talking with my mom today and she asked me if chiari had anything to do with being born three months early ? I really don't have anyone to asked all these, what seems to be simple, questions to. I have so many but yet come up with no answer- my doctor doesn't know answers to many of the questions I ask. I don't have a reg day to day ns to contact- I wonder if I should have gone to a chiari specialist instead of the mayo clinic for my surgery etc- is there somewhere or someone I can just fire questions at and actually trust the responses??
I thank everyone on this site- everyone is very very supportive and that is just what I need- we all need! I have nothing but high respect for all who have come together here- I couldn't be in the frame of mind I am in without everyone here- you have all helped me tremendously! you are good for the sanity-
Lil, I have not heard of the connection of premature birth, that does not mean there isn’t one. I was not a premie. The only place I know of to fire off questions about Chiari is, well, this site! I’ve learned so much, so many “fun facts” here, so much more than from any doctor or even the surgeons.
I’m grateful for all the people and support here too.
yes my mother carried four other children to full term- when I am at my most down/frustrated/lost etc I come here- I feel this is where I have learned the most- also helped me prepare a bit for the recovery period after my surgery- tips that were great and I would never have thought of- one example a shower chair- loved it sooo happy I had it- but that's just one example-
it was a year ago on the 3rd of this month that i found out that cm even existed let alone learn what steps i was going to take going forward- in all the months that had past i never thought once about the awareness of chiari- i think i was just absorbing it all- this half of this month i have made the decision to make sept awareness month really mean something for those around me- i am sending via email to my family, friends and co workers to begin with, an awareness video that is very educational my sister found. i have purchased a few tee shirts and somethings for my car with cm ribbon etc- i just want to help get the word out- http://www.youtube.com/watch?v=50nI45Qn878 last year i didn't think much about after the surgery/recovery- i thought things would just go back to the way they should be- i have been changed forever!!! its time i stop being so quite about what i know now to be something very serious and complicated. that indeed it wasn't all in my head and people need to know about this!! and i need to talk about it...
again everyone here has been amazing and i will try to come here a lot more for the one of a kind support that's provided here.. THANK YOU
I do agree with you that the people here are so great they have taught me so much about chiari.If only I had found this site a long time ago,it is a lonely road to travel and it has been a long one for me,so many years without a diagnosis.The mental aspect is as bad as the sickness it’s self Dr.s who will not listen the symptoms are so many NSs just are over whelmed,if they don’t know they get defensive.In my case the mris were useless in finding my chiari and that seems to be the only tool used to diagnose by the mainstream docs.The herniation is not as significant as is thought by most NSs,mine was considered borderline but was very life altering.If
you don’t get a specialist you may not get any help from the reg.med.community their knowledge is limited in this field,I found out this the hard way 27 yrs.without theproper help.We are here to reach out and try to comfort each other,thank God for everyone who helps to teach and comfort