MPN Voice


I had a growth/neuroma on my spine, removed 1997, first diagnosed 1995, but because of that I have scoliosis which seems to have worsened over the years. I have epilepsy as well, so I get fractured ribs, I have been told "you've practically cracked every rib in your body?" [chiropractor] is there any other way of bolstering my ribs after they have broken other than just "grin and bear it!" My last episode, a seizure, I fractured three ribs [sternum] and one left side and broke two on my right hand side {fell onto a glasses case} after grinning and bearing it taking it easy for two months they seemed to have healed but have gained 1/2 stone, more pressure for the rib cage! I'm nearing the end of use of my chiropractor, getting too fragile, maybe I should have a permanent girdle or metal armor?

5 Replies

Hi, I am sorry to hear you are having this problem, it is very painful and distressing. Do you have a MPN and if so, which one? I think it would be best if you speak to your GP about this for their advice on what you can do. Best wishes, Maz


Yes I will stop complaining about this one and get in touch with my GP I've been putting this on a back burner for too long, it's uncomfortable especially fracturing ribs, grinning and bearing it to long, thanks Maz



Will have to wait for DNA/blood test results for cause of scoliosis whether it NF2/NF3 that started it in the first place, 3-6 months!

all the best Adlon57


Hi there,

I had scoliosis corrected when I was 12, in 1982. Mine was caused by neurofibromatosis-1. You mentioned a neuroma; do you have nf?

The fact your bones break so easily suggests to me that you may be osteopoenic. Ask your GP for a DEXA scan that'll show how strong your bones are.


My scoliosis started after the growth of a neuroma, which started in 1995, not found since late 1997, [MRI scan] by then the scoliosis had started, only part of it was removed off my spinal cord, about the size of a walnut, I learnt much later that growth could have regrown, accelerating my scoliosis, because of the ignorance of my condition neurofibromatosis and scoliosis at that time, nothing was done about it, I went myself to a chiropractor, whom I still go to, more for relief than to straighten my spine, I think they call it rotary scoliosis, because of my epilepsy, my chiropractor announced "you have probably fractured every rib in your body!" my bones, at 60 are pretty brittle, I can fracture a rib while in bed. My last episode in February, I fractured four ribs and broke two, ironically falling off an exercise bike! Being overweight does not help matters!

Interesting you say 12 in 1982, I was 49 at the time in 1995, so being more 'mature' any correction would have been out of the question? I recently asked my GP about my chest, he agreed a girdle/brace or surgery would now not be a viable alternative!

I am currently waiting results about my neurofibromatosis whether it is NF2 neurofibromatosis type 2 or schwannamatosis NF3, DNA/Blood test.

I have not heard of osteoponic or a DEXA scan, my local GP, I swear is a bit afraid of me, my condition seems to be a bit over his head? When I hear the results of my DNA/Blood scan probably within 3 months I will ask my specialist about your theory, very interesting and well worth going into more inspection! Thanks for your suggestion!


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