Elaine Posted November 17, 2005 Share Posted November 17, 2005 Hello my dear friends I just looked and I have not posted since the middle of August. I am so sorry. I have checked in maybe once a week and I see so many new names that I feel overwhelmed. I do want you all to know that each of you is in my heart each day. It is hard for me to be brief as many of you know.. but I do think I owe an update. Last time I posted I was on my way to Iowa City to be with my 26 year old daughter who had called that day having been dxed with a brain mass. The phone call I got from my daugher that morning was one of the most devasting moments I have had... and I have had a few... By that afternoon, she told me that the second Dr she saw that day had been told it was benign--an acoustic nueroma. Well, when I got there, I found out the truth. The Dr. THOUGHT it was an acoustic nueroma but could not be certain. My little girl was trying to protect me....how horrible I felt about that... I was there for 10 days, and she had another MRI that showed no change. Her team of Drs. thought that waiting 8-10 weeks and doing another MRI would be better than her doing gamma knife or a biopsy. But it was her choice. She chose to wait. I consulted with my neurologist who said that would be his suggestion also. However, when I finally pressed my daughter's Dr. into explaining to me why anyone had even done an MRI on my daughter to begin with, I found out that instead of passing out that night, there were several indications that she had in fact, had a seizure. Blood work and the "deep sleep" she was found in. Well, an acoustic nueromas the size of a pea (or any size, usually) do not cause seizures. However another a brain tumor called an astrocytoma do, which is what they were hopefully going to rule out--eventually. These tumors spread throughout the brain's lining. Sometimes causing symptoms when they are too small to be seen. (The last two sentences I wrote, I never told my daugher). SHe was relieved to not have to do anything about it ...for those 2 months. I, on the other hand, freaked out inside. Of course I was strong when with her..but ... When I got back home, the anniversary of my own mother's death at age 30 arrived on the 31 of August. I broke down. It was a long and painful wait for her MRI. Her Boyfriend broke up with her, the week after I left. They had been together for 4 years... and she basically supported him through his first two years of law school... what a jerk However, that was a blessing in disguise for several reasons.. one .. it was good to know he was a jerk now.. rather than later.. and the other that my daughter did not focus soley on the what ifs of her condition. I got to be the one to do that. As a matter of fact, she barely mentioned it. Finally. three weeks ago, she had a MRI... and no change.. so they will not do an MRi for 6 months. I still feel unsettled in my mind about it. So I can't even think that for sure she is all right... but I can tell you that we are so thankful for the news we got that day. To let you know something about my daughter. I am scoring SATs on line. Her MRI was to be during one of the 10 day periods when I work. I could not get her to change the appointment. She did not want me to come. Well, I wasn't going to..but.. that day..I woke up and decided to drive to her.. I knew I could not get there for the appointment..but I could be there pretty close to when she would be done.. I made it an hour before she got home with the good news. Of course she was surprised to see me.. But what surprised me.. is that she had made a first date with a guy for 5 PM that evening. Is that confidence or what? She knew the earliest she would be done at nuerologist would be 3.. and still she made a date.. Ok my news. I had an MRI of spine and and brain a week before my daughter had her last MRI. All clear. CT of chest.. all clear. My counselor who did her best to get me through those 8 weeks, is also trying to help me get on with my life ( which would be great if I had a job).. but..I am doing much better. Oh also I had a bone scan in August that showed my HPOA was about the same. No one knows why I have it and that it has not disappeared.. but a wonderful pain management Dr. added Cymbalta to my nuerontin and I am in so much better shape... hard for me to believe it. I can't say I am pain free.. but.I can almost forget the pain most days. The bad part is that in trying to get on with my life... I have not followed up with my nasty pulmo and I need to becasue everyone keeps telling me that maybe some of my problems are caused by my sleep apnea .. Oh, I have the funniest story ever about the second half of my sleep study.. but.. sorry this is already so long. I am also due for more tests before Christmas and before I run out of money to pay my COBRA. I continue to feel the prayers that so many of you keep sending. I send them back each morining and night. along with love and fortitude elaine Quote Link to comment Share on other sites More sharing options...
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