1. < Spine Health

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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Mentor
Teresa, Volunteer Mentor | @hopeful33250 | Dec 19, 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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That is remarkable, @pdray , the program that Mayo developed for you was certainly effective. After 30 years of pain it is great that you are doing so well now.
Do you exercise every day now?

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user_chf56161a | @user_chf56161a | Dec 20, 2018

I had back surgery a month ago. I’ve never had this kind of joint pain till after surgery. I see the surgeon Jan 9th. Pain Dr has me on Norco and Lyrica wish makes me dizzy. The epidural shots are awful on me. Pain Dr is a pain salesman, I want off all these pills and out of pain. I hope the same for you.

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2 replies
Mentor
Teresa, Volunteer Mentor | @hopeful33250 | Dec 20, 2018
In reply to @user_chf56161a "I had back surgery a month ago. I’ve never had this kind of joint pain till..." + (show)
@user_chf56161a

I had back surgery a month ago. I’ve never had this kind of joint pain till after surgery. I see the surgeon Jan 9th. Pain Dr has me on Norco and Lyrica wish makes me dizzy. The epidural shots are awful on me. Pain Dr is a pain salesman, I want off all these pills and out of pain. I hope the same for you.

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Hello @user_chf56161a
Since your surgery was only a month ago, you have probably not started with physical therapy, yet. As you can see from the post by @pdray on December 9, his experience with PT and exercises to strengthen the core helped his pain response immensely. I hope that the same is true for you.

Do you know when you will begin PT?

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lioness | @lioness | Dec 20, 2018
In reply to @user_chf56161a "I had back surgery a month ago. I’ve never had this kind of joint pain till..." + (show)
@user_chf56161a

I had back surgery a month ago. I’ve never had this kind of joint pain till after surgery. I see the surgeon Jan 9th. Pain Dr has me on Norco and Lyrica wish makes me dizzy. The epidural shots are awful on me. Pain Dr is a pain salesman, I want off all these pills and out of pain. I hope the same for you.

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@user_cha56161a Hopefully the Dr will send you to P.T. Exercises is what you,ll need now instead of relying on meds This will help the pain alot along with pain meds I have a fractured back,bulging disc and nerve pain outside of the nerves ,exercise does help alot good luck.

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Mentor
Teresa, Volunteer Mentor | @hopeful33250 | Dec 20, 2018

Hi @lioness

Your support of exercise and PT is so great! You are right when you say meds are not enough. They must be combined with the right kind of exercise.

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dysnotfun | @dysnotfun | Jan 17, 2019

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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Moderator
Justin McClanahan, Moderator | @JustinMcClanahan | Jan 17, 2019

@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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1 reply
dysnotfun | @dysnotfun | Jan 17, 2019
In reply to @JustinMcClanahan "@dysnotfun, welcome to Connect. You may noticed I moved your discussion and combined it with another..." + (show)
@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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1 reply
Mentor
Teresa, Volunteer Mentor | @hopeful33250 | Jan 17, 2019
In reply to @dysnotfun "They worked on specific procedures for the SI joint area. Both stretching and strenghth aspects. At..." + (show)
@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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2 replies
dysnotfun | @dysnotfun | Jan 17, 2019
In reply to @hopeful33250 "I am sorry to hear of this difficult type of pain, @dysnotfun. I can understand how..." + (show)
@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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