The concern was over Ms. Cash's written comments not her interview comments.
I am very happy with the smallest positive comment any Chiarian has to say or that they feel well or have had a good outcome from their surgeries. I cheer anyone on or offer comfort when needed in a not so positive situation.
I would never wish anyone had a bad CM situation and suffer as many do including myself. That to me is very hurtful that anyone would think I would wish anything negative on anyone especially Chiari. I wouldn't want anyone to have to live like I do ever and most of you know me well enough to know that is true beyond a shadow of a doubt.
The problem is the word "Cured." Anyone does have the option to describe themselves however they want, but I would also tell them they were wrong if they described themselves as post surgically CM Cured.
Most Chiarians that have Decompression surgery no longer has a herniation.
A Chiari Malformation Cure would mean a Medical Researcher found a genomic process to halt the congental malformation in the gestational process. That is a Cure.
Surgery is a treatment for the malformation.
Ms Cash's comments were not placed on this Forum by herself. They were taken of another venue where she was not commenting to us specifically. I would personally like to be able to read all the comments and am sorry she has to feel like she has to defend herself, but she chose to say, "she and her NS considered her CM Cured."
When one works as hard as some of us for CM purposes and to advance understanding and knowledge about CM, surely you can understand why that comment would be so controversial.
Even if the CM Decompression is successful Medical Research proves it is not a cure but used as a management tool. No where in any data is the word Cure associated with Chiari surgery or the outcome......... Just Management.
http://www.hindawi.com/journals/ijpedi/2012/640127/
http://www.patient.co.uk/doctor/chiari-malformations
http://www.surgicalneurologyint.com/article.asp?issn=2152-7806;year=2012;volume=3;issue=4;spage=232;epage=237;aulast=Baisden
http://jnnp.bmj.com/content/73/suppl_1/i34.full
http://www.conquerchiari.org/ccresearch/Documents/Conference%20Booklet(web).pdf - Amazing Data- Every Chiarian Should Read.
http://www.columbianeurosurgery.org/conditions/chiari-malformation/
I could continue with 100's of like articles, studies, reviews, white papers.
I wish more than anyone Chiari could and would be cured and believe one day it will be...just not today. I fight for it daily on one avenue or another. At this time it's not possible. No matter what some people chose to say or think. It doesn't change the science or the people being destroyed daily by just getting a CM diagnosis or trying to get a diagnosis. It definitely doesn't help CM Advocates who only want to help others with CM and bring correct awareness to CM, when a famous person claims to be cured.
Does anyone not realize my frustration? Yes one word can cause this much chaos. I am sure Ms. Cash is sorry she ever said the word cured. Later she said she chose the word not her NS.
The concept that Chiarians are upset because they aren't doing as well post surgically is not fair to anyone that had a difficult CM situation. I have a horrible post surgical situation but why would I or anyone be unhappy for someone that had a positive post surgical situation? Every Chiarian I know wants others to do better than they have post surgically. There is no malice involved, to have those feelings are selfish and hurtful. Most Chiarians have enough hurt in their daily life and would never wish that on anyone.
I am really disappointed & feel unfairly judged. I challenge everyone to truly get involved and research and ask questions before you make statements that hurt peoples feelings.
Tracy Z.