can CM get worst? can it damage your nerves more in time? I have decided not to do the surgery (decompression) since NS cannot guarrantee i will get better.
hey there how are you doing? well im the same as you very undecided if i want to hav decompression or not my neuro told me that it would take my headaches away but as for any other symptoms i have ,which i hav a lot of siezures numbness in hands and feet the list goes on and on, he is very unsure and he is the only chiari specialist in australia so im at a crossroads too… my family want me too have the surgery which is $20,000+ im just unsure. very worried about more nerve damage tho. but the same as you no guarantees that all will be well. what are all your sypmtoms? My neuro also told me that i would definately be needing the surgery in the near future but i can wait if i want. as i hav a obstruction to my spinal fluid flo, but this only happens every other day. and dam it hurts wen this happens this is the part that im really worried about not getting fixed… as i cant walk or talk properly wen this happens for a good few hours sometimes days. i think chiari can get worse definatley my chiari use to be 6mm now it is 9mm it got bigger in 10months and my symptoms hav got worse. sometimes the doctors are not very helpful…as this is a very unstudyed disease. sori about my spelling, take care of yourself peace love light and laughter varnz :]
yes it can leave permement damage, and also its is progessive, surgery can slow the progession down,
there are no guarrantees in life with anything you do, but is it still worth a try?
you have to way up your options for you, and what is right for you,
there is no right answer here,
but ive done alot of research on this, and still things arent explained,
there is no cure for chiari no magic pill, but mangement,
i had surgery do to no fluid, classified as emergency,
i knew that i would get worse without it,
im 21 wks postop. and i would like to say that i was doing really well, until 2days ago, and now i feel the same way, but im hoping it wont last,
i have a great surgeon who is moniting me, and in NZ thats a god sent,
but in saying that i have a tumor in my spine compressing my cord, which is getting worse, and that could be giving me my symptons,
i hope it helps alittle
joelene
I agree with Jolene. Chiari is definitely a progressive neurological disorder which means that it will continue to progress throughout our lives. I am under the impression that the decompression surgery will slow down this progression, but cannot guarantee to STOP it. My surgeon advised me to have the surgery sooner rather than later because he was worried about paralysis or severe nerve damage. I wasn’t diagnosed until I was 46 so I already had some nerve damage and nerve pain that I still deal with after the surgery. But I do know that my surgeon was able to lift the 25mm herniation of my brain off of my spinal cord thus preventing any paralysis. I do not regret having the surgery however we each have to make our own informed decisions 