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.

@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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Considering si joint fusion.

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Would like input.

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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

Liked by Lisa Lucier

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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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@jrbuff

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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@jrbuff You said you,ve had your L3-S1fused already ?Im confused why does the Dr want to fuse it again?All your nerves that go to the body come from your back just like my fracture it has affected my legs I just have to learn to cope the best I can . If you have 2nd thoughts you dont have to go through this till your sure about it.Its important for you to have faith in your Dr.

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@jenniferhunter

@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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Thank u so much for responding this is the only pain management Dr here that takes my insurance, since these new laws,there push us to do injection when I want physical therapy, she's changed my injection epiderial times before I can even get the first one I really don't think she remembered the first injection was a branch block I'm ok w that it's fda aproved, went in before the injection to ask more info and she changed it to a epideral I don't get it, if I refuse they kick u out the door then I'm in withdraw from 12 year pain meds and no Dr or relief.i called tenn care and told them it's not fda aproved and gave me the run around pretty much said they pay for it even if it's off lable,not fda aproved

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@karolyn

Thank u so much for responding this is the only pain management Dr here that takes my insurance, since these new laws,there push us to do injection when I want physical therapy, she's changed my injection epiderial times before I can even get the first one I really don't think she remembered the first injection was a branch block I'm ok w that it's fda aproved, went in before the injection to ask more info and she changed it to a epideral I don't get it, if I refuse they kick u out the door then I'm in withdraw from 12 year pain meds and no Dr or relief.i called tenn care and told them it's not fda aproved and gave me the run around pretty much said they pay for it even if it's off lable,not fda aproved

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Thanks for all of the information. Lower back pain just started for me. If you have had success with at home exercises, please provide exercise descriptions. Appreciate the help!

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@sleepy0

Thanks for all of the information. Lower back pain just started for me. If you have had success with at home exercises, please provide exercise descriptions. Appreciate the help!

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Hi @sleepy0
While I know this post was directed to @karolyn, I just wanted to suggest that you contact your doctor or a physical therapist for home exercise descriptions.
Do you have benefits available for physical therapy?

Liked by karolyn

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@hopeful33250

Hi @sleepy0
While I know this post was directed to @karolyn, I just wanted to suggest that you contact your doctor or a physical therapist for home exercise descriptions.
Do you have benefits available for physical therapy?

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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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@karolyn

Thank u so much for responding this is the only pain management Dr here that takes my insurance, since these new laws,there push us to do injection when I want physical therapy, she's changed my injection epiderial times before I can even get the first one I really don't think she remembered the first injection was a branch block I'm ok w that it's fda aproved, went in before the injection to ask more info and she changed it to a epideral I don't get it, if I refuse they kick u out the door then I'm in withdraw from 12 year pain meds and no Dr or relief.i called tenn care and told them it's not fda aproved and gave me the run around pretty much said they pay for it even if it's off lable,not fda aproved

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@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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