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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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jrbuff | @jrbuff | Dec 8, 2018
In reply to @fonda "If you are a senior on Medicare there are funds available every year to pay for..." + (show)
@fonda

If you are a senior on Medicare there are funds available every year to pay for physical therapy appointments. A physical therapist can check for you as to the amount and help you manage those available funds to the fullest. A PT can show you exercises you can do on your own and also ones he/she can assist you doing. i am 90 years old and would be stiff as a board and confined to a nursing home if it weren't for the PT's in my life.

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Thanks

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jrbuff | @jrbuff | Dec 8, 2018

You are an inspiration to me.

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karolyn | @karolyn | Dec 8, 2018
In reply to @lioness "@karolyn isnt there any other Dr you can go to ? What does your PCP say..." + (show)
@lioness

@karolyn isnt there any other Dr you can go to ? What does your PCP say aboit this ? This Dr should be able to help you with my back issues she has referred me to a neurosurgeon,orthpedic and other Dr,s you dont have to just go to a pain Dr when you do have other choices .Doing exercises at home even seeing you regular Dr and talk with her or dont you have a regular Dr. even call your insurance and they can help you .

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I've asked her for other options she's insisting on this for some reason she brings In a anistilogist he has one star rating I'm willing to do anything but this,I called my insurance they played dumb even after I told them it's not fda aproved and used as off lable,ty for asking and helping I don't know what I do without this sight

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1 reply
lioness | @lioness | Dec 8, 2018
In reply to @karolyn "I've asked her for other options she's insisting on this for some reason she brings In..." + (show)
@karolyn

I've asked her for other options she's insisting on this for some reason she brings In a anistilogist he has one star rating I'm willing to do anything but this,I called my insurance they played dumb even after I told them it's not fda aproved and used as off lable,ty for asking and helping I don't know what I do without this sight

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@karolyn this is a great site Maybe others might be able to help you as they read this.Best of luck

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1 reply
karolyn | @karolyn | Dec 8, 2018
In reply to @lioness "@karolyn this is a great site Maybe others might be able to help you as they..." + (show)
@lioness

@karolyn this is a great site Maybe others might be able to help you as they read this.Best of luck

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Thank you so much god bless and ur help

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pdray | @pdray | Dec 9, 2018

I suffered from SI pain for over 30 years. Early in my diagnosis I went to Cedars-Sinai Spine Center and after an MRI and consultation with 5 Doctors they told me my options were: surgery with 10% probability of success, injections, or take 3 Advil whenever there was pain (which was more than once per day) and wait until another option comes along due to advancing medical knowledge. I opted for Advil. I am now living near Mayo in Rochester and have pain-free for almost 1 year. My solution was a special plan prescribed by Mayo using a Mayo trained physical therapist to strengthen my core muscles (all sides, not just doing sit-ups), proper posture, hip placement, how to walk, how to sit, etc.The numbness in my legs and toes has also disappeared. I must be careful how I move and what I lift but that is a small price to pay.

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3 replies
lioness | @lioness | Dec 9, 2018
In reply to @pdray "I suffered from SI pain for over 30 years. Early in my diagnosis I went to..." + (show)
@pdray

I suffered from SI pain for over 30 years. Early in my diagnosis I went to Cedars-Sinai Spine Center and after an MRI and consultation with 5 Doctors they told me my options were: surgery with 10% probability of success, injections, or take 3 Advil whenever there was pain (which was more than once per day) and wait until another option comes along due to advancing medical knowledge. I opted for Advil. I am now living near Mayo in Rochester and have pain-free for almost 1 year. My solution was a special plan prescribed by Mayo using a Mayo trained physical therapist to strengthen my core muscles (all sides, not just doing sit-ups), proper posture, hip placement, how to walk, how to sit, etc.The numbness in my legs and toes has also disappeared. I must be careful how I move and what I lift but that is a small price to pay.

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@pdray I like your post I have a fractured back in 05 still have pain in lower back but take my Advil and love ginger-Tumeric tea anti inflammatory tea. Exercise as you say I refused surgery when they suggested placing cement m ke substance in fracture area thanks for post

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William Cross | @1002 | Dec 18, 2018

These posts have mentioned some great information on SI joint issues. Please read our web site dedicated to SI joint dysfunction. In my SI joint clinic at Mayo Clonic, I often recommend multiple non-operative regimens prior to considering patients for surgical intervention. This includes extensive physical therapy dedicated to the SI joint and specifically, core strengthening. I often prescribe SI joint belts to help stabilize the SI joint with in the pelvis. This can provide significant pain relief for a number of patients. Utilizing nonsteroidal anti-inflammatory drugs for flareups and acetaminophen can also help. Lastly, physical fitness and weight loss can dramatically decrease the stresses across the SI joint and aid in pain relief. Patients that have tried these modalities for an extended period time they continue to have SI joint mediated pain maybe candidates for surgical intervention for fusion across the SI in the form of minimally invasive SI joint fusion surgery. We have had tremendous success with this surgery at Mayo Clinic utilizing a principle-based fusion system. I occasionally post information on this fusion surgery via Twitter feed @williamcross3MD. I hope this helps with some suggestions for those that have this issue!

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Mentor
Teresa, Volunteer Mentor | @hopeful33250 | Dec 19, 2018

@1002
Thanks for your post, Dr. Cross. For those who might be interested in finding out more about Mayo's SI joint clinic at Mayo Clinic, here is the link that will take you to some information, https://www.mayoclinic.org/departments-centers/orthopedic-surgery/sacroiliac-joint-clinic/overview

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