ANA Discussion Forum
General Category => Inquiries => Topic started by: Ingy M on March 12, 2007, 06:15:30 pm
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Hello everyone,
I just wanted to fill everyone on the results of my MRI. I am now officially part of the group. My worst fears have been validated.
I have an AN in my L ear. :'( I don't have the exact size but my GP said it's the size of a grape. That's all he would tell me
I must say, even though it's bad news, I feel relieved that I now know what the heck is going on. I feel ok, but I think it really hasn't sunk in yet, even though I've been waiting to find out. Now I must wait until April 2 to see my specialist and find out what the next step is.
Thank you all for your amazing support and can imagine I'll be here a lot.
Ingy
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Hi Ingy:
Darn it. I was hoping you would be one of the ones to say: See ya, its been good to know ya.
I am so sorry it is an AN but, like all of us, you feel like we did when we finally rec'd the diagnosis. Scared, yes but it is nice to know you are
not crazy, isn't it? You did not imagine all the symptoms that GPs sometimes dismiss as other things. There is a bit of relief, I remember and now you can concentrate on hitting it head on. The size of a grape is good!! You could be a radiation candidate.
Well Ingy, welcome again and I want you to know, we would have missed you but we could have gotten over it!!
I am here if you need to talk, Kathy
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So sorry it turned out to be an AN. But if you're like me, it was almost a relief to have validation even though it isn't the best of news. The first week or so after I got a final diagnosis, I let myself get way too stressed out all the while reading anything I could find on the internet. Joined the ANA who promptly sent an information packet with loads of info. They also provided a list of emails of people that head up support groups and the cities/states where they live. There were 2 in my state of SC and just hearing back from them was reassuring. So know that you are truly not alone. Take care.
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Hey Bruce,
Yes, I was hoping for something along the lines of a grain of sand but beggers can't be choosers. The doc said it's the size of a large grape. Now I know that its a poor discription, but I pictured a globe grape. Actually, when he told me, I imagined an AN the size of a potato.. :P
Thanks for all the nice words of encouragement.
Suddenly, I feel like making a salad ;D
ingy
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Hi Ingy--Sorry to hear you have an AN, but know this website and everyone here will give you a wealth of info--but most importantly, be sure to do your research and whatever treatment you decide upon be sure you will have the best team around!! After all this truly IS brain surgery!!! Regards, Mary from MA...
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Ingy,
You found us... you got us (whether you like it or not)..... we're here for you to help you out....
{{{HUGGLES}}}
Phyl
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I just got a call from my doc. As it turns out I also have large tumor in my L sinus. This tumor is on the ceiling of my sinus cavity or the floor of my eye socket. It is vascular and there is some nerve involvement as well. IS there anything else that could go wrong? This tumor must also come out as it is putting pressure on my eye and causing cheek bone pain. if this is left untreated it could possibly affect my teeth and loosen them. yippee :'(
Has anyone heard of this sinus tumor? Why do I have both?
Oh man....
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Hi Ingy,
I am just so sorry that you have to deal with so much. AN itself is enough ..... I hope that whatever news you will get from now on are only the good ones. You are in my thoughts.
Flier58
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Wow....
Well, I'd never heard of an Acoustic Neuroma tumor before, so I guess I've never heard of a sinus tumor either. But, as we all know NOW, anything and everything can happen. So sorry to hear you have been hit with a double whammy, of sorts. I wish you all the best for your treatment (which you will get!) and your recovery (which you will have!).
Hugs
Sue in Vancouver USA
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Hi Ingy,
Sorry you too are a member of this club but there is lots of support here for you. I have not heard of the sinus tumor either but maybe someone on here has and will respond. Just remember you can be treated and you are going to be alright. Think positive which is not easy to do at this point. My prayers are with you.
Jean
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So sorry to hear about the sinus tumor too. On my MRI, in addition to the right side AN, the report also included a polyp or mucus retention cyst within the left sinus. The physician wasn't concerned about it and it is causing no symptoms at all. Scary what they find when they get to looking isn't it. There are so many websites available on the internet, but my favorite one that use in my work is emedicine.com. It requires registration but is free. It is a very thorough site including the history of the condition, other terminology that it may be known by, symptoms, testing that should be done, and treatment.
Please keep us updated and I will certainly be thinking about you.
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IngyM- Sorry to hear you had too join the club. Sometimes when people post we do not know where they are posting from. When you first mentioned waiting a whole month too find out-I thought-MY Gosh- does she live in some distant planet. Well I guess it just goes to show our Medical System in the States is not soo bad after all. Now that you know-I hope that whatever method of treatment you choose it will be the best. Is that possible in Canada though? Anyway-Best Wishes. Ron
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Thanks everyone for the words of encouragement.
Dealy..Sometimes I do feel like I live on another planet. I live in a rural area with very good care2 hours south, in Toronto. See, here in Ontario we have a great Doctor shortage. That is the main reason for the long wait. Many people here can't even find a doctor to take them on, so I am considered one of the lucky ones. The doctors here are so over loaded with patients and won't take on anymore. This problem is not throughout Canada, only here in the province of Ontario. Anyway, I do have an ENT doctor, but I still can't get in to see him until April 2. I just got the results from my family doctor, so I didn't get too many details.
As long as my head doesn't explode, I'll have to wait.
ingy
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Hi Ingy,
Sorry about the news, I understand exactly how you feel. But do know you have several options ...depending on where in your sinuses it is, it sounds as if a biospy is available through traditional means....no touching the brain...You tumor is in a similar spot to mine but if it is an AN, then it would be a little to the left,,,better actually. There are several surgical options available, as well as CK and GK....I would definatly find out what you can about fractionated therapy as it is most likely the best option for preserving those nerves...
If it is not causing you too much current trouble, those are the least invasive treatments and have good results....
Removing them is also an option....but know you have lots of time...they are usually very slow growing, so although April seems like a really long way off, if your Dr diagnosed you with an AN, they are pretty recognizable and they are a type of schwanomma tumor...which would explain the continued growth into your sinus cavity..relatively common, believe it or not. SO hang in there, you are not alone, read what you can, and find a Dr. you are comfortable with..that is the most key thing...there are lots of treatments available and you have to choose which is right for you.....
Ceeceek
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Ingy,
Sorry you have the An and sinus diagnosis. This place is full of info and support though and it won't be long before you are seeing your specialist. (yes Ron we Do have some "best" docs up here and treatment lol ;D). Ingy you may be up in the muskokas? I used to spend time up there a few yrs ago after a friend moved up there. Even used a good doc once up there when i needed one during a visit. My An was found in '05 so I already had my treatment and, before it, was fortunate to talk with 3 docs about choices and all of them are excellent in their field. I had the fsr treatment with Linac. If you want to listen to any info on the route radiation is taking there are some neat videos on this site, The Brain Tumour Foundation, and i'm guessing that you may already have found the ANAC site. They were so very helpful when i heard I had an An and I got lots of "local" info on the site too.
The very best of wishes, you can PM me any time here too.
windsong
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Hi Windsong,
Yes, I am in the Collingwood area and am seeing a doc in Barrie. I can't seem to get off this computer.
I will surely have to wait for my appt. This thing in my head is really throwing me for a loop.
Thanks for the info...I will keep in touch
ingy
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HI Ingy,
I used to ski in your area and later over at Horseshoe Heights. Half my family is up in Barrie now so i know they had difficulty find a gp.
About being glued to the pc after hearing about the An.... i was on mine for hours after I found out! That first weekend I found all sorts of information and after joining ANAC what was so very helpful was talking by phone with various people who had had treatment in all the various modalities... surgery, Gk, FSR. Then I also talked a lot with a CK patient. So by the time I went in to talk with my neuro and ent guy I already had lots of information. It helped because at least the words and some of the teminolgy was now familiar. What I liked about my neurotologist was the time he took to explain the different approaches taken in surgery plus he also talked about radiation treatment and quickly set up appts for the fsr and the gk. I could have begun the fsr earlier as i certainly knew in my gut that that was what I wanted but I had made this other appt with a second surgeon rationalizing that i should hear as much as i could etc. But I never did see that guy as there was a wait and i knew hwat I wanted so I cancelled that and had the fsr set in motion. I want to say that both my fsr doctor and my ear doctor have been very helpful and caring in all follow ups after treatment. Half the battle is knowing you are in good hands and feeling this is "right". Plus staff at both places are wonderful. At least that's my experience. Even some of my friends who were present at treatment still may comment on the amazing care shown by the staff there.
The BT Foundation is interesting in that they have the vieods of those speeches from the conferecnes and the doctors speaking are in the top of their field. Some of them are really amazing. Even the surgeon who is involved in the GK here is astonishing in what he can do in surgery. And my neurotologist teaches the new docs coming up too. There are always "fellows" around who come from all over the world.
Don't forget to sleep at night lol.... sometimes i got so caught up in searches i'd be up most of the night. Things settle down once you make a decision and a certain calm arrives.
Take care,
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Hello ingy. This is the best website ever. You can talk about any concern you have and there will be someone that can share their experiences with you. We are all basically alike and very different at the same time. I discovered this site after my surgery. I wish I would have known about this site before the tumor. Oh and----- we are all healthy people with this strange thing in our heads. We do not have a cancerous tumor that will spreador grow rapidly. I hope this site helps you.
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Welcome...Sorry for your diagnosis.
They discovered a mucous retention cyst the same time as my AN but they were not concerned about it....A cyst is different then a tumor.
Stinks playing the waiting game but this give you plenty time to research and weigh your options..if there is an option between surgery and cyber knife at this point where the An is 2cm size of a grape...and depends on locality (is that a word?)
Mine was in the inner ear canal extending into the cerbellapontine angle....kissing my brainstem....I just thought "get it out"
We are all here for you through out your journey....Take Care..Cindy
Moderator note: This thread is well over 3 years old. 'Ingy' hasn't posted since April, 2007.