help

[Edna1966]

I live in Huntington Wv,I was diagnosed with ACM type 1 with sryingomilia,they did the decompression surgery sept of 1998, I still suffer so much pain,headaches,arm and leg pain and weakness..i do not have any form of pain management,what little meds i am on they are taking me off of..not sure i can fight this Birth defect any longer,I am 43 mother of 2 and grandmother to 6,just seems there is no fight left in me......anyone feel this way at times or is it just me?

[*Stormy*]

Hello and Welcome

I don't have much advice for you as I am way behind you in the way of surgery (Dec 09) but one thing that stuck out for me in your post...if you are still dealing with so much pain, why are they taking  you off meds? Instead they should be digging to find out the answers on why you need to meds in the first place!! If they have discovered that your pain is coming from nerve damage then they should be looking for alternative solutions that will help you. Like Selma said, there are things like nerve blocks or I have heard about this new thing, I think it's called a neuromuscular stimulator?
Regardless, if you don't have a Dr that is willing to keep on looking to find a effective way of relief, then maybe you should look for a new one? Unfortunately, with this condition, the only one that will really fight for us is us and that can be extremely tiring!! Honestly, I feel like giving up at least once a week but then I pick myself up and continue on. I am really sorry to hear that after 12 years you are still dealing with ongoing issues. I really hope that you are able to finally find some relief :)
Take care
Carolyn

[selmaS]

HI Edna,

U may want to follow Chiari Wolf's thread on Central Block....it may be an option for u seeing that u do indeed have nerve damage and it sounds like u do need a PM plan.

SO glad u found us and I pray u find the support and info u seek :  )

"selma"

[Edna1966]

Thank you for the welcome,Yes I have MRI's about 2 times a year,When they found the ACM I had what they quote "Syringomyelia from c2 to the nearly entire length of the spinal cord" after the decompression surgery I now only have several syrinx,the syringomyelia ruptured disc,several of them,there is nerve damage,but since they have stayed the same size now for several yrs they dont want to do anything,I think this is great,when I first found out i had this there was hardly any information,and no one to chat with about it,,There really needs to be more awareness about people that live with this,once again thank you for the warm welcome
Edna

[selmaS]

HI and welcome to the Chiari forum.

I u r deff not alone in how u feel, and that is y this forum is so important to us all...we have some one that understands and supports us....we r not crazy or riddled with anxiety....unless it is due to someone that refuses to listen or hear what we have to say.

Have u had a MRI since ur surgery to rule out scar tissue or even other related issues?....like, tethered cord or syringomyelia, IIH, EDS, ....

Glad to have u as part of our little family here, so sorry the reason u had to seek us out.

"selma"