She had petit mal epilepsy when she was a child, but outgrew them until 2010. Since 2010, she would have grand mal seizures every few days, but since I entered her life they have dramatically reduced to one every few months. The petty mal seizures are still strong, occurring a couple times a week to every few days. She also has severe memory problems. It has progressed rapidly in the past three years. She has been on multiple medicinal regimes to no avail as she is allergic to most of the medication or the side affects have been grotesque. It seems surgery is the only option.
We are looking for any information on how we can get financial help to pay for medical bills that definitely will begin to stack once we start the process of getting her through surgery.
I plan to dive into a career immediately after graduation in order to help pay for the treatment, but she is motivated to finish school as well. She has not been able to successfully complete a semester yet due to her symptoms.
We are also looking for information on what she can do. We do not have finances to visit doctors regularly, but need to know what our options are.
We do not want her youth or her life stolen from her. What can we do?
Thank u on behalf of ALL Chiarians that do not have the support that u r showing to ur partner...we all need someone to be an advocate or a shoulder to lean on, and not all of us have that, so thanks.
Next, as Molly mentioned above, many clinics will work with u, and there are clinical trials that are being done that is of no cost if she is accepted into the trials....we do have a link to the trials here....http://www.medhelp.org/posts/Chiari-Malformation/clinical-trials-are-recruiting-now-/show/706710
That may be right now, but I know we have had members qualify for a trial...so keep checking for a new one to begin.
Keep in mind the link I gave is for an older trial....do look for current ones....NIH is in MD...so she would have to travel....I am not aware of neone in AZ that may be of help....the closest is Dr Oro in CO....but I do not know what financial help he offers....
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