pain

[missy]

okay i am trying to find a site that is understanding ,truthful ,and not snippy i was just on a site called asap i felt that i hadn't said nothing wrong but i felt like i was under investigation for what reason i don't know i an't no criminal , any way i would like to intro duce my self i am 45 years old ,married have 3 children 11 ,21,25 my 21 year old is in the navy and hope to become a police officer with the help of other friends who work in the police dept. my husband is a nurse and i was working in hospice before my decompression surgery ,i have some questions maybe i can get a well better answer on this site , in sept of 2001 i was diagnois with chiari 2 and at that time i didn't know of syringomyelia,i had no computer for searching material, after surgery of the c5-c6 area and in 2003 i was given and mri and it showed c2-t1 syringomyelia i was thinking maybe my chiari had grew? now 2006 when i go through all my paper work no more mention of chiari 2 it just chiari and syringomyelia was there a paper error ?, i was also told that i was born with this but my mother died when i was six years old and my father died april of 2001 and i had surgery nov 2001 so there was no way of finding out, i had a subiccipal crainectomy decompression, c/l ,i have 7inch cut back of head and neck ,i take 75mgs of duragesic patch for pain , norco for breakthrough pain ,lexapro for depression ,and other medication. question 1 was there a paper error or did the doctor forget i had two doctors one neuro surgeon the other neurologists Question 2 was there a cause that i was being snippy on asap .org under earlene or someone didn't know how to read what was ask? and 3. dose chiari grow?or dose syringomyelia grow ? thank you my name is earlene but my family and friends call me missy:confused: :confused: :confused: :confused:

[krashleen]

Hi Missy, welcome to BT...I belong to ASAP too, and I don't know why someone was snippy to you..when someone is in chronic pain sometimes people can and do get snippy. No reason to take it out on you though.

Paperwork can not always accurately reflect what your condition is, especially if there is a lack of knowledge. Chiari 2 is much more rare than Chiari 1. I don't know how they made that call on your records.

I think most of us are on heavy duty pain meds, to get us through the day.

I just want to say welcome..and sorry that things didn't go well at ASAP.

[missy]

thank you also , hey i live in indianapolis last night i saw a show on about chiari that comes on tv every tuesday night its called 3lbs, i was so glad to see this program, its very education join in and watch it its call 3pounds

[LIZARD]

thank you also , hey i live in indianapolis last night i saw a show on about chiari that comes on tv every tuesday night its called 3lbs, i was so glad to see this program, its very education join in and watch it its call 3pounds

I watched it. :) Last night's show was not about ACM. It was about a teenage violinist who suddenly had a sz during a concert and was found to have a brain tumor. Quite good. :) I think I'll keep watching.


LIZARD :)

[razzle51]

hey Missy who was snippy ? email me if you would like remmel50@netins.net , put chiari in subject line . I will go back and read those posts . Hope to hear from you . Have a dear friend in IN that might be able to help you. Roz

[missy]

i do believe that they said malformation but i will keep watching because i enjoyed the show

[missy]

please keep in mind what ever is revealed will not go uncovered it aways remain open

[razzle51]

????? What Do You Mean

[Mayzoo]

I know my daughter was diagnosed with ACM I in '04--then someone misread a report over the phone to me, and told me in '06 she had ACM II. Even after I questioned him he stated it was ACM II. Where the confusion came in I found is on the report it stated "CHIARI I" Since the "I" in chiari, and the roman numeral "I" were close together, it was read to me as Chiari II. That is my best quess as to how you may have been told ACM II to start with, and then told ACM I later.

I can tell you that unless you have spina bifida, spina bifida occult OR if part of your brain stem distends into the spinal canal along with the tonsils, you have ACM I. I have NEVER heard or read any other scenerio of ACM being classed as a ACM II. And, I have been told ACM I or ACM II do not evolve from one class to another. I did a lot of research on this after I was told that my daughter's condition had "evolved" into ACM II.

[razzle51]

Missy that post has been locked where you were registerEd and unregistered . Come back and reregister and we can try to help you at ASAP.