ANA Discussion Forum
AN Community => AN Community => Topic started by: Justasis on November 15, 2006, 10:27:16 pm
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Hello everyone. I have never done this before and I hope I'm doing it right. I'm needing some support here and was hoping you guys could help me out. Please let me know if I'm being heard. Thanks!
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Got it! We are here. Post your concerns.
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You are coming through loud and clear and you have come to the right place if you have AN concerns and/or questions.
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Justasis,
We hear you, Are you there?? Don't be shy.
Patti UT
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Thanks for answering. I feel kind of awkward because I'm not a patient but a sister of a wonderful lady who was diagnosed a year ago and is going downhill quickly. We have a doctor appointment today and I should more know more today. I have a feeling after today's appointment I will need some support. We have no other family so I'm on my own and need some help and input on how to help my sister as much as possible Thanks for listening and say have us in your thoughts today.
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Hi Justasis:
Your sister's AN must be growing. I would think they will order another MRI if they did not already.
Good luck today and please let us know how the appointment goes. We are here for you and her.
Kathy
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Justasis,
It's great that you can help support your sister. One thing you can do is help be her advocate with the medical community. Sometimes it's hard for the patient to hear everything that's discussed by the doctors after they say something like, " You may need brain surgery". While your sister is getting used to what the doctors are saying, she may forget to ask questions that she had wanted to ask. You can help by being there to help write down everything that the doctors are telling you, and remembering to ask the questions that you both have thought about. Best of luck to you and your sister. She's lucky to have you around.
Regards,
Rob
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Justasis. You are doing a wonderful thing by supporting your sister. She will need you to get though this. Please let us know how the appointment goes today. We will be thinking of you both!
Laura
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I wish I had a sister like you! Please let us know how we can help you and your sister. You'll find we are one big extended family!
Keeping you in my prayers today!
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Justasis,
God Bless you. Your sister is very fortunate to have you by her side. Let us know what you discovered from the Docs. You will find a lot of support here.
Patti U
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Thank you all so much. I'm sitting here with tears in my eyes, feeling this relief that I have someone to talk to. My sister went through brain surgery a year ago and gamma radiation 2 months ago. Today, we went in with a list of questions. She was put on full time disability today which was hard for her but so necessary. They are doing an MRI tomorrow (on a Saturday) which has us both a little freaked out. I told my friends at work that I have found a group of people to talk to on line that are going through what we're going through and they all agreed it was a good thing. I hope I'm posting things right on here. I'll let you all know how the MRI goes. Thank you again for your kind words. They mean more to me than you'll ever know.
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Justasis,
Please know that we are here for you and your family. If you could give us a little more information it would be helpful--there may be some folks here treated by the same surgeons and radiosurgeons. What size was/is your sisters tumor and where was she treated? And do remember it can take a while for the tumor to show signs of necrosis after Gamma knife. Was her tumor initially debulked and then zapped or did she have a regrowth? The more we know about your sisters case, the more helpful we can be.
Hugs,
Capt Deb 8)
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Justasis, Just type away and we'll listen. Not a lot rules to message boards other than being polite. Welcome.
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Jusasis,
It is nine in the morning and we will "check-in" about the MRI and everything. There is occasional "spam" on this forum. We ignore and report it. I'm not, JUSTASIS, I'm "Justanewbie! 8) Give me a week and I will be a *postie* but, I'm here for you anyway. I have learned lots about AN since last summer when I was getting diagnosed. ;)
Hugs,
Palace
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Hello Everyone - My sister had surgery at Carle Hospital and her surgeon was Dr. Rak. I withhold my feelings towards the man. The tumor was much larger than they thought going in. It was attached to many nerves and pushing on her braincell. Nerves were cut during the surgery and she lost her ability to swallow. She was on a feeding tube for months. She refuses to go back on a feeding tube but her swallowing is getting much worse. Her tumor started growing back about 8 months after the surgery and we were told it is now a "fast growing tumor". They said her tumor was a "complicated" turmor and they were reluctant to do the gamma radiation. The MRI went okay hopefully we'll get some good news on Monday or Tuesday.
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Justasis:
So sorry to learn of your sisters AN and resulting post-op complications. It sounds as if her original surgeon was somewhat less than fully competent, which is, sadly, more common than it should be. The MRI will tell you what comes next but if its clear that she needs surgery, please, please, don't be panicked into choosing a neurosurgeon (and team) that may be less-than fully experienced in Acoustic Neuroma removals. Although a neurosurgeon may be well educated and fully certified in his field, that doesn't mean he (or she) is very experienced in AN removal....and that lack of experience can cause problems.
We're all AN patients on one 'side' or the other (pre or post-op) or close to an AN patient, as you are with your dear sister. Know that we will be here for you, individually and collectively, and that you can vent, question or post whatever you wish concerning this experience. That is the raison d'être for this message board. Feel free to avail yourself of it and it's members.
I wish you and your sister the very best and will say a prayer for you, both, tonight.
Jim