Elaine Posted August 11, 2005 Share Posted August 11, 2005 My lc family, I am so sorry I have been "gone" for a few weeks again. I am still having trouble adjusting to all the uncertainty I face--and I know that all of you face it, too. I keep having test after test to find out why if I am NED, I still feel so rotten and have so much pain. And then here is the worst part. My dear, dear daughter has been dxed with a brain tumor. It is called an acoustic nueroma and is apparently benign, but it has been a couple of bad weeks to get to this point of knowing. I am still in shock and unsteady on my feet. Last week we were told it was a cyst. This morning, a tumor and not until a few hours later did we understand that it is most likely benign. I am on my way to be with her. She is miles away from any family and went through all the tests alone because she was taken to ER two weeks ago and didn't call us until she got home the next day. The following week she had an MRI and we were told it was a arachnoid cyst and not to worry. Then today she was called in to do more tests (another MRI and a CT) because several Drs had looked at her MRI and thought more testing needed to be done. The doctors there scared her so badly--and thank goodness they sent her to a University hospital this afternoon where she met with a neurosurgeon, a nuero-oncologist, a rad onc, and a nuerologist who seem to be on the ball. She will have some kind of radio-surgery called Precision 2000 within the next week or so, assuming that is what she chooses to do. She could also do a wait and see approach. It's all very confusing to me, right now and I would appreciate your prayers. love and fortitude elaine Here is a link--I would appreciate if anyone has any first hand knowldege. http://www.uihealthcare.com/depts/med/r ... capel.html Quote Link to comment Share on other sites More sharing options...
Leslie221 Posted August 11, 2005 Share Posted August 11, 2005 (((Elaine))) Why does so much fall on one family? Not fair, not fair at all. So glad your daughter's tumor is benign. Hope both of you will enjoy happier days very soon. Love and fortitude right back at you! Leslie Quote Link to comment Share on other sites More sharing options...
shirleyb Posted August 11, 2005 Share Posted August 11, 2005 Girl.....you have a lot on your plate right now. Prayers being said for both you and your daughter. shirleyb Quote Link to comment Share on other sites More sharing options...
Ry Posted August 11, 2005 Share Posted August 11, 2005 I am glad things are going well for your daughter -- now we need to work on you. Glad to see you back Elaine. Quote Link to comment Share on other sites More sharing options...
gail p-m Posted August 11, 2005 Share Posted August 11, 2005 Elaine-- You've certainly had enough on your plate. So glad your daughter's tumor appears to be benign. Hopefully, they can get on with the business of successfully removing it now --- and then you can get back to worrying only about yourself, which is more than enough when you deal with lc. There is nothing, nothing worse than having a sick child! I know that from personal experience. Prayers for you and your daughter. Gail p-m Quote Link to comment Share on other sites More sharing options...
Addie Posted August 11, 2005 Share Posted August 11, 2005 E.... I'm so sorry to hear about your daughter...and also that you are still in such pain. I'm out the door soon for an MRI...but had to drop in to say I'm sending your family my very best wishes and vibes for answers, resolutions, fixes to all that needs fixing!! Stay strong...as I know you can and will...and know you have the collective backing of everyone here to provide a little wind 'neath your wings, for as long as you need it! More later... Quote Link to comment Share on other sites More sharing options...
Kasey Posted August 11, 2005 Share Posted August 11, 2005 Dear Elaine, So sorry about these past few bad weeks. Hopefully your daughter will be on the mend soon and will be feeling better. So glad the tumor is benign! God is good! I will be keeping you both close in thought and prayer. NED is a good thing, BUT would be better to feel good with little to no pain, huh? I will be hopeful that happens for you. I love your sign off, so I will steal it for now. Love and fortitude to you!!!! Kasey Quote Link to comment Share on other sites More sharing options...
Ann Posted August 11, 2005 Share Posted August 11, 2005 Elaine, I have missed you so much! I am sorry to hear about your daughter and I know how very worried you must be. I'm saying prayers that everything goes well for both of you. Take care of yourself through all of this and please keep us posted. Quote Link to comment Share on other sites More sharing options...
daggiesmom Posted August 11, 2005 Share Posted August 11, 2005 I'm so sorry your daughter is being put thru this. You certainly have too much to deal with. I'll pray for a good outcome for BOTH of you. I'm with you. Joanie Quote Link to comment Share on other sites More sharing options...
Nancy B Posted August 11, 2005 Share Posted August 11, 2005 Hi Elaine, My husband had an acoustic neuroma 20 years ago. It was a benign tumor, but he ignored the symptoms for a long time (he doesn't like doctors) so it grew quite large. The tumor destroyed his hearing nerve and his facial nerve. They did say that if he had waited much longer it could have gotten to his brain stem (not good). However, he did have the surgery (quite invasive) and is doing just fine today (he is deaf in his left ear). Best wishes to both of you, Nancy B Quote Link to comment Share on other sites More sharing options...
SDianneB Posted August 11, 2005 Share Posted August 11, 2005 Oh, Elaine, bless your heart. Like we all need such things in our lives anyway, and on top of all the other stuff? Bah humbug. You have my best wishes and prayers for both you and your daughter, and all of you for that matter. I'm sorry you have so many battles right now. Di Quote Link to comment Share on other sites More sharing options...
Andrea Posted August 11, 2005 Share Posted August 11, 2005 Elaine, My close friend's sister had that tumor like 5 years ago, she had surgery at Sloan Kettering in NY and she is just 100% fine now! I wish the same for your daugther Quote Link to comment Share on other sites More sharing options...
Fay A. Posted August 11, 2005 Share Posted August 11, 2005 Elaine, This is incredible, following your son's Steven's Johnson episode, and your own health problems. I empathize. Quote Link to comment Share on other sites More sharing options...
Don Wood Posted August 11, 2005 Share Posted August 11, 2005 Elaine, prayers for you and your daughter. Don Quote Link to comment Share on other sites More sharing options...
Treebywater Posted August 11, 2005 Share Posted August 11, 2005 Elaine, I am SO praying! Quote Link to comment Share on other sites More sharing options...
elnodel Posted August 11, 2005 Share Posted August 11, 2005 Dear Elaine, I am SO sorry that all this is happening to you, who didn't need anything more, right? But the good news is really good,and I know that they do wonders with brain surgery. My niece had exactly the same thing when she was 15, recovered in no time flat, and now is the happy mother of a bumptious 11 year old, (I think she's happy -- that is when Zach is behaving himself!). Keep in touch and feel better yourself. You know you have all our love, and you have fortitude aplenty to go around! Ellen Quote Link to comment Share on other sites More sharing options...
dadstimeon Posted August 11, 2005 Share Posted August 11, 2005 Hope things turn around for you Elaine, you certainly deserve it. My thoughts and prayers are with you. Rich Quote Link to comment Share on other sites More sharing options...
Lisa O Posted August 11, 2005 Share Posted August 11, 2005 Dear Elaine, I am sending prayers for your family. Nothing is harder than worrying about our children. Take it easy. Lisa Quote Link to comment Share on other sites More sharing options...
Maryanne Posted August 11, 2005 Share Posted August 11, 2005 Oh Elaine, Iam so sorry for all you have been going through. You definetely need some peace of mind. You will feel much better once you are physically with your daughter. Prayers sent to both of you. I am so sorry you are going through such a bad couple of weeks. I pray it will get better for your both. Maryanne Quote Link to comment Share on other sites More sharing options...
Nushka Posted August 12, 2005 Share Posted August 12, 2005 Elaine, I think about you quite often and had wondered how you were really doing. This explains it all. When our children are sick we can't help but be very upset. Top that with the way you feel etc and you've got some real anxiety. Keeping you in my prayers and hoping to hear good news from your daughter soon. Nina Quote Link to comment Share on other sites More sharing options...
shineladysue Posted August 12, 2005 Share Posted August 12, 2005 Elaine, Want you to know that my thoughts and prayers are with you. Praying everything turns out ok for you and your family. Love and Prayers, Sue Quote Link to comment Share on other sites More sharing options...
Melinda Posted August 13, 2005 Share Posted August 13, 2005 Elaine, This is the first time I have logged on in months--I am so sorry to see all that you have been going through! If it helps, one of my best friends from high school was diagnosed with a huge brain tumor while she was in college. Long story short: they removed it and she is perfectly fine (she has lost a little feeling on the left side of her face--like if she has a tiny crumb on her cheek, she won't feel it--but that's it!). Our thoughts and prayers are headed to both you and your daughter. Melinda (& Geoff) Quote Link to comment Share on other sites More sharing options...
Tiny Posted August 13, 2005 Share Posted August 13, 2005 Elaine- So sorry for the very tough times your family is experiencing. Sending you and yours prayers. Quote Link to comment Share on other sites More sharing options...
annjael Posted August 14, 2005 Share Posted August 14, 2005 Prayers for you and your daughter for strength, and for answers. Peace, Annjael Quote Link to comment Share on other sites More sharing options...
Don M Posted August 14, 2005 Share Posted August 14, 2005 Elaine: you and your daughter have my prayers. Don M Quote Link to comment Share on other sites More sharing options...
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