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09-21-2010, 06:09 PM | #1 | ||
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You need to contact Dr. Rudolph Schrot at UC Davis in Sacremnto California, he's the expert on the west coast. I had a 6cm removed now have 3 in sacrum and 9 thoracic. If you have any questions I can help been down this road. A cyst that large can leak and or burst. Not trying to scare you just want you to understand this is the largest I've ever heard of. I have been living Tarlov Cyst for 10 plus years since my first large one was found. Most neuro surgeons will not touch or operate. Dr. Schrot will.. Nancy
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09-24-2010, 11:31 AM | #2 | ||
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Junior Member
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Thanks Nancy. Im in Ireland and am scheduled to meet with my potential surgeon on Tuesday next. I have met with Dr Donlin Long this past March and feel that I am safer to undertake the surgery at home of at all possible. Two main reasons being here I am covered by insurance where as to travel to the USA would be a cost my family could not afford without undertaking fundraising; Secondly, in respect of long term aftercare, should anything go wrong when I return home, no surgeon will interfere with the work of another so it would mean more cost of returning to the USA.
I would be grateful to hear of your outcome from your surgery however. Dr Schrot is a new name to me in my research. Do you have an underlying condition causing your TC or do you know why it happened? I have a very rare Connective Tissue Disorder which I believe is the cause of mine. Thanks Rachel |
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