I’ve had back pain since I was 12. And unlike what my surgeon at the time told me, it didn’t get better with lower back surgery when I was 13. It made it worse down the line. Anyway, It is SO HARD to find smart docs who think outside of the fat-phobic & all the other phobic boxes and actually take the time to figure out what would really work for each person. Holistic medicine and exercise helps but there’s so much you can do when you are in excruciating and/or chronic pain. I hope you are able to find your medical team & protocols to help fix the root cause and not just get pseudo bandaids.
I have grade 3 spondylolisthesis at L4/L5, where I also have spina bifida occulta and transitional vertebra (several of my vertebra didn’t form right in utero)… took many years for diagnoses and then was shuffled around between PT and fat-shamers for years. Finally a few years ago I met a doctor who specializes in congenital defects like mine and he said he could fix it surgically (it would be a lot of hardware to fuse the spine), but they’d have to go through the abdomen, which requires the help of a thoracic surgeon. None of the thoracic surgeons in the county (a huge metro area) will work on a patient with a bmi over 28 or some shit. He said he’s willing to do the surgery but he needs help and won’t get it.
He says my leg pain and paralysis could be alleviated but I’d definitely have pain from the fusion. Then he says the surgery would need revisions every 1-2 years for the rest of my life, due to my age (40s) and the nature of the damage. I’d be trading in one lifetime pain for another, if I could get the surgeries.
So even if I can lose enough weight to allow me the surgery (unlikely), science says I’ll regain that weight (with interest), so I could theoretically get the initial surgery and then I would be ineligible for revisions because my body did what science predicted it would do?
He had no suggestions except for swallowing some balloon device that would fill my stomach and prevent me from eating. I said it was bold to assume my size is due to overeating without asking about my eating habits and ended the visit.
I use a wheelchair when I need to walk or stand more than 5 minutes. I don’t mind the wheels, but it does make life less convenient. But I gained a lot of independence when I got my chair.
The worst part is knowing that someday things will worsen to the point where I will not be able to urinate or move my bowels on my own, and that will be a medical emergency, when they’ll be forced to take surgical action. Since they’re not willing to act when it’s not an emergency, and now I live in a rural medically-underserved area, I suspect this is how I’m going to die.
Jen, I'm so sorry. That sounds awful in every way. Too many doctors seem to add insult to injury whenever possible. I hope you're able to find some relief somehow.
It’s incredible how these doctors think we are expendable simply because they didn’t learn to care for people like us. You really can’t even pinpoint one specific doctor either— it’s the whole damn system that’s the problem.
I’ve had back pain since I was 12. And unlike what my surgeon at the time told me, it didn’t get better with lower back surgery when I was 13. It made it worse down the line. Anyway, It is SO HARD to find smart docs who think outside of the fat-phobic & all the other phobic boxes and actually take the time to figure out what would really work for each person. Holistic medicine and exercise helps but there’s so much you can do when you are in excruciating and/or chronic pain. I hope you are able to find your medical team & protocols to help fix the root cause and not just get pseudo bandaids.
Soph, thanks. Pseudo band aids is right. And the next time some white coat suggests PT I'm going to smack them for both of us :-)
I have grade 3 spondylolisthesis at L4/L5, where I also have spina bifida occulta and transitional vertebra (several of my vertebra didn’t form right in utero)… took many years for diagnoses and then was shuffled around between PT and fat-shamers for years. Finally a few years ago I met a doctor who specializes in congenital defects like mine and he said he could fix it surgically (it would be a lot of hardware to fuse the spine), but they’d have to go through the abdomen, which requires the help of a thoracic surgeon. None of the thoracic surgeons in the county (a huge metro area) will work on a patient with a bmi over 28 or some shit. He said he’s willing to do the surgery but he needs help and won’t get it.
He says my leg pain and paralysis could be alleviated but I’d definitely have pain from the fusion. Then he says the surgery would need revisions every 1-2 years for the rest of my life, due to my age (40s) and the nature of the damage. I’d be trading in one lifetime pain for another, if I could get the surgeries.
So even if I can lose enough weight to allow me the surgery (unlikely), science says I’ll regain that weight (with interest), so I could theoretically get the initial surgery and then I would be ineligible for revisions because my body did what science predicted it would do?
He had no suggestions except for swallowing some balloon device that would fill my stomach and prevent me from eating. I said it was bold to assume my size is due to overeating without asking about my eating habits and ended the visit.
I use a wheelchair when I need to walk or stand more than 5 minutes. I don’t mind the wheels, but it does make life less convenient. But I gained a lot of independence when I got my chair.
The worst part is knowing that someday things will worsen to the point where I will not be able to urinate or move my bowels on my own, and that will be a medical emergency, when they’ll be forced to take surgical action. Since they’re not willing to act when it’s not an emergency, and now I live in a rural medically-underserved area, I suspect this is how I’m going to die.
Jen, I'm so sorry. That sounds awful in every way. Too many doctors seem to add insult to injury whenever possible. I hope you're able to find some relief somehow.
It’s incredible how these doctors think we are expendable simply because they didn’t learn to care for people like us. You really can’t even pinpoint one specific doctor either— it’s the whole damn system that’s the problem.
I hope you get some relief too.