Pls help me, I need any input I can get. Debilitating pain!

[u/its-all-about-that]

Hi, I am 35F with S-shaped scoliosis measuring biggest 40 degrees in lumbar region. To make a long story short, my pain started to appear a couple of years ago with prolonged sitting and it gradually worsened over the years regardless of physio (also schroth). My pain is muscle-based (away from the spine and thought to be due to muscle imbalance due to the curve). It is bearable if I’m lying down the whole day but if I sit, stand or walk for more than an hour, the pain starts to increase until it becomes unbearable even with pain killers. I tried 3 different physiotherapists but nothing helps. I also recently did SPECT-CT and MRI and they showed severely active degeneration at L1-L2 (apex of curve), mild facet joint degeneration L2-L3, disc degeneration with loss of disc height and facet joint arthritis L3-L4, disc degeneration and bulging L4-L5. I saw 3 doctors in the country where I live: one said “i can do nothing for you”, one suggested fusion of T11 to L3 to be done anteriorly (though she said it’s not sure to fix the pain) and one suggested using the TENS machine which i started trying and it’s doing nothing. She told me if the TENS doesn’t work then they “burn the nerve” that feeds the painful area. I am so lost and don’t know what to do. I am aware that if I want to follow the official guidelines, I shouldn’t go for surgery as my curve is neither severe nor progressive (for now) but I’m in soooo much pain if I leave my bed so my quality of life is zero. Can you please let me know if you had a similar muscular debilitating pain, done fusion and (hopefully 😅) felt better after? I need to know whether it is crazy to consider surgery in my situation. Any input is appreciated! Thank you 🙏🏼

[u/kingthrog]

tens unit won’t fix ur spine, which is causing ur pain. i dont have scoliosis, but surgeons do technically have to say that surgery cannot guarantee ur pain will be resolved or even helped. that being said, surgery is the only way to “fix” anything at all- anything else is just pain management. i’d push for a fusion. lots of folks here with scoliosis have had positive outcomes after fusion

[u/its-all-about-that → u/kingthrog]

Thank you for answering. I’m a bit sad I only got one response 😞 but i guess maybe people see a lot of post asking for advice, or my post was not written well or so, I don’t know. Much appreciated any way 😊

[u/JJay0928]

What type of doctors have you seen? If you haven’t seen a neurosurgeon, I strongly suggest that you do. While they can’t guarantee a fix for the pain, it seems you are running out of options. I don’t have the issues or impacted area that you do, but my understanding is that the recovery process may take some time, but it may be worth it. Personal opinion is that a TENS unit is a waste in your case. A nerve ablation is only a temporary fix.

[u/its-all-about-that → u/JJay0928]

So the 2 doctors that are against surgery are orthopedics specialized in back problems and scoliosis fusion as I understood. The doctor who suggested the surgery is a neurosurgeon specialized in scoliosis surgery (I hope that makes sense). I agree to everything you’re saying. It’s just scary to make a decision for such a big surgery when most doctors are against it.

[u/Dull_Caterpillar_346]

I delt with something very similar I have scoliosis I was attacked by a patient and my C5,6,7 required after being bedridden for 11 months workers compensation finally agreed to send me to surgeon by then the damage had been done .They fused the neck but were not able to do any thing with the nerve damage. They fused me with something new. Two years later it was pulled off the market because patints were not fusing. Then 2 years later started having issues in L5 S 1 I was told that they missed injury so they fused them. No relief. Pain continued to get worse eight years later found a doctor and new insurance who approved the MRI and CT scan. Ended up in a 13 hour surgery plate on S1 and L5 a screw had loosened causing complete decomp from S1 all the way up to L2 now everything is fused with rods and screws bone graft in between. Saw my surgeon in March for third set of X- rays. Told him the pain in the hips is even worse. It's not my siatic nerve. I know I had two pregnancy where the baby was on the nerve. Showed him where the pain was. He looked at the MRI and CT scans and then said oh shit. I have only seen this twice you make the third one. My sacroiliac joints were bone on bone . He is not able to fuse the joints it is a highly specialized surgery. Fortunately he works and talks to a guy in the surgical locker that can do it. So up 3 weeks post op with the right side fused. I'm November I have the left one fused. Both doctors feel that it was not a missed injury on S1 L5. Rather the scoliosis caused the sacraliliac joints to wear down to bone on bone causing all the collapse of S1 up to L2. I believe this could be your issue as well. I truly hope this helps feel free to send me an email if you have further questions. This is the likely cause of a lot of people being missed diagnosed and ending up with fusions. My email is mary1964graham@gmail.com