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mdmo
@mdmo

Posts: 12
Joined: Jul 14, 2018

Sacroiliac joint pain and my introduction

Posted by @mdmo, Sat, Jul 14 1:09pm

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.

REPLY

Hello @mdmo,

You may noticed that I moved this discussion to the Bones, Joints & Muscles group as that is more where the members who have discussed sacroiliac joint pain in the past. I see that you have posted int he arachnoiditis discussion as well which is great. I'd like to invite @predictable, @sue427, @grammyx4, to this discussion to share their experiences with SI joint pain and treatment. You may also find the following discussion on addison's disease worth checking out as well, https://connect.mayoclinic.org/discussion/tired-of-being-tired/.

@mdmo, if you don't mind sharing, how are you doing with pain as you are weaning off of the pain pump?

I’m not managing it at all.
I’ve tried everything, I had a small back surgery at L-4 didn’t work, it’s been almost a year. I can only stand a couple minutes. I’m headed back to Mayo
Mn. In August.

@JustinMcClanahan

Hello @mdmo,

You may noticed that I moved this discussion to the Bones, Joints & Muscles group as that is more where the members who have discussed sacroiliac joint pain in the past. I see that you have posted int he arachnoiditis discussion as well which is great. I'd like to invite @predictable, @sue427, @grammyx4, to this discussion to share their experiences with SI joint pain and treatment. You may also find the following discussion on addison's disease worth checking out as well, https://connect.mayoclinic.org/discussion/tired-of-being-tired/.

@mdmo, if you don't mind sharing, how are you doing with pain as you are weaning off of the pain pump?

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Hi Justin thanks for moving around the posts where they will get the most views and advice. 🙂 Well, my intrathecal catheter is located at the L-3 level. My pain level has increased since the first dose reduction which was last Tuesday. My low back pain, plus the SI joints which the pump doesnt help at all.
I've had a rough first week.
They're giving me Ultram 50 mg 3 times a day for the pain.
Before reduction I wasn't on any oral pain medications per my pain managements contract. My pump was due for replacement in 11 months.
My pain management doctor here in Missouri requires you to wean down for a full replacement as well as a partial. Most doctors do not require the weaning process just for the pump to be replaced only when they need to replace the catheter as well.
Do you have a pump?
The doctor I have now believes in microdosing. My doctor in Texas thought my 4 mg per day was a low dose. Microdosing may work for a new pump patient. With any opioids it takes more over a peroid of time to achieve the same pain relief.

Hi, @mdmo. Justin asked me to give you some information about my experience with sacroiliac (SI) joint pain. I wish I could be more helpful to you in dealing with the conditions and treatments that you have endured. I think, though, that members of Mayo Connect together will provide you plenty of opportunity to talk through the issues you face.

My SI joint turned out to be the site of severe lower back pain that radiated into my Piriformis and Gluteus muscles and down into my upper thigh for several weeks. A spinal pain specialist treated me for several weeks, and a physical therapist tried to help, but in the end, my personal care physician asked if I'd like to try a direct injection of an anti-inflammatory medication into my SI joint. I agreed, and within a few days, my back pain was gone.

In the course of that, we looked at literature on the SI joint. The sum and substance was that the joint pain probably was caused by inflammation of the joint lining, perhaps on both the Sacrum of the spinal column and the pair of Iliacs of the pelvis. The injection in one of the two joints resolved the inflammation, and it hasn't returned in the last four years. In our literature, there was no suggestion of ablation (i.e., removal) of lining of the joints, which seems logical to avoid in dealing with movable joints. Has your new medical team discussed injection in the SI joint(s) as a remedy for your pain? Martin

@predictable

Hi, @mdmo. Justin asked me to give you some information about my experience with sacroiliac (SI) joint pain. I wish I could be more helpful to you in dealing with the conditions and treatments that you have endured. I think, though, that members of Mayo Connect together will provide you plenty of opportunity to talk through the issues you face.

My SI joint turned out to be the site of severe lower back pain that radiated into my Piriformis and Gluteus muscles and down into my upper thigh for several weeks. A spinal pain specialist treated me for several weeks, and a physical therapist tried to help, but in the end, my personal care physician asked if I'd like to try a direct injection of an anti-inflammatory medication into my SI joint. I agreed, and within a few days, my back pain was gone.

In the course of that, we looked at literature on the SI joint. The sum and substance was that the joint pain probably was caused by inflammation of the joint lining, perhaps on both the Sacrum of the spinal column and the pair of Iliacs of the pelvis. The injection in one of the two joints resolved the inflammation, and it hasn't returned in the last four years. In our literature, there was no suggestion of ablation (i.e., removal) of lining of the joints, which seems logical to avoid in dealing with movable joints. Has your new medical team discussed injection in the SI joint(s) as a remedy for your pain? Martin

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Yes, I recieved multiple SI joint injections. I told them why do more, the last 4 haven't helped at all? I'm so thrilled for you that you had success with your injections. My Texas doctor also did the Radiofrequency ablation procedure after I told him that the injections didnt work. I have Medicare and they are about the only insurance company that will do RFA, and only if the injection works first……I've often wondered how and why Medicare paid him for the RFA due to the absolute fact I told him I was in miserable pain 2-3 weeks post injection. He told me oh,,,,well when we burn the nerve you won't feel it hurting anymore. When you are desperate you tend to go along with what your told. Just to get some relief.

I'd like to inquire for a friend about anyone with experience with either (sacro illiac) SI joint fusion or if any type of physical therapy helped them with an SI Joint problem. My friend has had 2 lumbar fusion surgeries and cannot walk without pain. I know that misalignment of the pelvis causes leg and back pain, as I have had that happen myself with it being caused by certain muscles that get too tight and pull it out of alignment. I have not had back spine surgery, but I did have cervical spine surgery and I've learned a lot from my physical therapist. My friend's doctor is considering fusing her SI joints, so I'm looking for some education on the pros and cons.

Here is her post to me that explains the issues. " I am concerned the fusion would be different to work with. Pulling the sacrum which is fused. Do you think it is possible to avoid fusion with certain kind of Pt. I am fused L2-S1. The si joints may be compromised from that. Walking is difficult and after 100 steps I need my wheelchair or some one to hold on to. What is your take. Pain free lying down. Sitting ok for awhile."

My physical therapist who does a lot of myofascial release stretching had this comment. " I would try conservative approach always before surgery. After Surgery, there is no turning back. There are many pain sensitive structures and there are a lot factors that can play into the functional deficit she is having. She may do well with John Barnes MFR,(and have seen it help many cases). But she may also need stabilization exercises, motor planning education and possibly pelvic floor work. Her scars from her previous surgery may be playing into the pain pattern. It is a positive thing she can lay without pain and sit for a time." Thanks for any responses, and I'll relay them to my friend.

@jenniferhunter

How great of you to be looking out for your friend! Sometimes we all need advocates to assist us.

There are many good physical therapies for the sacroiliac. A good PT can also provide your friend with good exercises to practice at home. I agree that a conservative approach is good thing and anything that you can do for yourself is advantageous to surgery. There is something about exercises (PT or otherwise) that give me the feeling of empowerment because I know I am bringing about some important changes in myself.

Will you keep me posted on how your friend is progressing?

So sorry your having all the pain. I had a new disk and fusion 3 weeks ago. The sciatica is still very painful, I’m hoping it will straighten out. Good luck to you.

@hopeful33250

@jenniferhunter

How great of you to be looking out for your friend! Sometimes we all need advocates to assist us.

There are many good physical therapies for the sacroiliac. A good PT can also provide your friend with good exercises to practice at home. I agree that a conservative approach is good thing and anything that you can do for yourself is advantageous to surgery. There is something about exercises (PT or otherwise) that give me the feeling of empowerment because I know I am bringing about some important changes in myself.

Will you keep me posted on how your friend is progressing?

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@hopeful33250 Thank you. She's gone though injections and ablations since her 2 surgeries trying to get past the pain and to be able to walk without pain and fatigue. She was helpful to me early on during my spine problems, and I want to help her any way that I can. Because I do a lot of myofascial release therapy myself and I understand how it works, my gut feeling tells me this would help her. I also sent her a Mayo story about regenerative medicine used to help heal pain from adjacent segment disc disease with Dr. Qu. I knew that research had been successful in regenerating spine discs in rabbits and that was on the horizon for human treatment. https://sharing.mayoclinic.org/2018/11/02/an-active-life-restored-thanks-to-regenerative-medicine/

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

Please help.im supposed to get a epideral nerve block thurs from pain dr It's not even fda aproved im.so scared single mom rusphred disk back ,neck,bone diteratiang don't kn how to spell it

@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.

@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.

@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

@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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