How does this read? I'm reaching out on a couple of message boards where old folks suffer with advanced osteoporosis:
"I'm in bad shape, can’t stand erect, in 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 pharmaceutical intervention 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. Yeah both of them used those adjectives. 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 noted that I have a metabolic bone work up and get infusions which 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. If anyone has been in a similar situation, any bit of advise would be greatly appreciated. Thank you in advance.
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Lisannn
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After a parathyroid tumor nearly destroyed my spine, wrists, nerves...severe OP by age 51...I decided to go on Tymlos, it's the bone builder one, like Forteo. I refused all the other OP meds, as my neurosurgeon said do not take them, they are dangerous and will prevent healing of fractures and fusions. I currently have 10 thoracic/lumbar fractures, two have fractured twice, and 6 thoracic/lumbar discs that are bone-on-bone, just gone. I have four fusions healing from prior surgeries. I need more fusions, but last week, neurosurgeon said we need me stronger for the surgery, the weight of the hardware is too much for a weaker area of OP...but he has seen the new bone development through the O-Arm during kyphoplasty. Last MRI showed the fusions at L4-Co1 (tailbone) are strong and holding, no sinking, and he is very pleased with the 6 vertebrae with osteoblasts showing healing fast, they circle around the cemented vertebrae. I've done a year of Tymlos, and feel stronger...it was a rough start, two weeks of side effects, then I got off it for two days, went back on it and no side effects. I'll do another year of Tymlos, and I added Strontium a month ago. I'm about to be 63, still have rough days, but they are due to the discs at this point, maybe one or two fractures.
When I was sixty I had hoped to have spinal surgery in the UK - The surgeon who eventually saw me explained that my papers had been sent to all the 9 surgeons at the specialist spinal centre and that really no one considered the 'risk' would be worth doing any surgery as my spinal bones are too fragile. - At that time DEXA showed -3.1 spine -2.4 hips. - The risks in 'lay terms' as I understood it for me included the number of pins / holding screws/ metal work needed with 8 fractures and fragile bone would be high, any one of these could damage the bones more then repairing them; they could also come 'loose' and cause issues such as more pain than I currently have or spinal cord damage; pain levels great post surgery could also be at a higher level than pre surgery - All in all for me the picture wasn't great.
I also had issues with pain management and until that was more under control with Butec Transdermal Patches I couldn't even think stright and let a lone plan what to do next!
I would be very interested to hear others news of successful surgery - I go hope you are able to find a surgeon who can help you.
Thank you for sharing. Your experiences nearly mirror my own with regard to me not being a candidate for the surgeries necessary to correct my the damages to my spine. I realize that what these surgeons have said about the risks being too high is reason not to dare undergo any such surgeries at this time and I fear maybe never. I’ve refrained from taking any bone medications thus far for fear of the risky side effects. So I’m feeling sort of stuck without much recourse. After reading the case study I will link below, my thoughts have been to locate a capable & motivated surgeon who might do a similar protocol with me. I just don’t want to be going this alone in trying to coordinate a surgeon with an endocrinologist or rheumatologist. I feel up to now that I’ve really been fending for myself and the doctors in their respective specialties show no interest in taking me on aside from prescribing bone medication, pain medicine, and/or PT. PLEASE have a look at this study and let me know what you think. Thanks ahead.
Lisann, I am going to try to reply to both your posts without making my own post too long.
I am in a very similar situation to you at 56yrs. I have severe osteoporosis, 4 vertebral fractures, spinal fusion from T4 to L4 and thankfully have the use of my legs. However, I have adult spinal deformity which means I have severe kyphosis resulting in my head being forward of my body, severe fatigue after minor activities due to the energy it takes, and the inability to walk more than a few metres without my Nordic walking stick to help me. I have completed 2 years of Teriparatide and am now on annual Zoledronic acid infusions. I will do anything it takes to get my life back. I have embraced medications as yes, they have side effects, but the pain of fractures and the near paralysis outweigh any pesky side effects. I do not want to spend the rest of my life like this without exhausting all the possibilities there may be. I too am hopeful for corrective surgery and will have to get it done abroad.
In relation to the case report you linked.
1. This patient had osteopaenia not severe osteoporosis, so her T and Z scores were < -2.5 and your scores are very different. So, we really cannot compare fairly.
2. Prior to surgery, she was willing to accept bone building medications ie Teriparitide. She also was optimised from a nutrition and smoking perspective. She accepted pain medication therapy and physiotherapy.
3. Her surgery was very extensive and that is not to be ignored. She had incisions along her back and also her abdomen. This is extremely major surgery. Pain will be an issue and also muscles will be cut during the surgery. The stronger they are in advance, the better. The fact that the case report mentions two surgeons tells us that this surgery took many, many hours.
I suppose I would suggest to you that in order to be considered for corrective surgery, we must really do the best for ourselves in advance. This means taking all the advice and help that there is. Your poor bones really are quite weak, so please reconsider taking bone building agents, pain medication and physiotherapy. Diet, supplements and exercise should be a given as part of what we do. I am not sure why you call the OP medications dangerous. They would not be allowed into circulation if that were true. Side effects, yes.
You are unlikely to agree with a lot I have posted here. I am trying to tell you experience, which you asked for in the first post. I have added an opinion on the case report.
I do not think you have been left to your own devices. It sounds like you have been offered the best all-discipline treatments there are, and it is a little unfortunate that for your own reasons you feel you cannot avail of them. I do wish you the best.
I deeply appreciate and thank you for taking the time to read that case study, evaluate and compare our circumstances. Having other people’s experiences and input can be very helpful in decision making processes which is why I’m here. I’m also touched by your circumstances and that through this painful journey you remain optimistic. There are many factors to weigh in when faced with complications from this disease. You’ve given me much to think about and take into consideration. Thank you.
It is exciting that for the lady who had the surgery it is reported that yes she got her 'life back' - so it could be worth more enquiries, I would be very tempted to follow up if this had happened in the UK, I too would love to get the 6" back that I lost!!
Having said that I realised before reading emersee thoughtful message this lady's bones are in better shape than mine. Her physical abilities pre op are like to mine, I was interested she had been on Teriparitide I was put on two years of Forteo when I had the 8 fractures. I have also been very fortunate with the support of an excellent physio, I do my physio workout daily, go to weekly hydro and three weekly visits to a McTimoney practitioner so my core strength is far better than expected, my pain is sort of under control, but I still do have pain. Thing that I thought about was I always have been physically in good shape, so when this happened I had a good start, I have always be average to slightly under weight for my height and never smoked etc. Without wanted to sound rude I wondered how much pre programme work this lady had to go through before the op? Had she perhaps not had a good starting point before back, neck, hip etc problems took over and then she found it hard to 'start to excercise because everthing was too painful' - Would love to know more! -
One thing to hold on to is hope - It's not that I've given up the idea of surgery, but I have realised for my own wellbeing I needed to work with what's the new me. So our house is altered to meet my needs, in order to sit and walk (all be it limited) I wear a brace, so that we can still go for walks, go shopping I have a wheelchair and scooter etc. etc. If I can cope with and adapt to all that change then should surgery be an option I'm sure I'd be able to cope with that too.
It would be good to hear directly from someone who has had spinal surgery and also has OS - Good luck in exploring further options of medication and surgery Lisannn I'm sorry not to be able to help directly.
I also believe in avoiding their drugs. Are there any functional medicine doctors around? I believe in vibration therapy…no more than 30 Hz. Check out the Marodyne LIV on YouTube.
May I ask why you believe in avoiding OP medications, which have been proven to increase bone density? Also, can you provide a link to any positive research on vibration therapy? I would be interested to read it.
Great to see you sharing information. Just a reminder, again, that we do have a fact sheet on vibration therapy which provides the current expert view based on the research - the different types and whether they strengthen bones and are safe to use - strwebprdmedia.blob.core.wi...
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