My understanding of it all:
the link between ms and ccsvi has not been proven, so it is unknown what benefit treating ccsvi has. the greater the benefit, the greater risk can be allowed. as long as no benefit is known, NO risk should be allowed
when it comes to risk assessment, it is both a question of how likely it is that problems will occur, and it is a question of how big a problem can occur
my understanding of it is that with ballooning, it is just a very slim chance of relatively small problems occurring, but with stenting it is a very slim chance of more severe problems occurring. because of the risks involved with stenting.
for my own sake, i would prefer ballooning, as i don't know the risks involved with stenting. but we also know that ballooning the veins is not effective long term, the veins will restenose. we also know that the chances of restenosis is smaller with stents if they are successfully done. i am paying for it myself, and i do not have the finances to go abroad every six or eight months to have new examinations and new procedures done. it is not an option for me. i can not only look at the risk of stenting versus ballooning, i also have to look at the risk of my ms progressing, compared to the options i have.
i have decided that the best option for me is to try this procedure, even if it has not been scientifically proven, my decision is only based on other patients testimonies.
i have decided that i will go for stents if that is what the doc thinks is the best available treatment for me. as i can not wait for any future treatments, i need to choose from what is available to me now.
there is alot of unknowns, but i know the risk involved if i do not do anything at all, as i am going downhill, and going downhill very quickly.
i would wish for my neurologist believing in this treatment, and referring me to the cardiovascular department of the hospital for examination and angioplasty treatment. payed for by the national health insurance. i would wish i could have a local follow up consultation and re-examination. i do wish that the would reballoon me, if stenosis reoccurred, all free of charge, all relatively harmless, all relatively cheap, at least for me. but i will just have to expect that it will not happen until it has been scientifically proven, and approved by the authorities, and i will probably be beyond repair by then.
with going to bulgaria, it will cost me 5000 euros, plus some cheap flights and accommodation, i will have a treatment that i will most probably benefit from (judging by the reports from patients), it will be preformed by a highly qualified and experienced team of doctors, in a modern state of the art medical facility. ill take my chances.
they can offer me angioplasty, that i can not afford in the long run, and they can offer me today's relatively low risk stents. they can not offer me the stent of the future, especially made for veins.
i have decided ill take my chances
goodness me that turned into a long post, sorry about that