Osteogeneza imperfecta : Hello everyone!Does... - Bone Health

Bone Health

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Osteogeneza imperfecta

monikoki profile image

Hello everyone!Does anyone know anything about this diagnosis?

I have multiple spine herniated discs lumbar and cervical,which normally should be operated but because of my bones conditions and my bones incapacity to hold scrues my trauma orthopedic dr. cannot do any surgery.

I have had last year a spinal decompression but the miracle lasted for 6 month and now I'm back and maby worse (a new 2 compressed nerve ).

Anyone in the same situation?

4 Replies

I've never heard of that (but looked it up!). It sounds like osteoporosis, only that you have it genetically and have it from birth.

I'm in a similar situation in that I cannot have spinal surgery due to the condition of my bones. (Osteoporosis) I have vertebral fractures from T10 through L1 (and L4 is an old healed fracture) and my Dr wants to do fusion from T9 to L2.

However, he suggested I get on forteo to build up my bones so that I can have the surgery.

I just got on teriparatide (forteo generic), but don't know how long I will have to wait for the results needed to proceed. I would imagine at least several months.

Perhaps ask your Dr if being on bone building meds would make surgery possible in your situation?

Forteo can only be taken for 2 years, then you have to go on something else (and do whatever is possible), or the bones revert right back to where they were.

I didn't ever want to go on any meds, but I'm in such bad shape, I haven't been able to do anything for 6 months. At this point, I'm not caring as much about possible side effects as much as I'm caring about having any kind of "real" life!

Are you able to do any of the natural (alternative) ways to help your bones? Things I am considering, if okayed (after healing from surgery), are using acupuncture (ncbi.nlm.nih.gov/pmc/articl... and low red infrared light (rouge.care/blogs/rouge-red-...

I know there was something else (besides a low intensity vibration platform), but I can't remember what it was.

Hugs and prayers for you. 🙏

Have you tried osteogenic loading with osteostrong. It’s a bone health strengthening programme

I will speak with my rheumatologist about it.Thank you.🙂

monikoki profile image
monikoki in reply to beckyiswell

Thank you for the reply. I was already on Forsteo for 18 months. My DEXA showed some improvement (from vertebral T score 4,6 went down to 3,2).Than,I was on Alendronic for almost 2 years and my last DEXA showed again bones worsening (Tscore 4.2).Now,they changed my treatment with some injections twice/year.I can just hope for some improvement.

I will look for your suggestions.

Thank you

🙂

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