ANA Discussion Forum
Watch and Wait => For those in the 'watch and wait' status => Topic started by: chrisransom on January 24, 2011, 11:07:02 am
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Just saying hello to you all who read this. Just found out in the previous couple of weeks about my AN. No serious symptoms yet - have a ringing in my ears but I've had that my entire life (almost 50 yrs) but last summer it changed and split into several tones. Then after that my ear felt full - so I had a good cleaning in August but it never really felt like they got it all - like I had water in my ear after a shower. Then in December 2010 the tinnitus tone changed again so I went to my local ENT who did an MRI and then sent me to the University of Minnesota to see a Neurotologist and , well, here I am.
17x21 mm on the left side. No loss of hearing - no other symptoms. U of M said they were a little amazed that I was there because most people have more advanced symptoms than me for as big as it is. So, today I am in the wait and see mode and am still considering the options. Who knows what tomorrow will bring.
Anyway - hello to all you fellow waiters.
Chris
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Hi Chris!
Sorry you are here but glad you have found us! We are here for you so feel free to ask us any questions that you might have! So great that you aren't having too many symptoms!
K ;D
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Hi Chris - and welcome to the ANA discussion forums.
Although receiving a diagnosis for an acoustic neuroma is no fun, it isn't the end of the world - but I'm sorry you have to deal with this. However, you do have options and, most likely, time to sort them out if and when the tumor shows growth. The types and intensity of symptoms differs with each individual. I trust your AN will remain stable and of course, should you have questions, please feel free to ask. This is an active website forum and we not only welcome you but, more importantly, we want to offer you our collective support. Please keep us updated on your situation. Thanks.
Jim
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Hi Chris! I am a fellow W+W goin into 4 years now. What you are saying sounds very familiar to me. I`ve had tinnitus for at least 30 years with it actually changing in tone over the past 5 years. Hearing still good and AN is "stable" (.12x.06) on left side with MRI` done yearly now. I know how your feeling and just wanted to lend my support whatever you decide to do. I`m hoping to stay this way staying as healthy as I can naturally hoping tommorow will bring good news. Best wishes, Mickey
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Hi Chris .....
Really do not have anything additional to add, but wanted to welcome you to this forum of caring, supportive friends. Also, I wanted to remind you that the ANA puts out excellent free informational materials. See: http://www.anausa.org/index.php?option=com_aicontactsafe&view=message&layout=message&pf=4&Itemid=195 They contain a wealth of information and much reassurance.
Since your symptoms seem to be stable for the moment, you have time to do some research on your options. In the meantime, let us know what else might be of concern to you right now. There are many regular posters on here who are very willing to share their experience from a patient's point of view.
Many thoughts. Clarice
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Hello Chris ;D Welcome!
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Thanks for the kind words. It's a little nerve-wracking and I'm trying to just roll with it. I really don't want to have a thing that has an Association! I mean, you never hear about a Liver Spots Association or a Deviated Septum Association. But as long as you're here it's comforting to know there are others to look to for advices, support and help. Thanks!
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Hi Chris,
Sorry you had to join this exclusive club, but WELCOME!
I am here with my sister, and we are both in Watch and Wait mode.
Sometimes, W & W is nerve-wracking for me - but i am grateful that modern medicine has the non-invasive MRI test that can track my AN.
I am so glad you found the Forum!
Continued success in W & W!
Sue
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What do you think of second opinions. I initially saw a general ENT doc who referred me to the University of Minnesota - which I visited a week ago. But I am fortunate to also be within very easy driving distance from the Mayo Clinic in Rochester, MN. I am considering a second consult at Mayo just to hear (ha ha) their point of view. Is this a worthwhile thing to do? I don't want to info overload but not sure if I'm there yet.
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I'm all for 2nd, 3rd, 4th...opinions!!
K ;D
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The number of opinions is totally up to you; do what you are comfortable with.
Some gets lots of opinions; others (like me) only got one. I was lucky enough to be referred to a neurotologist who does both GK and surgery and he had lots of experience. I liked him, trusted him, had complete and total confidence in him and his skills, so it was a no-brainer that he would treat me. My biggest dilemma was which treatment I would have.
Jan
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If you feel you want a 2nd opinion, then go for it. Come on down and check out Univ of Iowa too. Several from here have went there. Cheryl R
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Chris ~
I concur with the folks that advise you to obtain second/third opinions - with the caveat that if you find a doctor that, as Jan did, you feel confident with, trust his judgment and skill, go with that doctor and his recommendations. Like Jan, I was fortunate to find that 'special' doctor - a neurosurgeon - on my second consultation, the first being a total waste of my time (he was intimidated by the size of my AN and fudged on how many AN surgeries he had performed. All red flags, for me). My trust in that 'special' doctor was amply rewarded with a very good outcome to the surgery and later (planned) radiation. Do try to avoid information overload and remember that in many cases, you'll receive conflicting advice. However, ultimately, the decision on treatment remains in your hands. Of course, your friends here at the ANA discussion forums stand ready to support whatever treatment choice you make.
Jim
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Second opinion visit scheduled at Mayo Clinic for Feb 15. I have been reading many (many-many) of these posts over the last week or so and am learning more each day. I've read all of the brochures provided by the ANA with my membership - very interesting and a bit scary. But I am coping well - not freaked out - yet. If the folks at Mayo Clinic doesn't tell me anything definitive I just may keep going south, Cheryl! (not a bad idea in winter in Minnesota anyway).
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IMO, good decision on going to the Mayo Clinic. I like the ANA statement on the site's home page about having this treated by doctors with plenty experience. I had CK at a site where they'd only "zapped" a couple ANs, and my followup has been less than stellar. Although I was quite upset by the so-so followup in the beginning, it's improved. Nothing serious, just trouble getting help with further symptoms and side effects. My only regret is not having gone to a much more experienced team.
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Welcome Chris!
Read another post of yours. I had a med-large AN with minimal symptoms, just slow and insidious through the years.
Just depends exactly where the AN is on the nerve I guess. No two stories are alike.
Keep us posted. :)
Maureen
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Thanks all for the kind words of encouragement. I'm drinking it all in. Not trying to get too worked up about things. I've read many many posts all over the place in the last 2 weeks - you are correct. There is a different story for everyone.
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I found last week that I now have a AN 6x4mm left ear. I went through a month not knowing why the loud hissing, loss of hearing with the "fullness" and dizziness with waves of neausa. After talking to a surgeon then another about the Gamma Knife or Wait and Watch, I feel overwhelmed. The Gamma Knife seemed a good option, but does nothing for the dizziness and neausa along with the hissing.
The doctor said that if I could handle the symptoms "Wait &Watch" would be an option due to it's size. I guess I'm looking for thoughts of my position.
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Welcome, Donald. There are lots of people on this site who you can get advice and similar stories from. I am sure there someone here who's had similar size, symptoms, and experiences. The good news is that these things are quite slow growing you can take your time making a decision - learn as much as you can. That's what I am doing having only been diagnosed last month. Mine is 21mm and the only symptoms I have are a fullness in my left ear and a change in the tone of the tinnitus (from ringing to hissing, echoing and clicking) that I'd had all my life.
Ask questions, read posts, learn learn learn. It's scary but you're not alone- lots of caring people here to help you.
Chris
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I just wanted to mention that the one time I did feel some fullness in my ear a few years ago when first diognosed I did take a round of steroids. Within the week it went away and I really haven`t experienced it again. Tinnitus is there for as long as I can remember and I`ve tried many things naturally, which have helped over the years which I have mention in posts. Best wishes, Mickey
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I had my second-opinion visit at Mayo today and it went better than my one at the Univerity of MN. (I am NOT saying they didn't take care me at the U but it was my ifrst meeting and I was frankly quite overwhlemed by it all.) This time, thanks in part to ANA and you all, I was better able to ask questions and understand what they were telling me.
Anyway, as with the U docs, they were a bit perplexed as to having a person with very mild/negligible symptoms consutling with them. Drs. Driscoll and Link both gave me the run down on what I would probably experience if I W&W, pursued GK, or went for surgery. They said they tended to "lean" toward surgery but they felt that GK was also a viable treatment options. It sounds like they've done approximately then same number of procedures GK vs surgery - about 350-360 of each.
In my situation they said they could support any decision I made - that all three options were reasonable.
Soooo - here's what my gut tells me to do. W&W until June 2011 - get another MRI and audiogram. If it's growing or hearing is dropping off then re-evaluate at that time, Until then, pay a lot attention to my health, how I feel, if I perceive any change in my situation, etc and be ready to act on that if necessary.
That's what I told them and they said that sounds like a good plan.
I'm probably 90% on this - gotta digest it for a few more days.
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Chris,
I totally agree with your decision. You are doing your "due diligence" which is how we all arrive at our individual course of action! By June you should have calmed the nerves and be able to reflect on all your information and be able to make not only an informed decision but one somewhat free of emotion. Good-luck, we all share your dilemma.
Blessings to you,
Jackie
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Chris .....
Many of us have agonized over the decision of what to do when diagnosed. The hard part is all of the medical professionals being convinced of their own recommendations and when they are different that puts us in a difficult position. Glad you have compassionate and understanding physicians at a highly rated medical facility. That makes it so much easier.
You are doing a good thing with following your gut. I know you will be diligent to follow it up if you have a change in your symptoms.
Stay with us and let us know how you are doing.
Clarice
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Way to go Chris! June is just around the corner. In the meantime do more homework on whats going to keep you as healthy as possible. Such things as eating well, exercise, supplements, all natural ideas, power of positive thinking, religion etc. So much has been listed here for you to go over. It has helped me (goin on 4 yrs. stable) and many in the W+W brigade. Whatever the case going into your future you will be in the best shape to have a great outcome for whatever you decide. Best wishes, Mickey
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Chris ~
I'm short on time today so I'll be uncharacteristically brief and simply state that I believe waiting until June for another MRI while being vigilant about any increase in your symptoms is a good idea.
Jim
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Hi again, Chris!
Glad to hear you are figuring out what steps you want to take in this AN journey - it sure can be a roller coaster ride!
I did the same thing you will do - had MRI in Oct., then a repeat in April of the following year.
After the second one, with a neurosurgeon visit in-between, i decided on W & W.
I will say it is nice to have several options. In the meantime, i make sure to schedule my follow-up MRIs.
I like your plan!
Please keep us updated.
Sincerely,
Sue
Donald - Sorry you had to join this club but WELCOME, and glad you found the FORUM. FOLKS HERE ARE GREAT! ;D
Sorry to hear about your symptoms. Please consider additional opinions regarding treatment and keep reading on this Forum!
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Chris - Welcome to our little corner of the digital universe. I had the same water in the ear sensation about 20 years ago and eventually it lead to the diagnosis Aug. 11, 2009. I'm lucky as my AN is small. Let me share something with you that I don't think any of these replies to you has covered well enough. Joining this organization was the BEST thing that happened to me since I was diagnosed. From the moment I made the phone call until now I have had only positive experiences from everyone. And to know me is to love the cranky pessimist that I am. I got the packet and it had the list of people you could call. I reached out to 2 or 3 and they were great. Then there was a luncheon in NYC. I went and met some of the nicest people on the planet. Everyone is down to earth and willing to share their experiences and help you with your questions. This whole experience is difficult, and I can only speak as a W+W so I haven't had the "full experience" yet. I hope to never have it. For me, the first year was very difficult. I wanted that second MRI. So I had something to compare the first one to. Even though this thing has been in my head for most likely a very long time. I take it slowly. I read all the pamphlets. I joined the forum and got some good advice. I went to our first NYC support group meeting last month. I find there is a great variance to how people cope with this. I'm still finding my place with it. One day at a time I say to myself. I realize now that the symptoms I have now relate to this. I used to think it was getting older or something that everyone had when I got those dizzy moments, etc.
I'm lucky that I don't have really severe symptoms. Some days are better than others.
In all this rambling what I'm really trying to say is that you've probably found the best place to help you cope with your AN. I hope you are watch and wait forever.
There is a symposium in June. I'm going to go because I feel that it could be very good for me to connect with this in a positive way for 2 days (Learn, Share, etc). You may want to consider going if you have the money and are in a comfortabe frame of mind with it.
Glen
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I had my 2nd MRI a couple of days ago and I have a hearing test and follow-up visit with my general ENT next week (I'll post that result later). Back in April the "fullness" seemed to subside then toward the beginning of may it came back even worse for a few days, then subsided again. Right now I barely nitces it (or I am just getting used to it). But a few days ago I think I noted less hearing in the AN ear - it's really hard to tell for sure but it seems different. But I guess that'll be determined next week.
The Imaing center didn;t gie me a CD with my MRI"s on it this time like they did last December. At that time I took a peek at them before I saw my doctor and it was obvious that there was something on the left side of my head that didn't belong there. I can access my images online but I am debating on whether I want to know or not. Sort of like having a baby and deciding on if you want to know the gender. Only there's no bundle of joy after nine months. Just a blob.
I'll post again next week - ta ta for now!
Chris
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Chris .....
Thanks for letting us know what is going on with you. We are anxiously awaiting the "official" report on any possible growth of your AN.
From what I can gather, ANs can change shape sometimes, without really "growing" and cause different symptoms. That is why we always say that the size of an AN is only one factor in whether it is time to treat, or not. Much depends upon the progression of symptoms and your own comfort level in waiting any longer.
I have always asked for the CDs of my MRIs ..... in fact, I ask for two copies right up front ..... one for my personal records, the other to take to my doctor(s). I love your description of deciding whether to know the gender of your unborn baby or not. ;)
Many thoughts and prayers. Clarice
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Good news - the MRI showed no change since 6 months ago. My hearing is still very good - no drop in the audiogram. No change in the symtoms and the very subtle changes I have noted he feels are just me being uber-aware. These things ahve probably been going on all along and I am now paying attention to very very little things. We'll see about that! My ENT recommneded that I come back in 6 months and do it all over again. So, I'll hang out in here for another 6 months and keep reading all the posts!
Chris
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Congrats on the good report. I see another Dr for a 2nd opinion tomorrow. My original Dr just recently told me all is stable since my Jan 3, 2011 diagnosis and will schedule another MRI in Jun2012. Just do not feel comfortable as he never told me about AN's or options for treatment or even that I had an AN. Dr's in Cincy at the symposium immediately confirmed and showed me the little guy in my head. Thank goodness for ANA!!!
Skip
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Chris ~
Congratulations! I'm pleased to learn that everything has remained stable. Your heightened awareness of hearing and ear-related issues is not unusual and why we need the MRI to put things in perspective. Happy reading! :)
Jim
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I haven't logged on in a while - but just leaving an update to let you all know I'm still alive, active, and interested in ANA!
Last MRI in early January shows no change in my AN. New symptoms? Well, maybe the tinitus has changed in tone and volume a bit - but I actually notice it more in my unaffected ear and perhaps a little wonkiness for a few seconds when I turn my head quickly. But hearing test is "normal" in both ears - they say for a 50 year-old old my hearing is more like a 30 year-old's. No drop in the higher ranges (but I still can't hear those uber high ringtones that the youngsters use on those phones).
Anyway, still firmly in W&W and I'll try to check in more - take care all!
Chris
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Chris
I just saw this thread. I'm also in MN and had my consultation at Mayo on Jan. 19. I was very impressed with Dr. Link and feel quite confident about getting my care there eventually. For now I'm watching and waiting. Are you aware of our local support group? There will be a gathering in April in Edina. I'm looking forward to meeting other ANs in person. Maybe I'll see you there.
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I found your changing tinnius interesting. I have experienced several changes with mine. Mine is 24/7 and at times I hear several tones at the same time--like different levels & pitches. Does yours do this? I have lost all of my hearing (only 3 months after diagnosis) in the ear with the tinnitus, so it probably seems louder than it would if I could hear. My AN is small, t--7mm--but I have many symptoms. You're very fortunate to have minimal symptoms. Remember to read about all the post op complications when making your decision. This is why I am waiting. It seems like there are few cases where the patient is better off after treatment--except in the life threatening cases. I wish it was an easy decision, but it's not. Keep us updated.
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Chance -
Yes - my tinnitus is often like a sympony orchestra warming up - many different sounds. Sitting here repsonding to you i can hear at least two distinct tones in the left ear (the AN side) and right now it only seems like one in the right. But that could change any second. Often I hear an "outburst" - one ear starts pinging much loder than the other and it slowly fades back to "normal" When I go to bed I can often hear my heart beat in my ears for about 30 seconds and when I yawn it's just a rush of sound - like a TV or radio that isn't set to a channel. Sometimes it sounds like windchimes or a bell - a more hollow tone. Its just wierd.
Chris
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Only if tinnitus came in as part of the treatment for AN`s. Im sure that we all would pick the treatments which that would include. At this stage of the game I`m so used to it that I can`t imagine what it would be like without it. Sounds crazy... In any case I sure would like to try someday. Best wishes, Mickey
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I too dream of a day when I don;t have this ringing all the time. I know it'll never happen. My biggest challenge is sleeping in a very quiet room - it drives me nuts. A fan, a faucet, a breeze, a freeway, a freight-train - all are welcome distractions. I say take the tinitus - leave the AN. (hah!)
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Chris .....
I, too, suffer with unrelenting loud tinnitus ..... especially at bedtime in a quiet room. On the recommendation of my audiologist, I purchased a sound machine with under pillow speakers (mine is Ecotones® Duet Adaptive Sound Therapy Relaxation Sleep Machine with Bonus Sleep Therapy Pillow Speakers). I turn it on every night and then go to sleep with my only hearing ear down. Sometimes I have to really concentrate to focus my attention on the babbling brook (my favorite of the choices), but it is far better than listening to the clanging and squealing tinnitus. I really feel like it has helped me get a better night's sleep.
Good luck. Clarice
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Clarice - thanks for that bit of advice. i used to have this little aromatherapy-soundscapes machine that had the babbling brook, crashing waves, prairie wind and forest sounds. I liked the sound of crickets chriping and had it on daya nd night for years before I knew of the AN and before the tinittus got as loud as it is now. I loved it - but, alas, it stopped working a couple years ago. I hated the aromatherapy part though - little beads that smelled like soap. yuck. It's probably time to buy an Ecotunes!
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When you lose all of your hearing, you can no longer hear the sounds that you try to use for masking. :( Melatonin is my friend.