ANA Discussion Forum
Post-Treatment => Post-Treatment => Topic started by: bern on January 23, 2009, 05:05:46 pm
-
beside the mri, does the body tell you if your tumor has grown?
-
Hi Bern,
You can have inhanced balance issues and loss of hearing if the tumor is growing.
Sher
-
The only way to tell for certain that your tumor has grown is by use of MRI or other imaging technology (e.g., CT scan). You can't depend on symptoms to determine growth. Symptoms can increase for other reasons besides growth (for example, clinical or internal swelling).
Best wishes,
Tumbleweed
-
Bern:
Symptoms are an indicator and sometimes act as a warning but, as Tumbleweed states, an MRI is the only conclusive method of determining the possible growth of an acoustic neuroma.
-
Hi bern,
Through all the research done by AN patients for potential post-treatment (regardless if radio or surgical) after affects, we educate ourselves for what may or could occur post-treatment. In the case of radio, some report enhanced issues, some report issues that calm down... some stay about the same... and for the most part, many have learned to embrace the "new you".
It is very difficult to "mourn" an old body that has changed due to issues. Many here that know me and have met me (face to face) will share that my body has failed over the past 8 yrs due to multiple medical issues. I use to be a runner, a speed walker, in the gym 6 days a week (cardio and circuit training) and 30 lbs lighter. I miss my old body... tremendously. I miss the physical I use to do...... but now, 8 yrs later with continued and enhanced physical issues (ie: I now walk with a cane, some hearing loss, extreme levels of pain, etc).... I have embraced the "new me". I have learned that I cannot change what I am now and pray that each day makes me stronger to hold onto what I do have in life... and that my inner being has the strength for when the outer "me" doesn't want to cooperate.
Embrace what you have... you are here. You have LOTS of folks here that do understand... You have love ones cheering you on and supporting as best as can be. But most of all, you provide so much to others... by working at the school, by learning how to "deal" and trying to forge forward. That takes a great deal of mental strength and diligence and courage. You are doing great!
Please keep us updated on what the MRI shows. Remember to get a CD copy of the MRI and the radiology report for your files.... If I remember right, I thought you were in New England... and we'll be having a brunch soon out in Worcester MA. If you are out this way, please consider coming to the brunch, so all of us that will be there can give hugs and good ears and support and friendship.
We're here for you. Pity parties are great and we all certainly earn them..... but (to me), in the long run, they just drag you down worse. We're here to help lift you back up.
Hang tough!
Phyl
-
Hi, Bern:
Although I sometimes feel sorry for myself (or angry) on account of my decline since my AN reared its ugly head, I have to agree with Phyl. I dont mean this in a negative way, but this might be as good as it gets. Every day above ground puts us one day closer to death, with new illnesses arising as we grow older. My point is that twenty years from now, if we're still alive (we could get killed in a car wreck or other accident tomorrow!), we may look back at this time in our life and say, "Those were the good ol' days."
I'm not trying to be pious because, again, I have those days of self-pity and regret and anger, too. I'm just trying to relate what I'm striving for, even if I often fall short. Like Phyl said, we have to learn to appreciate what we've got left. Otherwise, we're just filling our remaining days missing all the good stuff.
Sincerely,
Tumbleweed
-
Bern,
Hi there. I will be thinking of your and your MRI tomorrow - hope things go well and you get some positive results!
I have not had any treatment (yet), but it is my understanding, as Tumbleweed said, that sometimes radiation treatment can produce swelling.
Anyway - hang in there, you are almost there (having the MRI).
Good luck tomorrow, and let us know how you are doing.
Sincerely,
Sue
-
Bern -
I'm with Tumbleweed and Jim. The only way to know for sure if there is growth is through an MRI.
Good luck tomorrow; I'll keep you in my prayers.
Please let us know when you have the MRI results.
Jan
-
Bern~
I, too, was a teacher before I quit to stay home with my own girlies. However, it was always in elementary school so it wasn't quite the environment you are in. Even in elementary school though, I had some VERY bad experiences - like the kid standing in my door after school showing me to his brother (neither was in my class), pointing & staring at my face & eye (& some other even worse ones, IMO). My face is paralyzed and I had trouble with my eye AFTER I went back to work at 3 months and ultimately had to have it sewn shut. I like to think that the kids that were in my classes, or that I indirectly came in contact with, were able to leave with a much broader understanding of people and how, just because you may not look like everyone else, you still have a lot to contribute in life. I comfort myself in knowing that it probably won't be right now, but some day in their lives, they will dig deep & remember that they had a teacher that "struggled" and overcame obstacles in life & they can too! I will be praying for you and your situations - let us know what you find out!
K
-
Hey Bern
I know what you mean about the frustrations with other people and hearing loss. They don't get it. But I do think you should look into a hearing aid. I wear one. It is a very discreet behind the ear model. It has made a world of difference in how I socialize with others. I was a corporate executive until my hearing loss became such a monster to deal with. I wish now that I had investigated hearing aids back when I was there. You might get some ridicule at first -- but at least you'll be able to hear it. After a while the novelty goes away and it's business as usual.
As for the MRI, just hum Comfortably Numb to yourself until it's over with.
Very best wishes. Hang in there. You're in my prayers.
David
-
Hi Bern,
I hope you're feeling somewhat better today. It is true that I would probably feel a whole lot better had I not had treatment for my tumor, but if I hadn't, I would eventually have died or been seriously disabled. So I'd rather feel rotten than not be here at all. I struggle some days to accept that this is the new me but I feel as if I've passed some kind of psychological plateau and am now at almost-acceptance. Hang in there, I hope your tumor is not growing and that soon you will experience less side effects. Good luck tomorrow and keep us posted.
Thinking about you,
Marci
-
Hi, Bern:
I just wanted to say we're all pulling for you. Sometimes these symptoms can arise after treatment but resolve a year or two later. I think there is a good chance your balance and ear pain will improve as the tumor dies and stops producing inflammatory compounds. You might even get some of your hearing back, although that's less certain.
The thing to remember to help you get through tough times like these: the present is not the future. Just because you feel lousy today doesn't mean you will forever. Many people on this forum have reported improving dramatically after going through a really rough patch post-treatment. Hang in there. You're going to be okay.
Best wishes,
Tumbleweed
-
hearing aides would make me a major target for teasing.
remember ..kids are basically mean! and curious at the same time ... that's their nature !! Adults... (at least those that have grown up wont think less of you) for wearing a hearing aid ... and you will benefic by better able to hear and take part in social conversions ... you will be surprised how well it will improve your attitude... What a good opportunity to teach the kids about deafness , hearing aids, and tolerance for those with hearing disabilities
post GK ?... sounds like you have a little post op normal swelling (thats a good thing!)... to early to start panicking now.. lets get that MRI done and see what we have....