Sorry for not updating sooner, just been through a long process.
I was being treated at one facility that was not comfortable doing a biopsy on my brainstem. So they were going to proceed with Chemo and Radiation. I was a little concerned moving forward not knowing what exactly we were dealing with.
I contacted Dr. Henry Friedman at Duke university on Dec 17th via email, he later contacted me by phone that evening and suggested that I not start treatment until he has seen my scans/MRI's. I overnighted all my scans and med records and the morning of Christmas eve he called and said that he had one of the best neurosurgeons in the world, Dr. Allan Friedman and they would be able to help me. I traveled from MO to NC for a consulation and then had a craniotomy on Feb 3rd. with Biopsy. He was only able to get enough tissue for biopsy as the tumor had infiltrated normal tissue.
The pathology reports have come back a little vague. So at this point they think the lesion is from an old infection or the start of an early tumor. So treatment at this time is to watch and wait and repeat the MRI in 6 Months and to start vestibular rehab to help with my symptoms. I will be traveling back to NC in about 3 weeks for my 6 week follow up from the craniotomy.
Recovery has been pretty good, I do have trouble walking now and numbness in my right leg, which are new sypmtoms after the craniotomy. I still have the symptoms I was having prior to the craniotomy which are blurry/dbl vision, Nausea vomiting, and Headache.
I am thrilled to have found Dr.Friedman since if I had followed the first treatment plan I would have undergone Chemo and radiation and at this point is unneccesary.
I am still in the recovery process and I feel very blessed. Hopefully this let others know that there are other doctors that are out there that can help not all surgeons are at the same skill levels as other. I appreciate my first Doctor telling me she was not comfortable biopsing the brain stem however I wish she would have tried to refer me to a more skilled surgeon instead of wanting to proced with chemo and radiaton.
I will keep you guys updated
Hope and prayers