ANA Discussion Forum
Post-Treatment => Post-Treatment => Topic started by: Kelly718 on March 28, 2012, 11:23:16 am
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Hello everyone, this is actually my second post this week to try and help ease the high anxiety I'm having about my appointment tomorrow for the results of my 5 year post op MRI. Thanks Jim Scott for your comments to my last post! Anyway, my doctor left a small sheath of tumor on my facial nerve and the MRI I had 2 years ago reported it shrunk. however, my doc will not tell me that it's dieing and its so frustrating! I consider myself a logical person for the most part, so it seems to me if the small piece is reducing in size it would mean it's no longer alive. Maybe I'm wrong?? I am trying to stay hopeful that this time it's at least stable. I would love to see signs of necrosis or more shrinkage! I guess I'm just looking for comments, similar experiences, and opinions on my situation. Tonight I'm sure I won't be sleeping at all! I have two small children, 2 year old and a 3 month old, so this would not be a good time to receive bad news!! I'm already jumping the gun and researching radiation because that's what my doc said I would need if it does grow. The things I'm reading about that are freaking me out even more! Post radiation effects and God Forbid cells turning malignant!! I'm always thinking of the " What If" scenarios and I know this is not good for my mental health or my family's. Please help ease my fears!! I thank you from the bottom of my heart!!
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Kelly ~
As you know, I underwent 26 FSR sessions on a previously 'debulked' AN and did just fine. The radiation stopped the remaining tumor from re-growing (killing it's DNA). I suffered no post-radiation problems to speak of. Subsequent MRI scans indicated tumor necrosis and the beginnings of shrinkage. Today, almost 6 years later, I'm doing great! Remember this if and when you are told that you'll need radiation - and consider FSR.
Jim
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Kelly, I would think that there would have been a small to moderate amt of growth already if there was going to be some since will be 5 yrs. I know it is a worry but just try to not over think it tonight. I do not see any reason it ever would be malignant. Thr dr may not say it is dying until it has been so many MRIs or a certain period of time, or maybe he is one who never calls it dying. Hang in there and hope for the best. Cheryl R
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Thanks Cheryl, that makes sense. I will know soon enough! :-\
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Kelly .....
Your anxiety is totally understandable but Jim and Cheryl are so right. I'm with Cheryl that if your tumor was growing, you surely would have had signs of growth on the previous MRI.
I can really empathize with your anxiety because I did experience regrowth (very, very rare), but I knew from the very first MRI out after my first surgery that something was not right on it. The doctor was very noncommittal, as most doctors are for, I'm sure, liability reasons.
Take deep breaths and think positive thoughts tonight. Many, many prayers for calm for you.
Clarice
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It took 4 years for my tumor to start showing necrosis. Now, 9 years post FSR it has shrunk to half its original size. Try to get past the malignant angle, I've never heard of an AN turning malignant. Things will get better, your anxiety will lessen with time. Here's hoping for great results.
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I am happy to report that there was no change in the last two years! Which means...I have reached the 5 year post op mark successfully!!! I feel great and my next MRI is in 2 years! I plan to enjoy every minute with my two children! Life is good again!! Thanks soooooo much for the support! :~)
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Congratulations, Kelly! :)
Jim
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I am so thrilled for you and to read this. I had my surgery 1-25-12, and they left a little piece of the sac. I have 6 kids at home...and understand the need to be around. I have had an amazing outcome and praying my 6 mo MRI and all subsequent ones are clear. Thank you for sharing;)
Stephanie
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Hi Kelly
Firstly a big congrats on the MRI result.
Do you (or anyone else) do anything to celebrate yearly on our anniversaries?
Hugs to all,
Suu xxoo
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Congratulations!
Am coming up on my 5th ANniversary also (5/31) and am looking forward to a clean MRI.
Jan
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I always buy myself something nice after a clean MRI! :~) Actually I kind of rely on "retail therapy" while I'm waiting for results! It's dangerous but makes me feel better! :~)
Jan, good luck to you and please let ud know how you make out!
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We don't have follow-up MRIs here. Do you guys have them after a certain procedure only. Mine was tanslab and they got it all.
I celebrate by getting dressed up and going shopping for a new blouse or outfit or having my hair done.
Cheers,
Suu xxoo
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I always buy myself something nice after a clean MRI! :~) Actually I kind of rely on "retail therapy" while I'm waiting for results! It's dangerous but makes me feel better! :~)
Jan, good luck to you and please let ud know how you make out!
Hmmmm.... retail therapy I like that surprised I did not think of that..
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Suu,
Most doctors here like to follow up, at least for the first few years after surgery whether they removed all of the tumor or not. Although the chance of regrowth is very low, this allows them to catch it in plenty of time to avoid another surgery and perhaps go for radiation instead. As anxious and scared I get waiting for the results, it's worth my piece of mind to just have them check. I'm sure you could request a follow-up MRI at least once every few years if your insurance covers it. I am not sure of your age but that also plays a factor. I am 31 so if my tumor did regrow, it could possibly get large enough to do damage in my lifetime. If i were older, this wouldn't really be a worry because AN's are so slow growing. I'm sure you will be fine and clean from now on! :~)
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Thanks Kelly. I didn't even have a follow-up appointment with the neurosurgeon and that was 18 months ago.
I see my ENT more often as he's 'rebuilding' me LOL I'll ask him next month if I can have another MRI and see what he says.
I'm 57 years young.
Regards,
Suu xxoo
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I am 4 months post-op retrosigmoid resection of AN and I'm having an MRI next week. My Dr. left 5% of the tumor because I had scar tissue from previous radiation. He said he couldn't take all of the tumor without causing facial paralysis. My concern is.....what if this tumor starts growing again. Do I have the option of going for radiation again? I have not done well psychologically even though I have no paralysis. I am totally deaf in my left ear; I do have problems with taste and smell; and, I have a difficult time with keeping my balance. I sure don't want another surgery. Thank goodness for this website!!!
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Hi - and welcome ~
As a non-physician, it's my opinion that the tumor probably won't grow again after being both radiated and resected. Still, the possibility of re-growth cannot be completely ruled out. That being the case, your question is best answered by a doctor familiar with your medical history.
Jim
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I am 4 months post-op retrosigmoid resection of AN and I'm having an MRI next week. My Dr. left 5% of the tumor because I had scar tissue from previous radiation. He said he couldn't take all of the tumor without causing facial paralysis. My concern is.....what if this tumor starts growing again. Do I have the option of going for radiation again? I have not done well psychologically even though I have no paralysis. I am totally deaf in my left ear; I do have problems with taste and smell; and, I have a difficult time with keeping my balance. I sure don't want another surgery. Thank goodness for this website!!!
Just wanted to say that you are not alone no matter what procedure was done when you hear that some of the AN was left behind it is only human to worry some are lucky with no facial paralysis but most of us has same or similar issues yet there are a few with only SSD...
Best Wishes,