Arnold-Chiari Malformation Support Group
Arnold-Chiari malformation, sometimes referred to as 'Chiari malformation' or ACM, is a congenital anomaly of the brain. Arnold-Chiari Malformation II occurs in almost all children born with both spina bifida and hydrocephalus, but ACM I is typically seen in children and adults without spina bifida.
Hi, I am new here so please be gentle!
My name is Lucy and this summer, after years of being treated like a hypochondriac, I was diagnosed with Chiari Malformation and Syringomyelia. The surgeries may be in the near future for me but not right now. I don't really want to have any seeing as they are unlikely to help me feel better but will consider them if my neurosurgeon is worried about things getting a lot worse without.
At 16 this has completely turned my life upside-down, I am in constant pain in my limbs, hip, head and spine and my mobility has been severely affected (considering getting a wheelchair). I am unable to go to college or work as I am active for maybe 2 hours a day at most.
I know there is no easy answer to this but how has anyone else coped with such a devastating turn of events?
I feel completely lost and helpless, I had so many ambitions and things to look forward to which now feel completely out of reach.
I don't know anyone with either problem so if people could please share their experiences with me; it may be of consolation to me that I'm not the only person in the world coping with it.
Thank you.
My name is Lucy and this summer, after years of being treated like a hypochondriac, I was diagnosed with Chiari Malformation and Syringomyelia. The surgeries may be in the near future for me but not right now. I don't really want to have any seeing as they are unlikely to help me feel better but will consider them if my neurosurgeon is worried about things getting a lot worse without.
At 16 this has completely turned my life upside-down, I am in constant pain in my limbs, hip, head and spine and my mobility has been severely affected (considering getting a wheelchair). I am unable to go to college or work as I am active for maybe 2 hours a day at most.
I know there is no easy answer to this but how has anyone else coped with such a devastating turn of events?
I feel completely lost and helpless, I had so many ambitions and things to look forward to which now feel completely out of reach.
I don't know anyone with either problem so if people could please share their experiences with me; it may be of consolation to me that I'm not the only person in the world coping with it.
Thank you.
deleted_user
I am a lot older (34) but was just diagnosed this year with chiari. I had the sypmtoms for many years but was misdiagnosed. I had the surgery in July and it has made all the difference. I still have a few bad days but I am still healing. don't ever give up on your hopes and dreams you will still achieve them. You may have to take it slow but you will do it. After surgery most of my symptoms went away. They only really act up when I try to do too much in one day. It will get better. I hope you have a good surgeon.
deleted_user
Hi! Don't give up! My twin sister was misdiagnosed since the age of 15, had the decompression surgery at 34. Its a scary thing to go through, but my twins symptoms have almost diminished. Just make sure that you do alot of research, make sure your surgeon recommends you to a good post-surgical program to help you get through the healing process. Don't be afraid to learn everything possible about your diagnosis, it will help you get through this!
deleted_user
I was diagnoised in 2004 with CM and SM and my life has changed. There has been a lot of bad days but some good. I am 40 I am a college student and it has been a real struggle but I wont give up. I still have a lot of living to do. I look toward the future with hope. I am in pain right now but I need to be online to help myself as well as someone else. Let that inter strengh kick in and believe that it is going to get better and we all do the best we can on our good days.
deleted_user
Hi Lucy, Welcome. I had my surgery in 2000. Before the surgery I had to have assistance with all of my daily activities, and could barely talk. I will never be 100%, but I didn't get a proper diagnosis and the surgery until I was 45. You have a great future to plan. I agree with everyone who advises educating yourself, and when you do have the surgery, take it easy and let your body heal. I wish you the best of luck, and hope to hear how you do. Hugs, Deb
deleted_user
Hey Lucy. Wow girl! I so know what you are going through! I am 20 and have feelings of complete dispair when I think about what I could be doing right now with my life. I am a pre-nursing student, but I have had to take things much slower than a lot of my good friends, many of which are already nurses and in the working field. Just know that if you keep setting small goals (and I mean small), you will soon be able to achieve those that seem so far away right now. Look for the positive in every situation. Remember to smile, and serve others. It can help you to forget your pain, even if only for a little while. I am cheering you on girl! :) Stay strong!!
deleted_user
Well you are not the only one i also was told for many years that it was just headaches and some close friend and family thought i was just makeing it up but Now htat i was diagrosed with Chiari on June 19 of this year and that they have seen what i go throught they now i am not going crazy.I know where you are coming from I don't know any one else with this problem acept the people have have met on this web site witch have helped me alot. I am also looking at haveing surgery and am scared about it because i have 3 young children. Well try to always be busy and it helps you forget about this new way of life. I had to change alot of things already i am a crafter and sewer and now i can only do about 1/2 houre of either at a time or i am in to much pain to even get to bed. I wich you lots of look and if you need some one to talk to i will be here for you.
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