ANA Discussion Forum
Watch and Wait => For those in the 'watch and wait' status => Topic started by: Rivergirl on July 31, 2008, 07:56:02 pm
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I am so thrilled with finding this site and hearing all the stories that sound so much like mine, I don't feel so alone.
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Hi Rivergirl,
Welcome to the club! Since you wrote in the Watch and Wait section, I assume you haven't had any kind of treatment for your AN. Please give us some information to work with--size of AN, symptoms, when diagnosed and whatever else you might want to share. This is a good place to get support and information. You are not alone here. Hope to hear from you.
Nancy
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I was diagnosed in June and just saw and saw 2 Dr's in Boston yesterday, they were great, lots of information. I had been having problems with dizziness for 2 years, even hit the floor last year and taken out of work via ambulance and they only did an MRI this past June because I kept complaining. My AN is 12 1/2mm x 3 1/2 mm, tube shape fills the auditory canal. I have compensated well with the dizziness but the pressure, fullness and ear pain is the worse. The MD wants me to do the Vestibular lab, a CT and f/u with another specialist, so that will be in Oct if I can stand this feeling in my head. I am a nurse and sometimes I dismiss stuff with me thinking it will go away and not sure I convey the most accurate picture when I am the patient but I know this isn't right.Thanks for listening.
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Rivergirl~
WELCOME to our happy little group! I know that you will get lots of love & support here. Ask away...we have all been there or are very close to someone who has been.
K
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Rivergirl,
Being a nurse will have it's advantage as you learn who the best docs out there to treat your AN. Glad you found us, it's a wonderful place for support.
Julie
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Hi Rivergirl,
Sorry to hear that you have been though so much. All of the waiting and not knowing can be very frustrating. Hopefully someone here who lives in the Boston area can give you some ideas on doctors and treatment facilities that specialize in acoustic neuromas. It is important that you find a qualified doctor who has treated many ANs, and it is helpful to start your research now while you are waiting to see the doctor. Go armed with a lot of questions. There are many options for treatment so insist that your doctor(s) explain all of them to you. I am still watching and waiting, as they call it, since 2005. I am in the decision process right now because I have had a little growth and some hearing loss this past year. Second opinions and lots of research at this point, and I have been burning up this board with questions. I am almost to my decision point and being able to bounce things off people here has helped. No question is a stupid question, remember that! Keep us posted.
Nancy
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Hi, Rivergirl.
Welcome to the Forum :)
One of our moderators, Phyl (ppearl214) is from the Boston area. I'm sure she'll be along bright and early tomorrow morning to welcome you.
Phyl had CK so I'm sure she can answer any questions you might have about that.
Good luck,
Jan
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Hi Rivergirl - We're from the Boston/Cape Cod area and my husband had cyberknife done last October at the Beth Israel. Although he does not have an AN (his is a meningioma), we'd be glad to help you out with any CK questions you may have. Also, to throw more on my plate, I am a 6-1/2 year "wait and watcher" with a 9th cranial nerve schwannoma - sort of like an AN but on a different (close by) cranial nerve. Mine is now 12 mm and started out when found at approximately 9 mm with still hardly any symptoms. I'm also in the health field and I'm not sure if that helps or hinders as I expect quite a bit from my medical cohorts!!!
Glad you found us - keep in touch.
Sheryl & Larry (Spouses doing it together - brain tumors that is!!)
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Hi, Rivergirl:
Welcome! I'm always sorry to learn of anyone with an Acoustic Neuroma but I'm certainly pleased that you found us, as the message forums can be very useful. The folks who visit here on a regular basis are extremely helpful and supportive and I'm proud to be counted among them. :)
I'm sure it's a relief, of sorts, to finally have a definite diagnosis - a reason for the dizziness and other symptoms you've been suffering with. As you may know, your AN is relatively small but as is often the case with smaller acoustic neuromas, they can cause a lot of problems. Only you and the doctors you choose to work with on this can make the decision on treatment, but you're probably a candidate for radiation. As a nurse, you have some advantage over us in some respects. However, just about everyone who posts here has gone through the 'AN experience' (sounds like a DisneyWorld attraction, doesn't it?) and has hard-earned experience with Acoustic Neuroma issues.. Although we're not doctors and can't give medical opinions, we can offer practical advice - based on real-world experience - when you need it. Feel free to avail yourself of the help that is available here.
I look forward to seeing your posts and reading about your progress.
Jim
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Hello Rivergirl, As Jim says, it must at least be a relief to have a clear diagnosis -- and one that is treatable. Please try to check in with this group as you research and learn more about the treatment alternatives that are available. There's a lot of information to digest and doctos might have different opinions about the best way to go. Good luck with your process and let us know if we can help. Be well, Francesco
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After reading all the posting last night I finally figured out why I feel so out of it when I go in big stores and shop (Lowes, Grocery etc) it is the disequilibrium of me looking and walking and constantly trying to adjust, thought I was crazy!! And the dizzys that get worse with fatigue and stress, thought I was a baby or something before!! As much as it sucks, I now know there is a reason for my crazy symptoms. Now I can just be crazy cause I have this thing in my head.
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Thank you all, great comfort :)
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Hi Rivergirl and welcome.... good to see you here. I see you've met some of the gang and as you can also see, everyone is ready to help support you during this journey, as we tend to call it around here.
Although it may not be all that early *blows kiss :-* to Jan for the heads up!*.... I am also one of many here in Metro Boston that has had AN treatment. Can I ask who you've seen in Boston already? MGH? Brigham/Woman's? Beth Israel? There are many, such as myself, local to the area that have had all forms of AN treatments, so we are more than happy to assist with any questions regarding who you've met with thus far, particular treatment options (surgical vs. Radio), etc. I see you've met our dear Sheryl *kisses to you and that lovely spouse of your's!* already... as both of us can fill you in on the teams at Brigham/Woman's and Beth Israel. TSL/Teresa, MLB/Mary and jcinma/Jane have had radio treatments at MGH (jane also had surgery at MGH)..... many have had surgery at MGH/MEEI (kbonner/Katie, CMP/carrie, etc)..... another lovely lady in elliemae/elaine is like you... in watch/wait mode. These are just a few names that pop into mind as I type this.
So, we are all here to help... hang tough.... but please remember to take a deep breath... the research can be overwhelming and many find the decision making process the roughest (evenmoreso sometimes than the actual treatment!).... so, if need be... take a step back.... take that deep breath... and know that we all certainly know what it is to walk in your shoes... even when those in our lives don't understand.
Hang in there... and again, welcome.
Phyl
(how did I do, Jan? :) )
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As usual - you did us proud, Phyl ;D
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Welcome to our little club, RiverGirl! As someone said, at least you found it now AND it's treatable in several ways. Ask your questions. You definitely will get answers from those of us who have been there. Your AN is relatively small, so I would presume you have lots of options to consider. You will find (if you haven't already) that we run the table of people with options. To Phyl that had CK, to Jan et all that have had surgery, and even to Jim and Scott who had them both (Scott had 2 surgeries and radiation!!). There are lots of us with experience in all of the options, so ask away! Again, welcome here! (Oh, and we're all crazy aren't we? ;) )
Brian
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Don't forget Steve--CK. Wouldn't want to hurt his feelings because he is a great resource. Of course, he tends to hang out at the fish hatchery a lot these days doing research on ANs. Best wishes on your journey RiverGirl. Nancy
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(Oh, and we're all crazy aren't we? ;) )
Hey, who're you calling crazy here ???
We DO like to have fun - but not all of us are crazy! :D
Jan
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(Oh, and we're all crazy aren't we? ;) )
Hey, who're you calling crazy here ???
We DO like to have fun - but not all of us are crazy! :D
Ooh, Pooter got told off by a droll maven. ;D
Steve
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You guys are too funny. I am glad I have some time to weigh the options, I do prefer investigations before convictions, can you tell I work in law enforcement?
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(Oh, and we're all crazy aren't we? ;) )
Hey, who're you calling crazy here ???
We DO like to have fun - but not all of us are crazy! :D
Ooh, Pooter got told off by a droll maven. ;D
Et tu, Brute?
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I am also on the watch and wait and I was diagnosed a month ago. I have lost some hearing in my left ear, sometimes I feel like my head is slightly medicated, I get tired early afternoon and I have major tinnitus. I teach piano and I also perform with a piano quartet. My AN is 4mm x 9mm. I joined the ANA organization a week ago, read all the brochures and contacted the local person in Phoenix and plan to attend the next support group meeting. My neurosurgeon is at Barrows Neurological Institute. I feel very fortunate as to have stumbled on to this website when trying to find out more info on my AN when first diagnosed. Just reading all the comments on the website has helped me a lot!! So I thank all of you out there and please continue as it is a huge comfort to those of us who are newly diagnosed!
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Welcome Pauline -
Although I'm sorry to hear you have an AN, I'm glad you found the ANA and this forum.
It sounds like you are on the right track - joining the ANA, contacting a local person, planning to attend a support group meeting, etc.
Barrows has a wonderful reputation - you're in great hands :)
Jan
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Hope I didn't call any of you crazy.........it is me who felt crazy while I was misdiagnosed for 2 years before MRI. My Dr. said, maybe it was this or that but never did the MRI, even a few months ago when I said there must be something wrong in my ear canals, answer was no, (2 Dr.s)they look fine, I fell 3 times this winter and even showed the Dr. my huge bruise on my arm, still no MRI, after a while I really doubted myself. I told a friend about 6 months ago that I thought I had something growing in my head, I really wish I was wrong but sometimes we have this inner sense, I should listen to myself more, lucky it is not bigger than it is. Thanks for listening.........it is nice to vent my frustrations with people who know what I am talking about.
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(Oh, and we're all crazy aren't we? ;) )
Hey, who're you calling crazy here ???
We DO like to have fun - but not all of us are crazy! :D
Ooh, Pooter got told off by a droll maven. ;D
Et tu, Brute?
YEAH! Et tu, Brute!
Heh.. Is that better? And, I didn't specifically call YOU crazy, Jan. I said that we are ALL crazy. So, there, nyah! :p
Brian
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Pooter -
you can call me crazy anytime. It's been said before - most often by my ex in divorce court, but it was pretty much the pot calling the kettle black :D LOL
As Jimmy Buffett said, "if we weren't all crazy, we would go insane" ;)
Jan
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Et tu, Brute?
Yes, me tu. :D
Steve
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Jimmy Buffet does have some good sayings....
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Absolutely.
I'd quote a few more, but Phyl would probably tell me to get back on topic! ;)
Jan
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Hi Rivergirl-
And, a belated welcome to our fun little club!
Your story about the doctor misdiagnosing your for two years is yet another vivid reminder that we all need to be proactive in managing our health. I am so glad you persisted and finally got the correct diagnoses!
Meanwhile, I noticed a quote from you that caught my eye:
I do prefer investigations before convictions, can you tell I work in law enforcement?
I think Phyl may need some help with some recent hijacking attempts ... there may be something here for you... ;)
Wishing you well,
Debbi
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Pooter -
you can call me crazy anytime. It's been said before - most often by my ex in divorce court, but it was pretty much the pot calling the kettle black :D LOL
As Jimmy Buffett said, "if we weren't all crazy, we would go insane" ;)
Jan
Crazy! ;) (I just felt like doing that!)
Brian
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Hello Forum:
My sister Konnie is in surgery today, and she has asked me to update this website due to how overwhelmingly helpful it has been for her in this short time of discovery and now surgery.
Here is alittle back ground:
Email Konnie sent 7-30-08 (We just figured out how to post.)
( I am a new AN just found out three weeks ago by accident.Thought i had a bad sinus infection.
my left side of my face was numb went to the doctor and he ordered an MRI
and they found a 4cm tumer pressing on my brain stem and it needs to come out ASP.
I have one of the largest he has seen and it will be a long 10 hour or more surgery.
My doctor told me about this web site. It seems to be the best thing. The internet can be so
scary. I'm very interested to see how things have been going for others that AN tumor over 3.5cm?)
My name is Debbie and like to thank Leapyrtwins she has been so helpful and encouraging we (family) are so deeply grateful.
Konnie went into surgery 7:00am this morning and is expected to be 10 to 14 hours long. She is at Hinsdale Hospital with Dr Wiet
and Dr Kazan. They told us they will breaking as much up as they can, she does have a nerve going through the tumor and will probably loose all hearing in left ear. Your stories have been a God send, Thank you.
I am heading to the hospital and I will send updates and keep Konnie updated too.
Debbie (Konnie's sister)
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Debbie - Give Konnie our best after her surgery. We'll definitely be thinking of her during this time and beyond. It's great that she has a good support system (including this forum) with her like you. Recovery comes slower than one thinks and so she'll need help and support during that time. It's been 3 months (tomorrow) since my surgery and I'm not 100% back to "normal" yet. Granted, I'm doing most things like driving and working, but I still have some issues that need resolved before I'm back to 100%. We're definitely pulling for her and are here to help you or her whenever you want.
Brian
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To Konnie......my good thoughts for everthing to go well are with you.