Hiya, not really to sure how to start this as im new to this i have been suffering for the last 3 years it has just felt like my whole life has been stolen from the moment i was diagnosed with CM i had the surgery and it went wrong i woke up half way through the surgery, when i woke up in recovery i was told it had gone wrong and i would ve going straight back into theater for a V.P shunt to be fitted which i am now on my 3rd shunt as my body rejects them! And to top it all off i have alot of other illness’s despise all this the one thing that upsets me most is no one will employ me as i get to sick im 21 years old and cant plan anything for my future it terrifies me 
just wondering if anyone has any advice for me.
I’m sorry for your pain and the set backs. See if you can apply for disability or see if you can find a work from home position. I know it’s not an ideal solution, working from home, but it can help a little bit.
Keep your chin up, we are here for you whenever you need us. I’m sending you all the good juju I can muster.
I would also maybe suggest seeing some other Chiari specialists about what happened and what your next steps should be. Sometimes a second opinion or different perspective can help.
I do hope you feel better soon. <3
Hi NieNie thanks for the suggestions i am currently on esa going for a work based interview soon which i have done before and got rejected! but my local job center wont help me find work as they say no one would employ me so my doctor has suggested i try the work based interview again and if i don't get accepted then ill have to appeal at court but my doctor said she will stand by me 100% which is a relief.. and thanks for the juju (:
Hi Nykki thank you for your advice to its a great help since ive been on this site (which i wish i found 3 years ago!) ive realized people seem to know a hell of alot more then i do about chiari malformation.. i really wasn't told much at all i was treated in Southampton general where me and my family were basically told if i didn't have the decompression surgery with in the month of being diagnosed with CM that i would loose the loss of my feet and hands and would probably ended up dead! basically so i didn't have any choice after having the decompression surgery and it going wrong my whole life has turned into one big illness it seems im not sure if anyone else suffers with the same symptoms as me but i have head convulsions now since the surgery they say its not due to my V.P shunt but i get horrible tension headaches which cause me to go blurred vision have fluid run like a tap from my nose ears and i can also taste the fluid in the back of my throat which isn't very pleasant i scream in pain with them and get rushed to hospital where i am given morphine straight away then i wake up and its like nothing has happened!?? these can happen once every blue moon where i go months without one to sometimes having one every day of the week! my surgeon gave me the answer of its just part of your illness.. i would love to be able to speak to a Chiari specialist and maybe finally get some answers for whats going on with me! (: how do i contact them?
thank you (: xx
thats okay nykki (:
ive been talking to a lady on here and she has suggested some people near me and im getting in contact with them (: thank you for everything (:
take care,
Maria
Marialouise, I’m so glad you have a couple leads, it harder for us in the U.S. to point you in the right direction. There a few things that I think leave room for improvement. First off it sounds like you have a perpetual CSF leak- there should never be CSF flowing outside of your dura (brain and spinal cord) or your shunt. I do not have a shunt but pretty sure that even if the shunt becomes clogged or non- operational there should not be overflow coming out of your nose or ears. I would be full of pointed questions to an NS about this.
The next thing that we can look into is if your decompression was adequate. For some people a bony decompression is not enough, they need the dura opened and a new dura sewed in to create more space inside the brain cavity. Some people get the duraplasty done but no plate attached to the back of the skull- scar tissue can grow and bind down the area that was supposed to opened up, defeating the whole purpose of creating more space.
Ehlers Danlos Syndrome is common with chiarians. People with EDS are at risk for developing or having congenital types of Cranio cervical instability. CCI symptoms mimick Chiari symptoms. There are some great videos about CCI in chiarians who have EDS.
CSF.org
Videos
Metropolitan area
Watch everything about EDS and Cranio cervical instability
You can get an idea if EDS is something you might have by googling the Brighton Criteria and the Beighton Criteria. eDS is also called Hypermobility syndrome.
Sending you prayers, Jenn
Ps please keep us up to date with you 
Pss I’m all about you finding a new NS.