Hi everyone. I was diagnosed with chiari malformation type I, a couple of months ago. It amazes me how uncommon this condition is. You are more likely to meet someone who has battled cancer.
I have the common skull surgery in december, and my biggest question is how is life after surgery? Is there a lot of pain? Are there any natural remedies that ease with the instability?
I know my quality of life will be different. But I still hope to travel the world and work abroad. I do not want this to be something that I have to worry about.
A little about my symptoms. I am 23 years old. I just noticed my symptoms this past year. My MRI is very abnormal. As you all know, the spinal fluid should show grey not white. My whole spine is white meaning the flow is very abnormal. My symptoms are difficulty swallowing, shortness of breath, and muscle weakness especially in my left hand and instability. It's like being drunk. Thankfully no headaches or pain.
I am happy to have found a support group. I am thankful for the positive support and strength of my family, but I find it worthwhile to talk to people who have experienced this themselves.
Looking forward to hearing your stories.
I have tried no other ones. I was in physical therapy because we initially thought it was ulnar neuropathy. Unfortunately MRI revealed otherwise.
I think the instability is definitely annoying. And my muscle weakness. I found a great neurosurgeon who does this operation 2-3 times a month. I trust his opinion on doing the surgery. We had a second opinion who also supported that be the first measure, but said there is a 50/50 chance of getting a surgery involving a 'shunt'
Overall, I do not want my symptoms to worsen or other symptoms to appear. Don't get me wrong some days I just want to stay in bed and not go to school for hours but when Im interacting with other people and doing other things, the symptoms seem to be more mellow.
I do bump into things, but I also have been going to the gym, lifting weights and going on the treadmill.
It's weird that this a pediatric condition that we are born with, but only now symptoms are showing. I think what makes me more emotional is the uncertainty of my future, I feel like everything that I want to do is questionable now, like will i get medical clearance for it.
I think that's why I joined, I went on youtube and saw the comments. It was so sad, all these people, even younger than you and I dealing with so much more pain. Some commented that the surgery was not a cure, and symptoms will still show later on, only time will tell.
Anywho, Ive learned being positive in a situation like this is the only thing i can control. No one likes a debbie downer, and I sometimes will cry out of nowhere just thinking of having this and curse at the world. But i feel like everything happens for a reason. Hopefully I'll come out better and stronger in the end.