There are many symptoms associated with this condition that many are unaware of.
A lot of these symptoms make it hard for people with Chiari to live a normal life. Sometimes, even the simplest tasks are very difficult. Some of us are worse than others. Sometimes, Chiari Malformation is found by accident when looking for another issue. Some people have no symptoms while others have multiple or all of them. We are constantly faced with some issue when it comes to doing things. Chiarians are either unable to do it period or know that if they do, they will be paying for it later. It is potentially a very disabling thing.
There are too many people, especially doctors, out there who know nothing about it or haven't even heard of it. Awareness is so important. If more people were knowledgeable, maybe we would be treated correctly or not be told that there is nothing wrong with us.
Those of us who face Syringomyelia as well, can have even more symptoms to deal with on a daily basis. This condition and Chiari Malformation, a lot of times, go hand in hand.
Very interesting to read about Syringomyelia. I did not know what it was. I do read a lot of what you post and I'm glad you do this. It's good for people to learn about this devastating condition/s you have. I just wish all of the doctors knew more! I can't even find a good doctor for my Fibro. Keep posting woman :)
ReplyDeleteThanks. I'm trying really hard to get it out there. I have started writing people that people might listen to in hopes that they will help. I'm going to try to write the newspaper here and at home.
ReplyDeleteKeep posting this info!! Glad u are doing this!! It helps to read all this and know and understand wat my daughter is facing!! Thank u!
ReplyDeleteNo problem. This was my first way to get my emotions out. I never imagined that I would have over 800 views. I've been slacking the last couple months since I have had so much going on, but I'm slowly getting back to it. Thank you for the taking the time to read it.
DeleteMy daughter has Chiari and she has had 8 surgeries. She had a lot of complications with one surgery after another. One surgery caused a stroke. It was unbeleivable, the pain and anxitey she went through in a short period of time. She is almost 6 years passed her last surgery and she has constant headache pain. She has had this pain for over 7 years. Our family doctor thinks she would benefit from medicinal marijuana, however our state has not passed it yet. We are close. I pray for the day that her pain and the pain of so many other Chiarians is relieved.
ReplyDeleteThank you for sharing :)
I'm sorry to hear about your daughter Evie. That's what I feel my life is going to be like. Before the surgery, I was in pain. I thought it was a lot then, but once I had the surgery, everything changed. 4 days post op, I went completely numb. I have had so many other problems pop up, been from doctor to doctor, and on medicine to medicine. I hate it. I am currently waiting to see a new neurosurgeon. The one who did my surgery pretty much doesn't even want to see me. I was hospitalized a couple times, and in the reports, they questioned whether I had some sort of small stroke. Did they do anything? NO! It is horrible that we have to go through all of this and explain to medical professionals what we have and what our surgery consisted of. I have issues with physical activities, but I will be participating in the Unite@Nite walk to raise money for research. We all need it badly!
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