SOS for advice please

[Lisannn]

In in bad shape can’t stand erect pain all the time compression fractures up & down lumbar to thoracic. It’s been about 3 years in total 11 compression fractures. I’ve had 3 Kyphoplasty’s but have refused any of the pharmaceutical treatments prescribed for bone density issues; tried and can’t/don’t take pain medication. My last DEXA was in 2022. -3.5 spine -3.2 hips. The last two spine surgeons I consulted with said my bones looked like ghosts and I was a time bomb waiting to go off. They didn’t even want to hear about my adherence to dietary/ supplemental and appropriate exercising for bone & muscle building but insisted I need to be on a pharmaceutical. In early March this year that orthopedic surgeon said in his notes I need a metabolic bone work up and have infusions which can have”light chemo like side effects”. I have an appointment scheduled with an endocrinologist end of this month. I’m very concerned about taking any of these pseudo bone building drugs. All of them from what I’ve read are dangerous especially if you don’t have a committed physician monitoring you. My objective is to be able to have a specialized spine orthopedic or neuro surgeon perform corrective surgery on my now deformed/kyphotic thoracic. No surgeon I’ve consulted with will touch me due to my bone fragility. Anyone been in my situation?

[WreckemTech]

I so wish I had advice to give you, but I read your post with interest because my mother has severe kyphosis and severe pain due to vertebral fractures. She has not taken any of the osteoporosis medications yet either. OTC pain meds don't help, using a TENS unit has not relieved the pain. I was wondering about kyphoplasty, and you mentioned you had done that. Did that procedure help with pain or in any way?

[Lisannn in reply to WreckemTech]

I’m sorry your mom is going through this. She’s blessed to have you. The answer is no. I’ve had three Kyphoplasty’s L2, L5 & T12. Absolutely no relief from the pain. I also had an unsuccessful Medial Branch Block procedure at L2, 3 & 4. My pain escalated after that so severe that I could hardly move at all. I was unable to go to my PT & chiropractic appointments for two weeks following the branch block. I went for another MRI because it felt like I might’ve had another compression fracture. I did have another fracture at T11. That would be the 11th vertebral fracture in the space of 2 years. I think I fractured when I had to lie belly down on the surgical table for that last procedure. I can’t lie belly down due to the kyphosis nightmare. I only had a local anesthesia and was screaming as the surgical team was helping me position my body face down on the table. When I got home and the local anesthesia wore off the pain in my back exasperated to an almost intolerable level. I dislike every pain medication prescribed to me but I took 2 of the 50mg tramadol as I was desperate for relief. This only made me light headed and groggy enough to fall asleep, it also gave me an awful headache. I stopped taking them after less than a week. Nothing takes away this pain. It’s a terribly bizarre sort of pain like my entire back is one stuck rectangle plate that will snap and’s break if I move the wrong way. Hurts like hell when I try to straighten and stand erect or try arching my back. I used to be so flexible, I did yoga. If I take a med for bones, I wonder if that will decrease this pain I don’t see how it would because my spine is in an abnormal position. And as a result I’ve a hiatal hernia too This whole thing is nightmarish I’m sorry to go on as I have . I’ve become so isolated as my condition limits my abilities to socialize with people

[WreckemTech in reply to Lisannn]

Thank you so much for giving me more information. If the kyphoplastys didn't relieve the pain, are they good for preserving the spine or in any way helpful? You mentioned Physical Therapy. Does that help in any way, and what type of exercises do they do? Home health physical therapy came to the facility where my mom lives do to therapy with her, but all they did was have her walk (which she was doing on her own anyway) and gave her some exercises for her feet....which as far as I could tell were not having any issues. We stopped PT services after 3 visits because it didn't seem constructive. Your experience with Tramadol sounds horrible! My mother has taken Tylenol with Codeine, and most recently Hydrocodone. Prior to that OTC pain relievers and CBD roll on, neither of which seemed to do enough, followed by the TENS unit. Have you tried an ointment like Voltaren? And lastly, have you worked with a Pain Specialist doctor? That was something I was considering.

[RubymyT]

If I didn't know better I would think I had written most of your post. My advice, take the bone builder with the least adverse effects, if possible not an injectable . I also went to a top notch ortho guy. He said he could completely straighten my spine , only problem , the rest of my body wouldn't be able to tolerate it. My organs have all shifted to compensate for the kyphosis.

I take a sheety bone builder which I'm going to try to get changed , b/c its an injectable , if you have a negative reaction to an injectable, so sad too bad , it's already in you, with something by mouth , just stop taking the med.

I go for S.I injections and epidurals. I'm 70, there is such a thing as quality of life.

I would rather have mostly manageable pain

Constant chronic pain can shorten a life and make people pretty miserable to everyone including themselves. If you are too fearful to do what specialists (get second opinions) say maybe go to counselling for living with chronic pain, maybe if the fear is settled you can be in a better mindset to make positive decisions to help yourself. Fear just like pain can change who we are. Good Luck , sorry if I sound rude.

Like I said pain changes you.

[Lisannn in reply to RubymyT]

You don’t sound rude at all. I hear you. I also have internal organs shifted. I’ve a hiatal hernia. My stomach or belly is distended and firm due to the kyphosis. My esophagus must be curved. I need to eat and swallow carefully. I have tried to address this with doctors, surgeons, chiropractor, physical therapists but none have much to say about it. I am willing at this point to try a bone med. I appreciate your sharing your insight on the differences of taking medication via injection vs oral. Of course that makes sense. The last most recent orthopedic surgeon told me I should be getting infusions. Living with this pain is maddening. I do think counseling may be worth a try. Thank you.