needing advice

[beccasqueeze]

Hi, 2 years I was told I had chiari malformation after having an mri scan to find out what was causing my migraines and pains in my eyes which they havery now put down to this. I was to scared at the time to Google anything to do with it and just carried on with my life as it had already taken so many parts of my life away stopping me going to university and losing most of my mobility in my shoulder after an operation that went wrong but I felt like it was staying the way it had always been a couple of migraines a month occasional being dissy and what not but in the last few months it's got alot worse I'm constantly dissy and have constantly got a sore head or horrible migraines that make me sick. Is this something I should be concerned about or do I just have to put up with this. Thank you for any help! X

[beccasqueeze]

Thanks going to get my doctor to get it sorted tomorrow and if possible go to see a different doctor who knows more, thank you for all the help x

[selmaS]

  Here my Drs said any MRI past 6 months is considered old and a new one would be done to check for changes....so, I would suspect a new MRI is due for you......

Keep us posted on your Dr search. Good Luck.

[beccasqueeze]

Hi I haven't had an mri in nearly 18 months and haven't heard from any of the doctors I had, they didn't test me for anything else after my last scan I was showed my scans and that was it. Thanks I'll have a look x

[selmaS]

  Hi and welcome to the Chiari forum.

  Chiari symptoms do cycle and they can get worse after something triggers a flare or it is possible to have a CSF obstruction that can cause a syrinx to form over time, this too can change the symptoms you experience. When was your last MRI? Did they test you for Syringomyelia tethered cord, POTS, ICP, CCI, Ehlers-Danlos?...there are related conditions and you should be tested for ALL rerlated conditions.

We do have a list of Drs in the UK from the Ann Conroy Trust that treat Chiari...so follow the link to the list of Drs for the UK list.

[beccasqueeze]

Hi, unfortunately I live in the UK and doctors here don't seem to have much of a clue about it and have never given any advice to me about my condition other than i know its 13.5mm but still don't know what that means. It's extremely confusing and hard to deal with, I'm only 19 but feel like I'm trapped with no where to turn.x

[Elisaandbucky]

Welcome to a friendly and supportive place. I am sorry to hear about all the symptoms you are living with. It would be a good thing to go see a chiari specialist so that you can begin to go the right direction down the healthcare path. On this forum, there is a list of chiari doctors that have treated other members. There is no endorsement or recommendation, it is a list that other members keep adding to when they like a doctor. A valuable tool to have when you do see the doctor is a journal of the symptoms you experience. Post back to let us know what you are thinking.