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I need help! My Chiari Malformation symptoms are getting worse...

Hi, my name is Ellie, I’m 21 and live in the UK. I was diagnosed with Chiari Malformation when I was 15 years old and ever since then have suffered on and off with pains, however, this last year has seen a massive increase in my pain and symptoms, which have included passing out and being taken to A&E. I have had MRI scans done and there does not seem to be any progression in my Malformation - nothing has physically changed. I wanted to know if anyone else has ever been in this position before? And has anyone had any successful medication that has helped them even a little bit? I have been offered nothing and cannot perform any daily activities without severe pain. I am reaching the point where I do not feel I can carry on with this pain, and am being referred back to my NL after months of begging to be heard and tears cried to my doctor. Lastly, I just wanted to know if anyone can recommend any surgery or medication, either in the UK or America that is pioneering or has worked for them, as I will save as much money as needed to get this help. I eventually want children, and do not see at the moment how I can raise kids when I am in this pain, as I can barely look after myself. Thank you for your time reading this, Ellie X
2 Responses
620923 tn?1452915648
COMMUNITY LEADER
Hi and welcome to the Chiari forum.

There were no meds that helped me prior to my having surgery.....it was the only thing that helped me feel better....It is very important to educate yourself on Chiari, Drs and ALL related conditions....surgery is not a cure and depending on what co-morbid conditions you may have could determine the outcome of surgery for you....so make sure you take time to look into all aspects .
Know the Dr needs to be a true Chiari specialist that will look at all related conditions.....
There is a list in the UK The Ann Conroy Trust...use that to research Drs over there.

You may also want to have a Dr over there consult with a specialist over here in the USA to see if they can offer some insight....
620923 tn?1452915648
COMMUNITY LEADER
I wanted to add that any new stress in your life can trigger symptoms to flare....and sometimes will flare for no reason  if it is not an activity we are doing...but all should be looked at to see if it is a possibility....just as easily as symptoms worsen and flare that can go away too for short periods or long periods....
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