Connect
Sacroiliac joint pain and my introduction
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.
Like
Helpful
HugInterested in more discussions like this? Go to the Spine Health Support Group.
Connect
I don't have a date yet. I just finished more tests on Friday. Now waiting for them to send to insurance. Meanwhile just trying to keep moving till I can get these horrible and extremely painful rods out of my body.
-
Like -
Helpful -
Hug
1 ReactionHey Queenie,
Sorry about the typos and not getting back to you. It’s hard to text in a moving car (I also have essential tremors that make my already very poor handwriting totally illegible). Thank God for electronic medical records! My MA used to get calls all the time from pharmacies who couldn’t read my writing!
He has a Tesla with the “FSD” - full self driving. It’s not quite FSD - you have to hold the wheel and be able to respond immediately. I prefer the ‘old-fashioned’ type of driving, where I control the car!! My car does have components of this, with adaptive cruise, self parking (which I have never done!) and a bunch of other stuff that is now new. All on my older MB from 2012!!
Bless your heart - it’s bad enough when one of us can’t help the other, but for both to be down for the count at the same time - I have put you both on my prayer list. We are the same age. DH is 71, and I’m 69.
I enjoyed reading that your DH’s doc said he has a higher risk of paralysis from the initial injections! I remembered mine said that as well. I did remember the convo that the nerves grow back. Did your hubby stay pain-free until they grew back? At 71, MC won’t pay for his ablation? They already ‘pre-certed’ mine and because we have MC and a supplement, I don’t have to pay anything.
Hope you are feeling better. My BFF had her shoulder replaced ~9 mo ago. Her doc told her no laying in bed, go get a recliner. She went and bought one from Lazy Boy. They have a 10K sq foot house, so their MBR is massive. She said she loved the recliner because it was so much closer to the tv, that she could actually see it! I could not do that room - the room is so huge, I can barely see the tv, much less see what’s on it from their bed. There is a couch closer to the tv, but I can’t sit like that. I do what your hubby does. Lay on my back with a pillow under my knees, that I move all night when I turn side to side. I may get mad and rip off my CPAP nasal thingy, but that knee pillow moves with me!!
-
Like -
Helpful -
Hug
1 ReactionThis was a while ago, but see you are still active. I have been suffering from si joint pain for almost as long as you. Seen a bunch of doctors but don't want to risk surgery. I was wondering if you would share the exercises that are helping you? Much appreciated.
Hello,
We appreciate your prayers. I will pray for you as well. My hubby is 71 but I am 77. I robbed the cradle. Our Pacifica has all those safety features but we don’t let it park itself. Most features are good for older drivers.
My husband just had his lumbar ablations a couple of months ago so there is no nerve grown back as yet. Probably will take a year or more to grow back. Insurance did pay for the two ablations just not a sacroiliac ablation because it is still considered experimental. His pain Dr ordered an MRI if the pelvis and insurance denied it. Said if he had had an X-ray first they would have covered it. Didn’t tell us until he had paid for the MRI.
He is now having lots of back spasms when he moves. Muscle spasm pills help some but not enough. I am praying he can get the ilea’s ablation but Dr says it only helps 50% of people.
I am feeling better 2 weeks post op of my shoulder replacement. Formal PT starts Monday. Dr ordered home PT and a home nurse who has been great. I requested the same PT lady I had for my hip 9 months ago and she is terrific.
We too have a supplemental insurance and rarely pay anything.
I am sorry. I read about such horrible medical care here in this forum. I am shocked. I have my own stories. I have been publishing them here so all sides step my stories, but to say I appear to be in the same boat, but I’ve had a lot of good care along the way, and not such negligence except for a few. I’ve just went through most of the year dealing with the same kind of pain you’re having in my case the surgeon my surgeon worked with me and I’m at a point where it’s the muscular, myofascial, connective, tissue issues, which is the source of my pain. My spine surgeon stabilized my bones, but it’s what’s on top of the bones. I have osteoarthritis and very tight sacral joints. for years we’ve always looked at surgery as a possibility for the sacral joints. because I know of the dangers of steroids, I take only a half dose and space them out so I don’t have more than a couple every few years. But as you know, they are very damaging. There are many other things to help. Botox injections are great to paralyze particular muscles, those little balls that you nestle into spasmodic muscular areas and roll around on, and myofascial work. I am 67 and was very athletic and in old age my long hours at a drafting table and my degenerative disc disease and my curvature of the spine now keep me in constant pain muscles are too weak to support everything. So I have to maintain exercise regimen and I go for deep myofascial tissue release therapy. MFR. There is a group here that has discussed it. It’s not covered by insurance, but it is an absolute necessity going forward for the rest of my life, and it gives me immense relief . You have to kiss some frogs to find the right therapist - it costs money out of your pocket but well worth it. I go twice a month and in conjunction with everything else it keeps me out of surgery. Good luck.
Update on my husbands sacroiliac ablation. He had it about 5 weeks ago and the pain is almost all gone. He also had two ablations on his spine so he feels better than he has in years. Insurance would not pay for the sacroiliac ablation saying it is still considered experimental. It was well worth the cost. This Dr says 80% of his are successful. He said it is more difficult to hit the right spot than spinal ablation.
given your extensive experience with different pain management strategies, what non-pharmacological approaches or lifestyle changes have you found most effective in managing your SI joint pain and overall well-being? Are there any particular therapies, exercises, or techniques you would recommend or avoid based on your experience?
Myself, my SI pain is only on one side when sitting. There's lumbar pain too, but not because of sitting. To accommodate my sitting, I had to make for myself a soft brace for my left side bottom. It was a rolled up, and then a do-it-myself duct taped thick kneeling pad that construction workers use for hard gravelly surfaces. It was maybe 18" by 2 ft. I happened to have one when the need arose. I put it under my right side on chairs or whatever, so that the left bohunkus didn't have to touch the chair. it takes some getting used to. It also wrecks your posture, but I couldn't sit unless I used it (for years). A PT had suggested a rolled up thick towel, which wasn't quite enough. So, then, I had to get used to carrying a bag (shopping bags work) if going to doctors etc. For some reason, I could sit in the usual public buses, in the middle of two hard seats, but not the sort soft seats the shorter ones usually used for ADA transport or for seniors.
Much later on, when I had a few bucks extra I discovered special sitting (and sleeping) pads that were composed of pillows of large air pockets. I believe they are called Roho cushions and are often called wheel chair cushions. Perhaps a less expensive foam wheel chair cushion would also work for you? Also, I got a recliner that allowed me to sit with my body weight further back, off my SI joints. For years I had to sleep only on my right side, or on my front, or in that recliner. It takes time to find all the workable solutions for yourself. Good luck.
What surgery did you have that finally worked?
I've had many injection in my SI joint and they never worked. I kept hoping that "the next one " will work. Now I'm looking into surgery. What kind of SI surgery has worked for others?