ANA Discussion Forum
Archive => Archives => Topic started by: Sue on March 15, 2006, 04:21:43 pm
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Well, this is quite a sophisticated site! Kudo's to whoever designed this. Anyway, I feel like I"m at an AA meeting, although drinking has never been my problem!  Hello, my name is Sue and I have Acoustic Neuroma and Meningioma. At last there is a name to accompany the symptoms I've slowly accumulated for over a year. Boy, this was NEVER on my radar. But a few weeks ago I had a dream and I was telling somebody, "I have something wrong with me, I have something wrong with me." I remember very clearly saying that. I think my brain cells were saying, "Hey, over here! This thing shouldn't be here! Wake up!" It took such a long time to get to the right doctor for me. It wasn't until I developed numbness on the left side of my face and told the doctor that I was sent to a neurologist who ordered the MRI. (Boy, THAT was interesting.) This was last Friday. Monday afternoon my husband and I were at the neurosurgeon's office. This Friday I will see another doctor who will talk to me about the gamma knife procedure. My doctor does not recommend surgery as he believes there is too much risk for facial paralysis and total hearing loss, but I sort of see now that that depends on the tumor (Don't you HATE that word?) location or size or something, I guess. I had my 60th birthday on March 1, so I will be interested to see if age has anything to do with proceeding with gamma knife treatment or not. I just would like this to not get any worse than it is now. I was disappointed to learn that my hearing loss is permanent and that the hum of tinnitus will probably not get much better (but, then maybe it will) but happy to know that this neuroma is not so uncommon, although I've never even heard of it before. So, anyway, here I am. As Gilda Radner as Rosanne Rosannadana used to say, "It's always something."
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Hi Sue,
Welcome to our super-exclusive group! Ass you can tell there is a wealth of information and experience on this site, so research, research, research! You will find the treatment that is the best fit for you. Be pro-active in your choices and you'll be OK! How small is your AN? If you go to the profiles section of your personal page, you can log in the size and status of your AN to give us a frame of reference on you--it will come up whenever you post. 8)
Captain Deb
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HI Sue,
Did you know you just became part of a very exlusive group? We dont just let anyone in you know! Actually sorry you have to join us but as Capt Deb said..research your options, go with your gut and don't go along with something that doesn't seem right to you. You know yourself the best. Have you sent off for the booklets from the ana society? they were a big help on what to expect and questions to ask your doctor.
Please keep us posted on how you are doing. We're all in this together!
How big is your tumor? What side? Like Deb said it gives us a point of reference.
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Welcome Sue! I am new as well, and just got the ANA booklets and they were really great...had some info I haven't seen online. I'm having to wait 3 weeks from MRI to my next appt, but it's giving me time to learn tons...ANs grow slow and do take that time to do proper research on everything. This site is really helpful and informative and we'll always be here to offer support and answer questions...all you have to do is log on! I've been passing on threads to my boyfriend too, and your husband might be interested to get in on all the "fun". Good luck, let us know your "stats" and keep us updated!
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Sue where is vancouver usa? 2cm is considered a large tumor but within ranges from what I was told for basically all types of treatment. It seems to me that everyone was told different things depending on your location (state and maybe tumor location)
Is your tumor on the right or left side? Do you have brain stem involvement? I learned a lot in regards to my tumor and what it was affecting when i requested a copy of my mri to take to a specialist.
Just know we are all here to help you in anyway we can!
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*stands up in front of group*
*ahem*
My name is Phyllis and I'm an alcho...ooops, wrong meeting, wrong day! :)
Hi Sue,
I see all the wenches got to say hello before I did! ;) We're not really exclusive, we are just a bunch of folks with a vast array of AN histories, experiences, outcomes and warped sense of humor :)
Vancouver... would LOVE to visit. And... belated Happy Bday to you. :)
Been on this site since mid-to-late last year. Everyone here not only welcomed me with open arms, but filled me with a wealth of info to help me with my decision (I decided on Cyberknife and will begin treatments in 2 weeks). Everyone here is very open to discussing our situations (each varied in it's own right), our thoughts, our feelings in dealing with what mother nature has now dished out to us.
We share, we giggle, we feel, we inform... but most of all, we support each other in ways I certainly never imagined. So, sit back, put on your seatbelt, enjoy the ride and don't let the girls near your wallets. They are looking for bail money for the mischief they are plotting.
(truly, welcome... I hope you find the info and support here that you may need)
Phyllis
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Hello Again,
Thank you for your support and concern and humor. I'm a big fan of humor. ;D I'm going to officially join the club today so I can get the literature.
Vancouver, Washington is located just to the north of Portland, Oregon across the mighty Columbia river. Lewis and Clark traveled through here on their way to the Pacific Ocean.It was Ft. Vancouver and later just Vancouver. I am a native Oregonian however and lived most of my life in that state. There used to be only one major bridge between Portland and Vancouver; the I-5 bridge. The inconvience of using just that bridge kept Vancouver and Clark County (named for the before mentioned Mr. Clark) small and very rural. Then the engineers figured out that they could put in a second bridge along with a new freeway, known as the 205. Because of the new access to Clark County, this has become Washington State's fastest growing county in recent years. It's become quite the boom town and it's still developing and changing. Like many Portlanders, we followed the migration north because housing costs and utility costs were cheaper over here. But it is catching up to the Portland market and I don't know how anyone will be able to afford a house pretty soon.  Vancouver, Washington is often confused with Vancouver, British Columbia. But once you SEE Vancouver, WA you would certainly know you are not in Vancouver, BC!! LOL But if you ever get to Vancouver, BC you will certainly want to get on the ferry and go to Victoria, BC, arguably the prettiest city in the Northwest.
I will admit that I got a bit depressed yesterday after reading some of the material on this site. I saw that my "visitor" is bigger than others and then decided that I was upset with my ENT guy for not getting me a MRI instead of a CT scan, because he said, "No tumors!". Oooops. Then I thought, well, some of this is MY fault, because I didn't go back to the ENT last FALL/winter for a follow up. I had been to some sites regarding tinnitus and so I thought...well, I'm stuck with THAT for the rest of my life. So, I have some guilt here that I didn't go back when I should have. The facial stuff came on so slowly that I really can't remember when I first noticed it....but sometime this last winter I guess. So I went for my physical January 6th and that's when I mentioned it to my doctor. I couldn't get into the neurologist until MARCH 3. MRI on the 9th, and a name for my "visitor" on the 13th. Miss AN, or Annie. I really hate the word tumor. Perhaps if I'd gone back last September or October I'd have had an MRI sooner, but would those few months made any difference? Probably not. They tell me I've had this for 15 or 20 years. Do most people have tinnitus as a first sympton? Mine started up sometime early in 2005. I went for an ear cleaning because I thought I had wax in my ears. Then I had the ENT appointment April 19, and a hearing test May 16. What bothered me the most was the feeling that my ears needed to "pop". So, see, perhaps I had two different things going on that confused the issue.  It was June 6th, 2005 that I had the CT scan. And June 14th the ENT put a tube in that ear. Eventually that feeling of fullness and needing to pop my ears went away. I would have gone in for a follow up appointment 4 to 6 months after that, and never did. So, I guess I'm writing all this junk out to put the time-line in order for myself and not to feel so guilty about not going back for the follow-up appointment, because I don't think those few months would have made much difference. And besides, there's nothing I can do about that now. That's water under the bridge, wax over the eardrum, whatever!!
My stepmom said, well, honey, maybe eventually you will just forget it's there. I said, I didn't know how that could be because I feel it every day. This AN whispers in my ear constantly and she's getting damn annoying!! This gives a whole new meaning to Snap, Crackle and Pop! Any tricks of the trade to deal with it better? I sometimes think I've done really well in managing it, since I haven't jumped into the Mighty Columbia River yet!ÂÂ
Well, sorry about this. I guess I've vented and whined enough for one day. I was diagnosed with Diabetes two years ago last November and I manage that with diet and exercise..I just figured my plate was already full and didn't need anything else! But, that's life. What will be, will be.
Thank you for the kind welcome.ÂÂ
Sue
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Hey Sue,
Don't beat youself up for not going to the doc, pul-lease!
I was told I had a marked hearing loss 14 years ago! I attributed it to lots of loud rock 'n roll, 25 years of scuba diving and free-diving, and going through a very loud hurricane. I really thought I was bulletproof. No one in their right mind would think--egad--a brain tumor!!!!
Research your options and be pro-active and take charge of your own treatment as much as possible.
Do you like to sail? We are planning a trip and need crew!
Captain Deb 8)
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Hi Capt Deb!
I doubt you want me to help crew any sailboat!! That would be a wild ride for sure.
I just forked over the $35 to join the club. I think I need to for this weird thing. Haven't joined AARP, or the American Diabetes Association, but THIS one, I'll join. Every disease/condition has an association I guess. Too bad the doctor didn't tell me that. Seems like they should hand you a pamphlet or something after getting this news. I just googled Acoustic Neuroma support group and there you were!!
Happy sailing,
Sue
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Sue,
Believe me the ride is already pretty wild! Check out the "good morning" thread if you'd like to view our agenda.
Welcome aboard!
Captain Deb 8)
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um, Parrothead Capt'n Deb... um... who's wild? ;)
Sue, our's is a powerboat... less likely to cause dizziness than blowboating! :) And as long as you are forking over money, I need new tires on my car!
(Sue, truly... welcome!)
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Sue, I've been to Vancouver BC and was robbed within 30 mins of parking the car. My SIL and I had taken the kids for an adventure..needless to say it was more than we bargained for. They lost their new xmas toys and we had to drive back to seattel with a busted out window in the winter..brrrr cold (me being a FL gal)
Is your tumor on the left or the right? The reason I ask this is....about 5 years or so ago I was diagnosed with Type 2 Diabetes. I never really responded exactly right but still had to deal with the food/sugar issues. Well...after they took my tumor out and I got off the Decadron I found out I am no longer diabetic all my test came back negative. My surgeon told me there was a study done that backed this up..if you have a tumor on your left side and have diabetes or high blood pressure it diminishes those two diseases. I'm not sure if there is any correlationg between right side an's and diabetes. It was a postive on a negative situation!
Don't beat yourself up over the doctor thing. I've been batteling my tumor for years so they say. I have all kinds of symtpoms and they never figured it out until I lost my hearing. They attributed it to everything else. Chances are you'd have spent all kinds of money for nothing so look at is this way ...you bought yourself some new shoes, clothes, car, trinkets, bobbles instead of the doctors a new car :o)
Know we are truly here for you..watch out for the humor it can be addicting!
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My tumor is on the left side. Hmmmmm. Interesting, if I understand you correctly. Your diabetes sort of disappeared after you had your AN removed? Wow.
Sorry about your trip to Vancouver, BC. Crime is everywhere, sorry to say. Even Vancouver, WA.
Sue
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It struck me as hmmm can't decide on word...it was promoted as such a tourist area only to find out it's druggie haven....
Yes, You understood me correctly after I got the decadron out of my system I was taking actos (30 mg) and was feeling horrible so I quit taking it. My A1c was normal and the surgeon had explained the tumor/diabetes connection so I questionedmy endo. She sent reluctantly for a 3 hour glucose tolerance test where I scored in normal range. My first one 5 years ago my first draw was over 200 something this one I was at 197 which is under but not by much. I'm having a major weight problem and feel if/when I get some of the weight off it will put me in a lower range. I still watch what I eat but not so freaked our or guilty if I eat a cookie lol It's def something to keep and eye on and ask your surgeon about.
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Welcome Sue,
I see that you have had the official welcome from the wacky wenches. I tell ya, it's hard to get a post in edgeways these days. Whenever I go to post, a message comes up saying that there have been two more posts since......
Firstly, I would have suggested to watch and wait re your little nasty visitor but because it is probably causing your facial issues, you may want to speed up your process a little. I have a re-growth and am watching and waiting and going balmy with the insane cruise crew, led by captain wacky Deb. Then there is our Phyl, well, there really isn't a word in the dictionary to describe "our Phyl" nor has an institution been built yet that would not go ahhhhhhhhh if faced a Phyl rehab effort, we also have a batty (say no more). gerrysmom is an interesting charachter as to is static and matti. Can't work those ones out yet but they are in the "jacko wacko" category as well.
Do your further research, ask lots of questions and then join our cruise. You can't miss the post its got about 5 million posts to it.
Laz
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Lar you're too funny! The Cruise thread has spread to other posts...LOL
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Sue: Don't "beat yourself" up about not returning to the doctor for follow up, in the long run even if the tumor had been found it likely would hae not made much difference in the final outcome given the slow growth rate of these type of tumors anyway (and that's IF the doctor had even done the right tests at that time to find the darn thing anyway). These tumors, for some reason, are often the last thing the doctor check for, I had symptoms for at least 4 years before they finally did do an MRI and that's was done only because I lost the feeling in my cheek and they were testing me for MS! Boy were they surprised with what they found! (I had thought for a long time I had some kind of serious brain tumor but couldn't convince me gp of that to get the tests).
Kathleen
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Thanks to everyone for their advice and concern. It's helpful. Visited a doctor this morning. We went over the options. With my age and size of tumor I am a good candidate for the gamma knife that Providence Medical Center has in Portland. He does not advise waiting and he thinks surgery should be my last option. My cousin is a nurse and she called me last night to give me all sorts of advice. She asked me about the doctors and if I'd checked them out and looked at my options and it's my decision and yada, yada, yada. I told her I go to the doctors that the other doctors tell me to go to, and that my "informed decision" would be about like if somebody told her, "Tomorrow you are going to Mars, which rocket do you want to take? The fast one or the other fast one? But you're going to Mars one way or another, so make a decision!" The only game in town is at Providence and I'll be going over to talk to the people who will be doing the procedure (along with this other doctor I talked to this AM.) I will be putting my faith into these people. I don't want to wait, because that will allow the damn thing to settle in more, and I don't want surgery because the risks are too great, so the only other choice in my area is the gamma knife. My doctor, who is very nice, said that Acoustic Neuromas are the most studied brain tumor and if I had to pick a brain tumor that was the one to get. I'd rather not pick one, but this one picked me, so gotta deal with it - by trying to kill the bugger. And in Portland/Vancouver, this is the only weapon.
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Sounds like you're perking right along Sue. You know in your gut if the decision feels right and I do agree. I'd opt for gamma first before surgery. non invasive before invasive I say. I had to go the surgery route and wouldn't want to wisht that exeperience on anyone!
Keep us posted!
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I'll let you guys know how it all comes out!! It still is unbelievable to me that I am having this experience. Must be some reason I to have this in my life. Not sure what, but I'll have to be open to learning exactly why....if there is an answer in this universe! Wow, went all Shirley McLaine on you all.
Cheers ;D
Sue in Vancouver, USA
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Sue,
For me, I had to establish what my prioities were and my absolute priority was saving my facial nerve.  I did a lot of research and consulting and I chose surgery at House Ear in LA as giving me the best chance of what I wanted to do. In spite of the risks of surgery like hearing loss (which I got) and headaches (which I got) my facial nerve was totally unfazed, except for a little rash which lasted about 2 years and went away. The outcome for my facial nerve with radiosurgery was not as certain for me as I wanted it to be.  Do your research and keep notes and write everything down and make yourself a file.
We're here for ya!
Captain Deb
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Sue,
Like you, I was fortunate to be given many options (micro-surgery vs. radio-surgery vs. radio-therapy). Not many here were in our shoes and actually, for me, having the options was overwhelming for me (see thread about confused and crying in this forum). GK is such a viable option (I've opted for Cyberknife as it's available here locally in Boston) and hoping that if you go through with it at Providence Medical Center, please never question your final decision and just rock and roll with it. Sounds like you are in great hands. Ask as many questions as you can. Leave no stone unturned. And if you speak to Shirley Maclain, see if she can forsee my lovelife with my Brit Cheeky Bloke... should I keep him or not! :)
Phyl
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I have a date for my gamma knife procedure. Finally. It's booked for April 18. I have a consult on the 11th, and they are sending me a DVD to look at. So, things are moving along. I just hope that I don't have too many ill effects afterwards. I see that some people have had a tough time after their procedure and I suppose many have sailed right through. It's very individual how our bodies handle this stupid thing that happened to all of us. Just curious, has anyone else experienced the feeling that their nose was really cold?? Seems like this is some weird symptom of this, but maybe not. ???
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Sue,
Thrilled to hear that things are progressing along... good for you! Like you and me, we should be confident in our decisions and not 2nd question them... just time to move forward and rock n' roll!
Cold nose? I live in New England... difficult for me to answer that question during the cold months! ;) :)
Phyl
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I got the DVD to look at today plus additional info that the hospital sent. I may feel a little like Darth Vader (my son is a big Star Wars fan), but I guess I can get through this. If nothing else, this will make for something interesting to say in our Christmas Letter. ;D
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Sounds like you're doing good....keep us posted!!
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Hi Sue, I too have a AN mine is 1.4cm now, I have diabetis,well I got it when they found the AN..This little tumor seems to bring out the best in all of us..Oh and by the way I am 54yrs old.. good luck and hope you keep us informed,,Oh it likes your memory too..Capt. Deb has a lot of info and lots of laughter to pass around ..Keep us updated..
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lmurray what side is your an on? I had type 2 diabetes what they deteremined was caused by the an. After having my AN removed I no longer have diabetes :o)
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I got the DVD to look at today plus additional info that the hospital sent. I may feel a little like Darth Vader (my son is a big Star Wars fan), but I guess I can get through this. If nothing else, this will make for something interesting to say in our Christmas Letter. ;D
Sue, if you are going to do your Christmas portrait with your GK headframe/Darth Vader look, I want to be on your holiday card distribution list! ;) :)
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Sue, if you are going to do your Christmas portrait with your GK headframe/Darth Vader look, I want to be on your holiday card distribution list!
OMG, wouldn't that be funny/scary? Thanks, you made me laugh!! :D
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OMG, wouldn't that be funny/scary? Thanks, you made me laugh!! :D
my job here is now complete! :D ;)
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I feel like I've been so out of it this week...here I am catching up on another thread! Sue, glad to hear you have it all worked out....I'm just up the I-5 from ya near Tacoma. Love the Christmas card idea!!! I was thinking of making my horizontal section MRI photos with my eyes in them into Halloween cards. We're so fabulously twisted here! ;D
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Those are def. some freaky shots with the eyes bulging like that...
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Yeah, someone said, I think in trying to cheer me up, that "well, at least the tumor isn't as big as your eyes". True, especially because they look so huge at that angle. And also from that angle the tumor looks like a fluffy ice cream cone.
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Ice cream cone - Have the Coneheads invaded us again? - quick, hide the choccie!
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Sue, good luck on the 18th. I am happy to hear you have decided on a course of action.
D.