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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@hopeful33250

I really appreciate all the information you are giving her. Does she seem receptive to these alternatives? @jenniferhunter

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@hopeful33250 Yes, my friend made an appointment with a good physical therapist for next week. I also sent her a list of MFR specialists in her area.

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@jenniferhunter

@karolyn You are correct. Epidural injections of steroids into the spine are not FDA approved. It will not cure anything, and can help pain temporarily. I had one in my neck, but I will not do another. I had a bad reaction to it that they called a parasthesia. That was a big electric shock stabbing pain (in my hand) caused by the pressure of the injected fluid that had no place to go. It took about 4 weeks for the pains to stop, and I had cold sensitivity in my hand from this for at least a year. You are right to question things like this and it is your choice if you do them or not. These injections can also have serious consequences like paralysis if they are injected in the wrong place. A lot of patients get them, and insurance probably would rather pay for this over surgery. My injection was $1600 and took away pre existing pain from my spine problem for only 5 days before symptoms slowly started to return (but I had the pain that the injection had caused). Physical therapy might help and building core strength is the best way to prevent spine problems. I ride my horse which does wonders for my back strength.

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Thank u so much for your help I go to a pain management and if I refuse it she will no longer give me my meds and kick me out I don't know what to do I'm so scared I was set for a medial branch block but she changed it I don't kn why or how to not get this epideral done

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@karolyn

Thank u so much for your help I go to a pain management and if I refuse it she will no longer give me my meds and kick me out I don't know what to do I'm so scared I was set for a medial branch block but she changed it I don't kn why or how to not get this epideral done

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@karolyn go to your pcp or rheumatologist and tell her about your pain.My Dr gave me script for Tramadol Ive taken this since I fractured my back in 05 its the only thing that relieves me . I have alot of back and nerve issues.Also I do exercises

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@lioness

@karolyn go to your pcp or rheumatologist and tell her about your pain.My Dr gave me script for Tramadol Ive taken this since I fractured my back in 05 its the only thing that relieves me . I have alot of back and nerve issues.Also I do exercises

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I'm on.pain meds ,but she keeps changing my never blocks before I get them I don't kn what's going on she forgets what she already told me

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@karolyn

I'm on.pain meds ,but she keeps changing my never blocks before I get them I don't kn what's going on she forgets what she already told me

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@karolyn if I may ask where is the nerve pain at? Mine is in my thighs

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@lioness

@karolyn if I may ask where is the nerve pain at? Mine is in my thighs

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My neck ,back,siacata,shoulder blades rusphred disk, I don't mind nerve blocks just not cesi,not fda aproved

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@karolyn

My neck ,back,siacata,shoulder blades rusphred disk, I don't mind nerve blocks just not cesi,not fda aproved

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@karolyn Are you satisfied with this Dr? If not I would seek a second opinion.Is she an Orthopedic Dr? With what you say ,she sounds like she is unsure of what to do ?

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@jrbuff

Considering si joint fusion.

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@jrbuff Welcome to this wonderful group of people .Can you explain more of why your considering a S1fusion? So others will know how to respond thank you

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Ok. Over the past three years I have had two spinal fusions. L2-3 and L3-S1

I somewhat recovered but continued to have trouble walking well.

Since then the docs think it is my si joints I have had 2 injections, radio frequency ablation and physical therapy on and off. No help

The next step is looking like SI joint fusion scheduled for December 26
Looking for ideas and input. Thanking you in advance
Joan

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@karolyn

Thank u so much for your help I go to a pain management and if I refuse it she will no longer give me my meds and kick me out I don't know what to do I'm so scared I was set for a medial branch block but she changed it I don't kn why or how to not get this epideral done

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@karolyn Is there another doctor you can see? Your doctor shouldn't force you to do anything. Find a doctor who puts you first, not their paycheck. They make a lot of money with injections. Are you a surgical candidate or have you tried physical therapy? You can look for providers on your insurance company's website. Sometimes they want to do injections so they don't have to take a risk on surgery and they put their reputation ahead of your well being. You can fire your doctor if you want to leave, I assume, unless your insurance forces you to see them. You can always call the insurance company to find a new provider. I always check out a provider as best I can before I see them. Think about what you want your future to be, and what you need to do now to get there. Put yourself first.

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