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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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rhondas | @rhondas | Jan 20, 2019

Are you considering SI Joint fixation/fusion at Mayo?

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1 reply
dysnotfun | @dysnotfun | Jan 20, 2019
In reply to @rhondas "Are you considering SI Joint fixation/fusion at Mayo?" + (show)
@rhondas

Are you considering SI Joint fixation/fusion at Mayo?

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I am considering anything for relief. Unique situation that I'm having trouble getting care with.

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dysnotfun | @dysnotfun | Jan 21, 2019
In reply to @dysnotfun "@hopeful33250hopeful33250" + (show)
@dysnotfun

@hopeful33250hopeful33250

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After reviewing that link, I have no doubt or question about the pain I'm in. I may contact Mayo this week for a consult. Having a hard time getting help here in Tennessee

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1 reply
Mentor
Teresa, Volunteer Mentor | @hopeful33250 | Jan 21, 2019
In reply to @dysnotfun "After reviewing that link, I have no doubt or question about the pain I'm in. I..." + (show)
@dysnotfun

After reviewing that link, I have no doubt or question about the pain I'm in. I may contact Mayo this week for a consult. Having a hard time getting help here in Tennessee

Jump to this post

@dysnotfun

Here is a link with information on scheduling an appointment, https://www.mayoclinic.org/appointments
I hope you can find some relief. This does seem to be limiting your life to a great extent. Please post again.

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1 reply
dysnotfun | @dysnotfun | Jan 21, 2019
In reply to @hopeful33250 "@dysnotfun Here is a link with information on scheduling an appointment, https://www.mayoclinic.org/appointments I hope you can..." + (show)
@hopeful33250

@dysnotfun

Here is a link with information on scheduling an appointment, https://www.mayoclinic.org/appointments
I hope you can find some relief. This does seem to be limiting your life to a great extent. Please post again.

Jump to this post

@hopeful33250 Thank you Teresa...it really has affected my life greatly, Constant pain. I'm only 50 and other than this SI issue...I'm in great shape.

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Mentor
Teresa, Volunteer Mentor | @hopeful33250 | Jan 21, 2019

:@dysnotfun. I do hope you find some help!

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donniehailey | @donniehailey | Aug 29, 2020
In reply to @predictable "Hi, @mdmo. Justin asked me to give you some information about my experience with sacroiliac (SI)..." + (show)
@predictable

Hi, @mdmo. Justin asked me to give you some information about my experience with sacroiliac (SI) joint pain. I wish I could be more helpful to you in dealing with the conditions and treatments that you have endured. I think, though, that members of Mayo Connect together will provide you plenty of opportunity to talk through the issues you face.

My SI joint turned out to be the site of severe lower back pain that radiated into my Piriformis and Gluteus muscles and down into my upper thigh for several weeks. A spinal pain specialist treated me for several weeks, and a physical therapist tried to help, but in the end, my personal care physician asked if I'd like to try a direct injection of an anti-inflammatory medication into my SI joint. I agreed, and within a few days, my back pain was gone.

In the course of that, we looked at literature on the SI joint. The sum and substance was that the joint pain probably was caused by inflammation of the joint lining, perhaps on both the Sacrum of the spinal column and the pair of Iliacs of the pelvis. The injection in one of the two joints resolved the inflammation, and it hasn't returned in the last four years. In our literature, there was no suggestion of ablation (i.e., removal) of lining of the joints, which seems logical to avoid in dealing with movable joints. Has your new medical team discussed injection in the SI joint(s) as a remedy for your pain? Martin

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Question my dr suggested about si joint injection at mayo. Wanted to know who to make appointment with / dr who did yours. Am very nervous and want to schedule with same dr who did yours please.

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1 reply
susanjd | @susanjd | Dec 14, 2020

It seems as if all of us who suffer from SI joint dysfunction have been through the same (failed) “solutions.” injections, ablations, therapies. PT, and finally! Opioids. The latter is the ONLY relief I have had—-and now there is a war on opioids and doctors are scared to death to prescribe! I am so sick of it and am looking into spinal cord stimulators, of which, of course, there are many. Pain is just debilitating! Does anyone have any positive words for experience with SC stimulators?

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