Carries Chiari Connection

Here is a letter sent in to me and asked that I put it on my website:

carrie , i'm so happy to hear from you!! i live in lakeworth , right outside west palm beach. i read every blog and diary you wrote.as far as my sleeping issues i have to sleep in the bed or i'm in so much pain it's unbearable! rt. now i'm only on phenergan for nausea and atevan for seizures. i had a stroke in sept.08 .i see dr.bologenese in new york since march 08, first dr. in cinci was unable to help me after 3 brain surg. apparently he just did not know enough not surprising. had decompression on 9/17/07,csf leak repair on oct. 07,wire in head to measure pressure on 11/28/07 dr. in cinci then said i should seek psychiatric help,there was nothing wrong w/me!!! then isaw julie carters family on extreme makeover in oct.07 and recorded it . carrie i watched it everyday until feb. 08 got sick again ,got sent to er had a seizure and my 16 yearold daughter found me out on the floor for the 50th time had a questionable stroke then and another csf leak in my head. so i being the stubborn XXXX XXXX XXXX that i am lol called 411 and got the number 4 julie carter in billings montana and she helped me to get to new york.
On march 10 ,08 i had decompression revision and another csf leak repair! found out i also had a tethered spinal cord. so 10/24/08 i had detethering surg . and a test called invasive cervical traction ; a bar screwed into my head then hooked up to traction and weights put on to see how much it took to pull my head up [brain and skull out of spinal canal] took 45 lbs. good grief!!! so then they dr. b. said i needed to be rodded and fused perfect lol. so i finally got back to cinci by airplane and i got another CSFleak in my lower back where i just had spinalcord surg. so back to NY again i hate that place , i'd rather go to bora bora lol. on 10/24/08 csf leak repair. is it even legal to be cut on from your head to your butt ? lol!!!!!!!! still no better, unbeleiveable. i dont work i'm on s.s. and my husband works very hard. so i'm no pro just very XXXXXX!!!!!! and thats what keeps me w/an attitude like i have , that and the fact that i'm not ready to leave this world not yet and not because i didn't put up a fight!!!!!!!!!!!!!!!!!!!!!!!!i have too much i have not done and too much i want too experience. do you have a tethered cord, syrinx,eds ? i believe my syrinx is growing again and that sucks. my 88 yr. old gram says one day at atime and this is the day the lord has made , doesn't fix things but it helps get me through. and at this point i'll take any props.feel free to post this letter on your beatiful beautiful website vry impressive . look forward to hearing from you again real soon , after all we need all the backup we can get!!!!!

honestly krazy kat