After reading about all the problems others are having, I am beginning to feel like I don't belong here. I have what I would characterize as "simple" symptoms. I have daily headaches (actually I think it's just one long one, not one every day) I have the blurred vision and constant ringing in the ears. Other than that, I feel fine. I am seeing how fortunate I am that I don't have the major symptoms that some of you are experiencing. Thanks for letting me tag along and learn more about Chiari. I am very ignorant about this condition and the problems that it can cause.
Regardless of symptoms or the severity you are still welcome here! We're at all levels and stages of chiari and all here for the same reason. Support :)
Steve's Girl
I fully understand your viewpoint, but please let me take a minute and share somethings with you ( a lot based on me and my hindsight). As you know Chiari treats all of us differently some good, some bad, and some well just terrible; but it is all Chiari.
I love hindsight too, but looking back, at my symptoms, and comparing them to others and what they had suffered, I was not near as bad, but then cam progression.
Looking back growing up I had eye floaters and headaches and ringing of my ears. Eye floaters I kinda thought were cool cause the 6 million dollar man was on TV and when I had then I thought I was bionic just like him, so it did not bother me. The headaches my parents and doctors were told about them and I was told I needed to get more sleep which could have had some truth to it considering I used to read novels (Treasure Island, 20,000 Leagues Under the Sea, The 3 Musketeers, etc) under my blankets with a flashlight until either I was caught, the batteries went dead or I finally went to sleep. Usually it was the first one, Mom was good.
My ringing in my ears, we were told it was because I did not use hearing protection when shooting or when around the shooting ranges, I did find out this would have caused temporary ringing but not what I was experiencing but again got used to it.
Then everything came crashing down in 2010 - 2012. Boy what problems with doctors insurance and everything else. I would not wish that on any one.
I guess in a long way what I am trying to say, is that even though your symptoms are not bad at this time, it may change, hopefully and prayerfully it doesn't. You are here with us, please stay with us. We can learn from you and I hope you can learn from us. We all have bad days (trust me, I am starting to get over one slowly, very slowly) and good days. Today seems to be a bad day in some parts, but over time and one of the many things I like about this site is that we grow together. We share experiences (good and bad), news, and more. We do what we can even if it is just to listen or say we understand because others don't understand.
It is ok to not have a great understanding of Chiari and the problems it causes. Many many doctors are the same way. I will personally help you with anything you want to learn and I am positive many others will do the same even if they do not comment on this specific thread. I am going to pick on Abby for a moment just because she was one of the first commenters and I saw her name first. I may have had an experience with Chiari that she has never had and that could be due to several reason (most likely cause I am very very bullheaded at times) and she is open and responsive to many things. Like if she is experiencing a bad headache like you described lasting days on end, she know what to do to ease her pain unlike me saying I am strong like bull, I will power my way through this and not do anything. For me not always the smart thing to do, but then maybe numbness effects us, I get a bad case of the dropsies and I have great concern cause my wife is due , well any day now, on Oct. 5 but Abby says it is ok that happens some times.
Yes I guess I am rambling again, but not only does Chiari effect us differently, we experience it differently. Our common thread is the Chiari and wanting to help each other and raise awareness. Please consider staying, you are more than welcome and we are glad to have you here with us. Let us learn and grow together and know that you will never be alone. As the old slogan for Motel 8, "we will leave the light on for you"; Here at chiarisupport.org "We will always be here to support you to the best of our ability without judgement"