I'm new here, and have technically been diagnosed with Chiari for several years now, but didn't start having symptoms that significantly impacted my life until recently. I’m currently in the process of seeing a NL and NS. Because I’m a researcher and thinker I’m already trying to find a lot of information on the great surgery debate because I want to be prepared to discuss things earlier rather than later. My general thoughts on the surgery issue is that it seems like many of the cases that are unsuccessful at seeing significant symptom reduction are so because they either have other complicating factors or the damage was already done (or perhaps both). Obviously this surgery is a ginormous deal and is in no way something I just want to jump into, but from what I know now, it seems like doing surgery sooner rather than later might be a good choice.
Does anyone know if there is any information out there about how often symptoms progress for people? Looking back, I can certainly say I’ve had some symptoms as a teenager (I’m 23 now) and it has definitely been getting worse and occurring more frequently (I’m experiencing the ebb and flow bit with most of my issues). So, while things are manageable now and I wouldn’t say hey I can’t handle this, I need surgery, I don’t want to wait around and then get to the point where I DO need surgery and then have it not be effective because I’ve done permanent damage. Any one else gone through this thought process??
Plus, through the end of the year my family has met their catastrophic so everything would be completely FREE. On the downside, my hubby and I just moved to CA and all of my family is in GA and I really don’t know that I could do it without them….
I've definitely been through that thought process!
I am so sorry you have to deal with this with your family so far away.
I am 22, and will be 23 later this month. Last week when I was the NS he said I really do not have the option of waiting to do my surgery, that it was not a choice to ensure that I do not have permanent damage to my nervous system.
I had symptoms as a teenager, but they did not find my Chiari until about 3 weeks ago.
I know that as young as we are it's hard to think about something as life changing as this kind of surgery. You'll have to weigh the strength of the symptoms against the possibility of having the surgery where you might end up better against the odds of something happening.
My family and I decided that it's best for me to have my surgery as soon as possible to prevent the permanent damage. I've been able to figure out that's what works for me. Not everyone is the same. It's so hard to make this decision for yourself, I was relieved when the NS made it sound like I really didn't have an option to wait, it made it easier for me to say "go ahead".
I will praying and thinking about you. *HUG* I hope you are able to make the best decision for you. GOD BLESS!
Thanks Katrina, it's good to hear from someone around the same age and in a similar situation. Do you have a date yet?? Keep me updated on how it goes.
It was nice to meet someone else in the same position too!! It's hard to think about surgery at our age with so life before us.
I'm hoping I"ll have a date Friday. I will keep you updated, I promise!
THANKS SO MUCH!!! Thoughts, prayers and best wishes to you too!!!
Katie B said:
Thanks Katrina, it's good to hear from someone around the same age and in a similar situation. Do you have a date yet?? Keep me updated on how it goes.
It's nice to hear a similar story! I'm 25 and was just diagnosed last week. I always knew I had the possibility of having Chiari because my father did. I feel the same way. I have very very mild symptoms and I keep wondering what happens if it gets bad? My dad was diagnosed at 38 (he had very severe symptoms by this point), had the decompression surgery and unfortunalty it hasn't really worked for him.
My first is appointment with a neurologist is this week and I am curious what they will say...