belt. I've used that AND IT WORKED VERY WELL but who can wear a tight belt 24/7/365, so I went to my physiatrist and told him that after 8 yr. of chiro adjustments and pain meds he prescribed for me for times in between adjustments, I had finally reached my limit and requested that he fuse my SI joint, what I always saw as a last-ditch effort to escape pain. If I recall correctly (anesthesia fog), the procedure took about 1 hr. Day 4 is better, surgical pain-wise, than Day 3 and I'm now walking without a cane and I have ZERO SI pain. I can only hope that my problem is fixed, no pun intended.

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@scruffy1

I had my right SI joint fused 4 days ago. I first injured it in 1990. I had been to a neurosurgeon and many orthopedic surgeons including a well-known spine institute and no one could help me. I got the same response over and over: "I don't know what's wrong but don't let anyone cut you." My orthopedic surgeon who implanted my SCS for pain from L3/L4 referred me to a chiropractor he had confidence in. She knew EXACTLY what was wrong and took away my pain in 2 sessions. I went to her for adjustments for 8 yr. but eventually the adjustments weren't lasting very long. They first lasted 4-5 months and, at the end, probably 1 day. Then I discovered an SI belt. I've used that AND IT WORKED VERY WELL but who can wear a tight belt 24/7/365, so I went to my physiatrist and told him that after 8 yr. of chiro adjustments and pain meds he prescribed for me for times in between adjustments, I had finally reached my limit and requested that he fuse my SI joint, what I always saw as a last-ditch effort to escape pain. If I recall correctly (anesthesia fog), the procedure took about 1 hr. Day 4 is better, surgical pain-wise, than Day 3 and I'm now walking without a cane and I have ZERO SI pain. I can only hope that my problem is fixed, no pun intended.

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Update: It's not 3.5 weeks since my surgery. No SI pain whatsoever, still a bit of surgical pain.

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@scruffy1

Update: It's not 3.5 weeks since my surgery. No SI pain whatsoever, still a bit of surgical pain.

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@scruffy1 Congrats! That is great news!

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I’ve been suffering from what doctor determined was Sciatica since July. I’ve had two S1 joint injections and 1 nerve block. Nothing has helped. My pain management doc told me yesterday that I cannot take any more steroids. I’m doing PT and taking 2 Advil plus 2 Tylenol every four hours and using ice.
What to do. I’m miserable with pain.

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@bustrbrwn22

@scruffy1 Congrats! That is great news!

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Update: 3 months have passed and no SI joint pain but still some incision site/scar tissue pain. I think I have to stretch it every way possible and probably many times before that subsides.

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@lindy12

I’ve been suffering from what doctor determined was Sciatica since July. I’ve had two S1 joint injections and 1 nerve block. Nothing has helped. My pain management doc told me yesterday that I cannot take any more steroids. I’m doing PT and taking 2 Advil plus 2 Tylenol every four hours and using ice.
What to do. I’m miserable with pain.

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If you have SI problems, look into Prolotherapy.

Worked for my knee.

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