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.

Interested in more discussions like this? Go to the Spine Health group.

@erikas

@susanjd Welcome to Mayo Clinic Connect. May I ask what guidance your provider has given you regarding SC stimulators?

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None regarding SC stimulator

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@susanjd

None regarding SC stimulator

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I have been looking for a different provider.

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@susanjd

It seems as if all of us who suffer from SI joint dysfunction have been through the same (failed) “solutions.” injections, ablations, therapies. PT, and finally! Opioids. The latter is the ONLY relief I have had—-and now there is a war on opioids and doctors are scared to death to prescribe! I am so sick of it and am looking into spinal cord stimulators, of which, of course, there are many. Pain is just debilitating! Does anyone have any positive words for experience with SC stimulators?

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@susanjd You are looking to find people that have experience with spinal cord stimulators. Members like @bobby55 @wisco50 @bill54321 @susieparker @scruffy1 @drmario45 are discussing a similar topic and may be able to help answer your question.

I have linked a discussion related to SC Stimulators below
– Has anyone one tried the HF10 Spinal Cord Stimulation Device? https://connect.mayoclinic.org/discussion/hf-10-spinal-cord-stimulation-device-relieves-back-and-leg-pain/

You may want to look at posts in the Chronic pain groups linked below.
Chronic Pain group https://connect.mayoclinic.org/group/pain/

I have also linked other discussions you may find of interest below in both Chronic Pain and Neuropathy.

Chronic Pain
– Chronic abdominal pain after cystectomy and or inguinal hernia repair https://connect.mayoclinic.org/discussion/chronic-abdominal-pain-after-cystectomy-and-or-inguinal-hernia-repair/

Neuropathy
– ABBOT BURSTDR Spinal cord stimulator https://connect.mayoclinic.org/discussion/spinal-cord-stimulator-1/
– Peripheral nerve stimulators https://connect.mayoclinic.org/discussion/peripheral-nerve-stimulators/

May I ask if you have explored any other groups on Connect so far?

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@susanjd I had SI joint pain on & off for 25 years, went to a slew of MDs. All told me they couldn't help but not to let anyone cut me. The last MD I saw was a ortho surgeon who also told me he couldn't help me but sent me to a chiropractor he collaborates with. After much discussion with him about chiropractors I made an appointment. The chiro took away my pain in 2 sessions! That was at least 7 years ago and, mostly, she keeps me pain-free. Sometimes it's many months between visits and sometimes a week or so. My sacrum gets twisted putting pressure on the SI joints (either side). She puts it back into place and I'm almost instantly without pain. Sometimes it also takes until the next day. My SCS doesn't touch the pain but she fixes me. i call her my angel. Lately my adjustments haven't been lasting as long so I've made the decision to get LinQ fusion. It's about 30-minute procedure. I'll probably do it this summer when it's just too hot here to play golf.

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@hopeful33250

@1002
Thanks for your post, Dr. Cross. For those who might be interested in finding out more about Mayo's SI joint clinic at Mayo Clinic, here is the link that will take you to some information, https://www.mayoclinic.org/departments-centers/orthopedic-surgery/sacroiliac-joint-clinic/overview

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If I have si joint fusion at Mayo will the PT at Mayo help guide my PT here at home with Amy recovery issues? (3 years of SI instability) seeing Dr cross in a couple of months

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@hopeful33250

@1002
Thanks for your post, Dr. Cross. For those who might be interested in finding out more about Mayo's SI joint clinic at Mayo Clinic, here is the link that will take you to some information, https://www.mayoclinic.org/departments-centers/orthopedic-surgery/sacroiliac-joint-clinic/overview

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Dr. Cross did bilateral SI joint surgery 3 weeks ago. I’m doing great!

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@bl780349

Dr. Cross did bilateral SI joint surgery 3 weeks ago. I’m doing great!

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Hello @bl780349 and welcome to Mayo Clinic Connect. I'm so pleased to hear that your surgery went so well. You must be pleased.

Will you have follow-up physical therapy in the future? If you are comfortable sharing more, could you share a bit of your history with the SI joint problem?

Once again, I appreciate your contribution to this discussion on Mayo Connect. Every member's input is encouraging and helpful to all.

Will you keep posting?

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@margebarge

If I have si joint fusion at Mayo will the PT at Mayo help guide my PT here at home with Amy recovery issues? (3 years of SI instability) seeing Dr cross in a couple of months

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Hello @margebarge

As it has been a while since you last posted, I was wondering how you are doing. Did you have an appointment at Mayo as you were anticipating?

I look forward to hearing from you.

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@hopeful33250

Hello @bl780349 and welcome to Mayo Clinic Connect. I'm so pleased to hear that your surgery went so well. You must be pleased.

Will you have follow-up physical therapy in the future? If you are comfortable sharing more, could you share a bit of your history with the SI joint problem?

Once again, I appreciate your contribution to this discussion on Mayo Connect. Every member's input is encouraging and helpful to all.

Will you keep posting?

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I had Spinal Fusion in 2013 and 2015 at Mayo in Jacksonville, Fl. I did well for many years. The fused sections became so painful on my hips. I’d read about Dr. Bydon doing some stem cell research so I decided to see if I was a candidate. I was not. Dr. Bydon did test and decided to remove my hardware. After surgery he told me all of the hardware used was too large for my size. I’m 5’3 and 135lbs.
I also had a fusion on my neck the next day after hardware removal. This was all done a couple of years ago. Dr. Bydon sent me to Dr. William Cross. I’d read his reviews and after many test I was definitely a candidate for surgery. January 21, 2022 surgery was performed bilateral.
Tomorrow marks three weeks.
Oh, prior to having this done Dr. Michael Tauton performed left hip replacement.
I live in Alabama and we drove for this surgery!
Mayo Clinic is special to our family. There's more to my history of surgeries!

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@bl780349

I had Spinal Fusion in 2013 and 2015 at Mayo in Jacksonville, Fl. I did well for many years. The fused sections became so painful on my hips. I’d read about Dr. Bydon doing some stem cell research so I decided to see if I was a candidate. I was not. Dr. Bydon did test and decided to remove my hardware. After surgery he told me all of the hardware used was too large for my size. I’m 5’3 and 135lbs.
I also had a fusion on my neck the next day after hardware removal. This was all done a couple of years ago. Dr. Bydon sent me to Dr. William Cross. I’d read his reviews and after many test I was definitely a candidate for surgery. January 21, 2022 surgery was performed bilateral.
Tomorrow marks three weeks.
Oh, prior to having this done Dr. Michael Tauton performed left hip replacement.
I live in Alabama and we drove for this surgery!
Mayo Clinic is special to our family. There's more to my history of surgeries!

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@bl780349

It sounds like Mayo is very special to your family! I'm glad that you have experienced so much help. That is a long way to travel, but it sounds as if it were a worthwhile trip.

May I invite you to other conversations with people who are considering traveling to Mayo?

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@hopeful33250

@bl780349

It sounds like Mayo is very special to your family! I'm glad that you have experienced so much help. That is a long way to travel, but it sounds as if it were a worthwhile trip.

May I invite you to other conversations with people who are considering traveling to Mayo?

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Yes, of course!

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@bl780349

Yes, of course!

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Great, I'll do that!

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