Urgent Moyamoya Testing

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Urgent Moyamoya Testing

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*** Results from Kels trip.**** Thank you to everyone for your thoughts prayers and support for my trip to Stanford. There has been progression on the Moyamoya on my right side, but this is the normal progression of the disease and does not require additional surgery. There is no evidence of it appearing on my left side. My graft is still patent and provides between 60-70% of the blood flow needed. As relieved as I am about not having to face another surgery, I still have to deal with the symptoms I have been having. Dr. Steinberg feels that my blood pressure is too low and needs to be higher to support increased blood flow to my brain. There was also evidence of a small stroke since my last tests in 2012. He is giving me medication to increase my BP to see if that helps my symptoms. I will be monitoring my BP every day and checking in with his office every week. Thank you again for all your support as I continue to fight my Moyamoya battle! ***& Original post**** As many of you know, Kel was diagnosed with Moyamoya in 2011. She traveled to California to have surgery at Stanford.  Unfortunately over the last few months her symptoms have been returning.  She had an MRA in April which showed some questionable findings.  After Dr. Steinberg  reviewed her MRA, they decided she needed to have an angiogram and Diamox MRA. Dr Steinberg wants her to have the angiogram in California so he can do the artery markings in case she needs surgery again.  This trip to California is unexpected and the expenses include flights, hotel and a rental car for Kel and her mom. As well as the out of pocket medical costs. I broke my hip this year and needed a hip replacement.  That took a lot of our Health savings.  We appreciate any support and covet your prayers.

Organizer

John Oechslin
Organizer
Leola, PA
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