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.

For over a year now I have had a hot stabbing feeling just left of my spine in my upper left buutck area. It has interrupted my complete life style. I have seen many Dr's with all pointing to my left SI joint. Physical therapy intensified the pain. Four injections with no positive results. (I might mention…I do not react to Lidocaine or any derivative thereof. ) Doctors refuse to treat me with failure of the injections. I desperately need help and advise. I struggle with just every day functions@

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@dysnotfun, welcome to Connect. You may noticed I moved your discussion and combined it with another discussion titled, "sacroiliac joint pain." I did this so you would have the chance to see some of the posts made by the many members talking about similar experiences as you and so that those members would see your post. If you are replying by email, I suggest clicking on VIEW & REPLY so that you will be brought to the new location of your discussion.

@dysnotfun, what sort of things did PT work with you on? Strengthening, stretching?

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@JustinMcClanahan

@dysnotfun, welcome to Connect. You may noticed I moved your discussion and combined it with another discussion titled, "sacroiliac joint pain." I did this so you would have the chance to see some of the posts made by the many members talking about similar experiences as you and so that those members would see your post. If you are replying by email, I suggest clicking on VIEW & REPLY so that you will be brought to the new location of your discussion.

@dysnotfun, what sort of things did PT work with you on? Strengthening, stretching?

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They worked on specific procedures for the SI joint area. Both stretching and strenghth aspects. At this point…if my left knee rises to a 45° angle, the joint pops audible enough to physically hear it.

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@dysnotfun

They worked on specific procedures for the SI joint area. Both stretching and strenghth aspects. At this point…if my left knee rises to a 45° angle, the joint pops audible enough to physically hear it.

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I am sorry to hear of this difficult type of pain, @dysnotfun. I can understand how limiting that would be for your lifestyle. What activities in particular are most uncomfortable for you? Are there any surgical treatment options available for you?

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@hopeful33250

I am sorry to hear of this difficult type of pain, @dysnotfun. I can understand how limiting that would be for your lifestyle. What activities in particular are most uncomfortable for you? Are there any surgical treatment options available for you?

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@hopeful33250 unfortunately I have not worked in over a year. It literally has affected everything I do…constant pain day and night. Seems that any movement irritates the nerves and causes great discomfort and pain. Hince Dysnot fun😢

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Are there any other treatments available, @dysnotfun? Also, wondering if this problem was the result of a fall or auto accident?

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@hopeful33250

I am sorry to hear of this difficult type of pain, @dysnotfun. I can understand how limiting that would be for your lifestyle. What activities in particular are most uncomfortable for you? Are there any surgical treatment options available for you?

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@hopeful33250 Doctors have also told me…because the injections show no results they will not do surgery. Whether to explore or to fuse.

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@hopeful33250

Are there any other treatments available, @dysnotfun? Also, wondering if this problem was the result of a fall or auto accident?

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I actually just got up from a squatting position and it felt as if I tore a muscle. I could not walk the next morning l. Any movement was excruciating. I was terrified.

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I am sure it was terrifying, @dysnotfun, a sudden onset condition is very difficult. I hope you find some good answers and treatment. Keep in touch with Connect!

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@dysnotfun

@hopeful33250 Doctors have also told me…because the injections show no results they will not do surgery. Whether to explore or to fuse.

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@dysnotfun

You might consider a second opinion. Many people have been surprised by what a second opinion will offer them. Do a little research and find who would be the best to treat this problem.

Liked by lioness

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@hopeful33250

@dysnotfun

You might consider a second opinion. Many people have been surprised by what a second opinion will offer them. Do a little research and find who would be the best to treat this problem.

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Hopeful33250 I have had 2nd, 3rd , 4th ect opinions. All the same (SI) dysfunction. Just cant find anyone to chance next steps. 😕

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@dysnotfun

Hopeful33250 I have had 2nd, 3rd , 4th ect opinions. All the same (SI) dysfunction. Just cant find anyone to chance next steps. 😕

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@dysnotfunThat is most unfortunate. Are you near a Mayo facility?

Liked by lioness

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@hopeful33250

@dysnotfunThat is most unfortunate. Are you near a Mayo facility?

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@hopeful33250…I am in Nashville Tn area. I think there is one close.

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@dysnotfun

@hopeful33250…I am in Nashville Tn area. I think there is one close.

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Hi, @dysnotfun. I hope my experience will help you visualize a path to relief. I had a similar problem a few years ago. My spinal-pain doctors reacted to an MRI which, they said, showed I had arthritis in my lumbar region. Physical therapy was first, and that evolved into a strong diagnosis of a strain in a piriformis muscle which runs through the pelvis into the muscles of the buttocks. Oddly, the PT didn't fix the problem. My personal care physician did. I told her I wasn't inclined to pain-relief injections, she asked what the high-priced specialists didn't: What about a sacroiliac joint inflammation? That diagnosis gets confirmed by injecting inflammation medication into the joint — not a pain-killer — and if it works, the diagnosis is confirmed. She was right! And I was able to quit thinking about whether to have surgery. My second-opinion doctor solved my problem. I think Teresa's advice to get a second opinion is at least worth a try, and if it comes from a specialist who doesn't practice with surgical knives, the chances of relief are better, in my opinion. Martin

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@predictable

Hi, @dysnotfun. I hope my experience will help you visualize a path to relief. I had a similar problem a few years ago. My spinal-pain doctors reacted to an MRI which, they said, showed I had arthritis in my lumbar region. Physical therapy was first, and that evolved into a strong diagnosis of a strain in a piriformis muscle which runs through the pelvis into the muscles of the buttocks. Oddly, the PT didn't fix the problem. My personal care physician did. I told her I wasn't inclined to pain-relief injections, she asked what the high-priced specialists didn't: What about a sacroiliac joint inflammation? That diagnosis gets confirmed by injecting inflammation medication into the joint — not a pain-killer — and if it works, the diagnosis is confirmed. She was right! And I was able to quit thinking about whether to have surgery. My second-opinion doctor solved my problem. I think Teresa's advice to get a second opinion is at least worth a try, and if it comes from a specialist who doesn't practice with surgical knives, the chances of relief are better, in my opinion. Martin

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I've had steroid and Lidocaine injects with no results. If you put a stethoscope over my left SI joint…it pops consistently with every movement of my left leg. Rising from a chair or sitting position…my wife hears it pop. Painful indeed.

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