Hi,
I am very sorry to hear about your daughter. It sounds like you both have been living with so much all these years. To me, just someone who has lived through this myself, it does sound like symptoms of the cyst. As far as finding someone that does believe that brain cysts can cause these problems, it does take some work and effort....sending copies of her records and a summary of what all has been going on with her over the years. Neurosurgeons, to me, are the best ones to approach on these matters. Neurologists are not as familiar with, in mine, my father's, and many other people's opinions. Neurosurgeons have more training in, and more information on brain cysts. If you are willing to look outside your area for help, search neurosurgeons for surrounding areas and states. Pull them and the hospitals they are on-staff with up online and research them. You can talk to the office manager of the group and get their feedback on which doctor in their group more deals with arachnoid cysts. Many times, the chief neurosurgeon is the more well-rounded doctor who deals with an array of problems, but not always. If it were me, that is the route I'd go. I would just start tackling the different facilities in the surrounding area and find neurosurgery groups and contact them. It may take sending her records to several doctors, but surely someone will be willing to see her and know enough about these cysts to help get you pointed in the right direction.
The symptoms you describe for her....many are of what I dealt with, so it's hard for me to sit here and think that the cyst isn't the culprit. I hope you can find someone to help her. Don't give up. It would be amazing if she could get to live life more normally and know what it feels like to have days where she doesn't have to live with at least (so many) of these symptoms.
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Hi,
I am very sorry to hear about your daughter. It sounds like you both have been living with so much all these years. To me, just someone who has lived through this myself, it does sound like symptoms of the cyst. As far as finding someone that does believe that brain cysts can cause these problems, it does take some work and effort....sending copies of her records and a summary of what all has been going on with her over the years. Neurosurgeons, to me, are the best ones to approach on these matters. Neurologists are not as familiar with, in mine, my father's, and many other people's opinions. Neurosurgeons have more training in, and more information on brain cysts. If you are willing to look outside your area for help, search neurosurgeons for surrounding areas and states. Pull them and the hospitals they are on-staff with up online and research them. You can talk to the office manager of the group and get their feedback on which doctor in their group more deals with arachnoid cysts. Many times, the chief neurosurgeon is the more well-rounded doctor who deals with an array of problems, but not always. If it were me, that is the route I'd go. I would just start tackling the different facilities in the surrounding area and find neurosurgery groups and contact them. It may take sending her records to several doctors, but surely someone will be willing to see her and know enough about these cysts to help get you pointed in the right direction.
The symptoms you describe for her....many are of what I dealt with, so it's hard for me to sit here and think that the cyst isn't the culprit. I hope you can find someone to help her. Don't give up. It would be amazing if she could get to live life more normally and know what it feels like to have days where she doesn't have to live with at least (so many) of these symptoms.
Keep us posted and good luck!
August 19, 2010 - 3:39amMaria
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