hello im a 19 year old university student from the uk and its fair to say i am a shy and anxious person.Ive really only just been told that i have chiari malformation,it comes after almost a year of having strange stinging pains all around my body and constant pulpatations.Ive also had some wierd stuff happen to my vision from time to time.
Ive been to countless drs and they have in the past told me that its because i am an anxious person that i am getting these pains and that it is all in my head the university drs pointed me in the direction of the counsellors office saying that there was nothing they could do for me.
It was so frustrating because yes i am a shy and anxious person but ive been like that my whole life and ive never had these pains before i knew that this wasnt an imaginary thing u know.Eventually i went to a drs back home with my mum for support and the dr some what reluctantly agreed for me to have an MRI.The MRI showed I have type 1 chiari malformation and tbh im not sure how to feel,i feel a mixture of relief that atleast i have some idea of what is going on inside of me , but also fear i feel at the moment i dont know much about this condition and whats really going to happen about all this all i know is im being refered to a neurologist.I have no idea what is likely to happen at this first meeting with a neurologist.
I was also wondering is there actually a link between chiari malformation and anxiety problems and or depression.
Sorry to be all doom and gloom but another problem i sometimes find myself having is slight memory problems and also finding the right word to say in conversation.Is this common for people with chiari malformation.I apologise for my somewhat rambling post but as i said ive only just found out about this and have alot of questions.
I know what you mean by feeling like your lost, when I found out that my daughter had Chiari. I had no clue what it was or even why she had it. But when she was sent from her neurologist to the neurosurgeon, the neurosurgeon explained everything to me so I went home and spent days on the internet researching Chiari but it wasn't until my mother saw on a TV show that a whole family had Chiari that it put things in place that there are more people out there that had it and that they are the ones who can help you find the information out to help you through it.
You have come to the right place. This discussion group is amazing & everyone here is a expert on CM and all that goes with it. Anxiety and depression play a big part with CM. Please know you can ask us anything and you will get an honest caring answer. We have all been where you are. I also struggle for words. They call it Word Salad....you know they are there but you can't reach them. Please ask all the questions you have. We have others from the UK that may be able to help you with specific Dr. questions. Know we are here for you day and night. No question is stupid or gross. Don't be afraid....You have friends now that will be with you through the good and bad. No matter what.
I want to welcome you to your new family here. Take your time, we are all here to give you love, comfort and support. I am so sorry to hear that you had to go through several doctors to finally be diagnoised. I am here if you any questions, the website is very friendly and informative.
First of all…Welcome to the group! You will meet a lot of great people who understand what you’re going through. You have already been given some great advice.
I’m sorry you had to fight so hard for a diagnosis. Many of us have been told it’s all in our heads. Depression and anxiety are symptoms of Chiari. I suffer from both myself. I can completely relate to your comment about being relieved to finally have a diagnosis, but scared to have an invisible illness that most people have never heard of. I felt the same way. One of the most important lessons I’ve learned is…You have to be your own advocate. Don’t let people/doctors who lack knowledge in Chiari get you down. I know this is easier said than done, but get back up and keep fighting for YOU.
I have memory issues also. I forgot the color yellow the other day! I kept looking at it and I could not remember what that color was called. Who does that? I do…lol. I use to have an almost photographic memory. So, I definitely understand your frustration.
We go through a lot physically, mentally, and emotionally with Chiari. It really helps to talk to people who get it. We all help each other here:) I am so glad you found us and I look forward to getting to know you better!
Thanks alot for the replies its nice to hear from so many people who can empathise and who have had similar experiences.Thanks also for all the advice and explaining alot of things to me you all seem like such nice people,it makes me feel less alone with all this :).
hi. I just got this bit of news yesterday after a surgery in december and feeling like i was losing my damn mind. I'm in college to, getting ready this semester to get my first degree and start on my second one in the fall...i hope with all of this.
thanks so much for ur support :) there was one question on my mind which i think sounds a little rediculous but here it goes,on this site ive seen a few pictures of people who have had surgery and i find myself being reminded of a long birth mark i have on the back of my neck in the same area is it possible that this birth mark has something to do with the chiari i was wondering if anyone else has a birthmark like this TracyZ said:
Welcome !!!!
You have come to the right place. This discussion group is amazing & everyone here is a expert on CM and all that goes with it. Anxiety and depression play a big part with CM. Please know you can ask us anything and you will get an honest caring answer. We have all been where you are. I also struggle for words. They call it Word Salad....you know they are there but you can't reach them. Please ask all the questions you have. We have others from the UK that may be able to help you with specific Dr. questions. Know we are here for you day and night. No question is stupid or gross. Don't be afraid....You have friends now that will be with you through the good and bad. No matter what.