OK, I went ahead and got the surgery and as I expected, I’m regretting it. I’ve let them make structural changes to my body that comprised the integrity of my ribcage permanently and I don’t think it addressed my problem. I think I had/have slipped ribs but not Slipping Rib Syndrome (slipped ribs causing pain). I.E. I think my costal cartilage on the left is the same as on the right – asymptomatic. I slept till 2pm today but when I woke the old pain was back. It started coming back yesterday. It’s probably just that my surgical pain is getting less so the old pain is once again the loudest barking dog (to use Dr. Hansen’s relative pain metaphor). I’m afraid it’s turning out just as I feared. I’ve not only added another physical problem to my list but now I’m essentially bedridden for the next 4 months to a year, going through various phases of pain, all for nothing!
So if SRS isn’t my problem, I need to go back to my list of suspects. They are, in order of likelihood…
- Herniated left rectus abdominis, active for almost 20 years and requiring two surgeries. This is something my doctors all dismissed but that’s because most doctors are idiots and pretty much all available doctors are available for a reason. My core wreck is the only thing differentiating my left side from my right. The pain seems to radiate from the ab to the mid-back. This is common with rectus abdominis trigger points. I need to continue trigger point release, possibly with a trigger point expert. Perhaps I should consider getting the mesh removed. Unfortunately I’m approaching an age where people stop caring. However they never cared in the first place so I have to be my own doctor and use practitioners as tools. Anyway, the old 25 year old hernia is now my prime suspect.
- Why is my vertebral marrow glowing? Osteitis, possibly from an autoimmune illness. In a PET scan, the vertebral marrow of my lower thoracic spine lit up like a christmas tree, with the left costotransverse/costovertebral joints as the lights. The Stanford (experimental) radiologist was sure the lit up vertebral marrow was a pain generator. He said it is seen in patients with long-standing autoimmune illnesses. This is especially interesting because I was diagnosed with PMR, then RA, then GCA, a few years ago but the pain started a decade before that. So if the pain is from an autoimmune illness, I suspect it’s one that started around 2009 or 2010. I remember feeling bad in the evenings. I was drinking too much and not taking care of myself. I need to research active vertebral marrow in PET scans. I am going to make an appointment with my old local rheumatologist (Dr. Dietz doesn’t seem open to experimental results but Dr. Biswald seems like a trustworthy source to me. But why is the pain unilateral? I think my next step here is to make an appointment with Dr. Ramanujam.
- GI issue. There is definitely a GI connection. I can set off The Pain by drinking too much coffee or something spicy. The angry nerve has a branch into my stomach. While a GI problem may not be the root cause of the problem, it is definitely involved and should be considered a potential prime suspect.
- Facet Joint Syndrome/Volleyball accident – This was my original diagnosis 15 years ago from Dr. Schofferman. I think I damaged the facet joint at LT10/11 in the mid-nineties. It was sore for years, then went away however if memory serves, it felt very similar to The Pain. Perhaps it is an old injury come back to haunt me. I don’t know if it’s primarily a muscle, joint or nerve problem and the pain syndrome that I have developed over time may be different from the original problem but I don’t think so. I think it may be as simple as an arthritic facet joint.
Dark Times
I wake up in the mornings terrified. I’ve been tortured for 15 years and I can’t find a doctor that will give me (my condition), the time of day. At this point I just want it to end. I haven’t given up on the Slipping Rib Surgery completely just yet but I think that’s just a matter of time before I realize that it did nothing to address my pain, it just created new issues. I’ve lost all faith in doctors. If there were a button that would end this torture (i.e. my life) I probably would have pressed it by now. It’s not that easy to kill yourself. It’s a violation of the prime objective – survival. But a life is not worth living if it is lived above a certain pain level. We euthanize other animals, why not ourselves. I don’t want to drag this out forever. Everyone will think it’s depression and maybe they’ll be right, but most people have no idea what it’s like to live with severe chronic pain. They just can’t (or choose not to) wrap their heads around it. Empathy does not come easily to the human animal. I’m trying to be positive and heal from the surgery. This surgery is nothing like the other 5 or 6 surgeries I’ve had over the years. The recovery is long and painful and my activity is very limited. Perhaps it’s good that I’m depressed and just want to sleep all day. I won’t really know if works for up to a year. I do know I’m still in too much pain to reduce my methadone. Even 1/2 mg/day change is very noticeable and as I learned at Stanford, “pain begets pain”.
Next Steps
- Make appointment with Dr. Ramanujam
- Find a good osteopath
- Look into getting a PET/CT scan
- Experiment with stomach meds during flare-ups (drink more water)
- Research active vertebral marrow and pain that radiates to the back (from abdominal trigger points, GI, etc)