Usually I am not one to share much of my personal story but here goes…I have what is called moderate to severe degenerative disc disease, arthritis of the spine C3-C7 and lumbar spine, and Fibromyalgia. In the 20 years Ive had pain, I"ve been though many treatments including PT, tens unit, bio feedback,injections, nerve ablations, you name it. I'm prescribed Cymbalta 60 mg for Fibro and anxiety as well as 225 mg of Lyrica. I have been on and off various painkillers too. I'm currently on a long acting oxycodone of 13.5 mg and once a day one 15 mg of IR oxycodone. This has been my regime for a few months now as I switched from 15 mg IR oxycodone. Now for those who are worried about me ODing…I understand. I actually hype-vigilant about my meds. (And I have my hubby and son who watch) Years ago I was on 15 mg Fentanyl patch for 10 months and came off it in one month with no side effects.
Right now I'm really struggling with this rotten pain. I have no appetite, either can't sleep or nap during the day.
Hi Jeff @jmweissler — I received your private message and thought I would answer it here so that others may also be able to share their experience if they have one. You were trying to located information on the recovery of open bilateral SIJ fusion surgery and were looking for other folk who have had the surgery. Hopefully other members will be able to share their experience. Here is what I found:
Sacroiliac Joint Fusion Recovery
— https://www.spine-health.com/treatment/spinal-fusion/sacroiliac-joint-fusion-recovery
Liked by Parus
Hi.No problem. That article relates to minimally invasive. I'm looking for bilateral OPEN joint fusion. Very difficult to find as it is out of the mainstream these days, but due to my entire lumbar being fused, my surgeon wants to do open & both sides at the same time. Says it will be best for me structurally not necessarily pain wise or post-op rehab though.
Liked by John, Volunteer Mentor
As a result of an accident my L5 was out of the stack by about a 1/3… In 1995, in Oklahoma City, a wonderful spine surgeon took about 8 hours to fuse L4,L5,S1.. using 2 plates and 6 screws…(they are still there)… the bone for the graf was from my hip.. I was in the Hospital 5 days.. back to work in Academia within a month and really have had very little problem since.. I am now 82 years old and can get around so much better than most of my peers… The surgeon cleaned up a bunch of arthritis and such while he was pulling that L5 back into the stack… Structural stabilization is the Key…
REPLY@jmweissler I think this is the one you are looking. I had focused on recovery in your question so I missed the open part.
Traditional "Open" Surgery for SI Joint Fusion
— https://si-bone.com/si-joint-pain-treatment/traditional-open-surgery
I'm tagging @jenniferhunter to see if she has any experience or information she can share with you.
Hi, Jen, I’m so sorry for the pain you are experiencing. You have been so encouraging to me and to others so I wanted to reach out to you. With regards to the opioids you’re taking I wouldn’t worry about becoming addicted, especially if you have taken them before and successfully stopped. They do help some people with chronic pain, myself included. I hope your pain becomes better, and I hope your husband has success with his spinal cord stimulator if he has surgery for it. Sending you prayers and good thoughts. 🙏
Liked by John, Volunteer Mentor, Jen, Volunteer Mentor, Chris Trout, Volunteer Mentor, Ginger, Volunteer Mentor
@patrick17 Thank you for your kind response. Your message means so much to me. It's good to know I am helping you and others on Connect. 😊
REPLY@lioness I know I replied to you but gosh darn if I know what happened to it. Because I had gastric bypass in 2007 for weight loss, Meloxican and other NSAIDS are not on my approved list. It is said they cause ulcers in the pouch that has been created to hold a small amount of food. Trader Joe's Ginger Turmeric tea is good and I have been drinking two cups daily. Did you have the MRI yet?
REPLYThe spine surgeon (Dr. Odor in OKC)was brilliant in my estimation…How he stabilized the spine with those 2 plates and 6 screws as he pulled the dislocated vertebrae back into place was the key… Then a few years after that surgery I had pain problems from my neck down one arm… so I returned to him to see what to do… He gave me an epidural … and after a few days asked if that epidural helped with the pain… IT HAD NOT Helped…. so he said… You have "Cubital Tunnel Syndrome..". that means your "crazy bone" nerve is causing the problem… but He did not do surgery on Arms… (The nerve in the elbow stretched, when I bent my arm … and the nerve was caught up on something that triggered the pain…) (My words…not his)….So I went to any "arm surgeon"… and told him what I had… Cubital Tunnel Syndrome …. the arm surgeon sent me through a couple tests… and then pronounced that I had "cubital Tunnel Syndrome…"… that surgery opened up the elbow of the arm and moved that "crazy" nerve so when I bent my elbow it no longer stretched that nerve… Problem solved…. Been great in that area since that surgery 20 years ago… Ah the Luck continues… Really smart and capable surgeons fixed the structural situations …
REPLY@sandytoes14 Hi Jen yes I had the MRI and have a fracture L4 so that's 2 I'm not trying for a 3rd. Going to see my pain Dr. on 9th in meantime Dr.. said they treat this symptomatically rest,ice,heat, Tens unit so that's what I'm doing . I do wear a brace when out and about. Have a wonderful Labor Day.
REPLYI really liked your comments about pain. I myself never experienced real bad pain, even though I had 4 children, 2 c-sectioned, in 8 years and some backpack, but the real pain came
now in the last 10 years. Now I know, what it does to you. I withdraw from social functions, have no pleasure in life, and try to get off opioids, because they do help, but I do not like the dependency, which comes with it. But the pain is there almost 24 hours, and I have become more housebound and now even in bed more hours. I have arthritis in my spine, headaches ,
had an AVM operated with open brain surgery, and other bone problems.
Tried to cut down on the Opioids, but it is hard, after several years. I am 73 yrs old, and thought my hubby and I had some good years left.
Now the depression has started. Any suggestions?
Liked by Chris Trout, Volunteer Mentor, lioness, rwinney
@edda…..you asked a simple yet very complex question. "Any suggestions?" Pain is so unique in intensity and duration for everyone. However, the pains of aging seem to finally get to all of us. I am 77 and my suggestions would be the following:
1. Explore the practice of gentle yoga and mindful meditation. Study your pain and learn from it. Learn what works and what doesn't. This daily practice is my salvation.
2. Find a type of treatment e.g. massage, acupuncture, walking exercise, infusions, that makes your body feel better and enhances your coping skills.
3. Find a type of medication that works where and when you need it to. And as an adult, you know about the opioid dependency. I have chosen a non-opioid option, medical cannabis. The journey has taken me years and now that the cannabis industry is more regulated in adult-use states, we can be sure that the product meets the industry regulations when we purchase it from a legal dispensary.
4. Give back…..find a way where giving back to a charitable cause is a real game-changer for you. Do you feel like you are becoming unworthy with nothing to share? That happens to many of us after retirement. We used to be sought after for our talents and contributions…..now look what happens. We are replaced and our accomplishments become a faded memory. In case you haven't guessed, Mayo Connect is my "give back" and it matters to me to be totally there for you and other members. I am comfortable at home and my pain is manageable at a mid-range level most of the time.
Would it be possible for you to send us some shining moments in your life that you can share? Be free of suffering today. Chris
Liked by John, Volunteer Mentor, Jen, Volunteer Mentor, lioness, patrick17 ... see all
Chris, eloquently said. I admire and appreciate your positivity. I may only be 49 but, I feel retired and aged and can relate.
Thank you for being a bright light to many.
~Rachel
Hello Edda
Nice to hear from you.
When I was 8, my Mom had a motorcycle accident which broke both of her legs multiple places. From that day forward I began observing my mother's massive life changes, challenges and chronic pain. 1978 meant less advancements in medicine… 4 months on her back in traction, one year bound to a wheel chair and on crutches, countless drugs, operations, infections, therapists, hospitals, doctors etc… As a matter of fact my mom was one of the first in NY state to be hooked up to the brand new technology of a tens unit for electric stim! The day of mom's accident, her Dr. wanted to amputate but Dad refused to let him because she was only 28 years old with a little girl to raise (yours truly). Fast forward 41 years later… who knows if that was the right decision. The Dr saved her legs but with repercussions. She has been through hell along the way and I have been along her side.
Before I began this post I was texting with my mom who is now 69 and really wearing down from all she's been through. She has always been THE MOST powerful, strong, stubborn and determined person I know. Her words to me just were… "Alot of times one feels the fight is gone. I am trying to stay positive."
Now, here I am with chronic pain of my own, on opiods after watching her need them for decades, trying to stay positive for her as well as myself and feeling bad for many folks on this forum. The one thing I have learned throughout it all is that none of us are truly alone in our misery and no matter the challenge… support, love and a sympathetic yet encouraging ear can be the best medicine ever!
Thank you for reading my story. I hope it occupied your mind and took away from your pain, even for a bit. Wishing you peace and comfort. Don't be a stranger. We can all help each other.
~Rachel
@jmweissler
Thanks. Open bilateral SIJ fusion scheduled for 10/4. Need to heat from Mohs & repair surgeries.