ANA Discussion Forum
Watch and Wait => For those in the 'watch and wait' status => Topic started by: BBrock on December 29, 2008, 03:39:38 pm
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Hi all,
The more I read the more I start to freak out about this little bugger in my head. It seems so unreal to me. 8 months ago I was having no physical problems at all which was good since I am very active. Now, I feel like a big whinney baby. Last May I was going through a routine medical evaluation for demobilization and they detected a MINOR loss of hearing in my left ear. NO BIG DEAL I thought. Then after seeing an ENT he suggested an MRI because a very low percentage of this type of issues involves a tumor. Guess who won that lottery? I finally had my MRI performed in October, in the mean time a whole bunch of things started happening I could not understand dizzyness, headaches, nausea, loss of sleep, you all know. After having my MRI I went and saw a specialist at the beginning of November Dr. Backous in Seattle. That is when the bombshell was dropped. He suggested the watch and wait method since the tumor is small. I am not good at watching and waiting, and at the same time this is driving me nuts. Tomorrow, I go in for my second opinion at the University of Washington Medical Center. Soooo, after doing all of my research and Q/A sessions I worry about the possible side affects of having my little friend removed. I try to keep a good attitude about it but I get really down sometimes.
Thanks for listening,
Brian >:(
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Hi Brian
I am in the same boat - a watch and waiter and have become a tad obsessed about the whole thing.
I am somewhat of the opinion that some of the symptoms that you feel are highly correlated to anxiety - at least that was the case for me, the more I read, the more symptoms I had. For me, it was pretty much pre-diagnosis of the AN (which was just a few weeks ago - about 6 weeks after a diagnosis of a mild mild mild hearing loss) - pretty much most symptoms have disappeared post- diagnosis. I was nauseated, I was having spins, I thought my hearing and voice recognition had deteriorated blah blah blah. I now think my hearing has improved (still absent but better than I thought earlier) - my only 'real' issue at this point is tinnitus (a pretty, actually comforting white noise). So again, my opinion and was true in my case - and personally think completely normal reaction.
So ... how I am coping. I pretty much think about the AN at least once an hour (and sometimes for the entire hour ... what if, what if, what if). I am slowly gaining comfort with the idea as I feel I have read so much that my googles are just coming back with the same journal articles - and gosh, it is boring. It also helps that I think either radiosurgery or neurosurgery are pretty horrid options that I don't really feel like experiencing (really appreciated that 'never return to normal, just the new normal) so this watch and wait seems like an AWESOME option, and am happy I have this opportunity, regardless how long it might last.
But, just for a reality check, I have thought about counting down to my next MRI (wondering if you can add 'tickers' to our signatures) which is now, just under 5 months away. Did I say obsessed????? Thankfully, I have a balance test next week and a review of the results with the ENT - plan to queue up my questions again. My big one is - how many 37 year olds actually 'fail' the watch and wait? Such positive terminology.
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Hi Brian,
I'm sorry. I remember well how I felt after being diagnosed. I wasn't given the watch and wait as an option but if I had, I suspect I would have had the surgery anyway. It's okay to be preoccupied with this (it IS a brain tumor) so we don't consider you a whiny baby. Put your energy toward finding the best solution possible, and then make a plan. And post here often--we do understand.
\
\Best,
Marci
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Hi there Brian...
I am just about to start my 8th year in the 'watch and wait' mode and I really consider myself to be very fortunate in having that status as an option. In my opinion whether you eventually opt for stereotactic radiosurgery or microsurgery you, me and everyone else who is diagnosed with an acoustic neuroma will still technically always be subject to 'watch and wait' because of the necessity to have periodic MRI scans for the rest of your life to ensure that the excised or radiated tumour has not 'reactivated'...there is no safer alternative!
My way of coping with 'the thing' is to accept it as a normal part of my medical routine whereby I consider the annual MRI scan to be akin to a visit to the dentist or optician etc. I certainly will NEVER accept that I have a 'brain tumour'....I have a small tumour on my 8th cranial nerve which is non-malignant and treatable should intervention become necessary in the future.
Just as long as there is no deterioration in your symptoms and you have regular MRI scans and subsequent consultations with your neurosurgeon who advises that it is safe for you to continue in the 'watch and wait' mode, I see no valid reason to put yourself at any unnecessary risk, however small, with treatment intervention.
Unlike the trauma and absolute panic that we all experience upon initial diagnosis, after 7 years I now find that I am no longer preoccupied with the diagnosis and in fact I cannot recall the last occasion that the aspect of my AN was raised within my family circle...and long may that arrangement continue!
Best Regards
Derek
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Welcome to watch and wait, it does get easier. I don't obsess about it anymore but I do think about it quite a few times a day, especially due to poor balance issues (when I wobble and walk into the door jams and feel all woozy). I have tinnitis which is annoying especially when there is quiet ( I keep a sound machine next to my bed to take my mind off it). I have to agree with what is worse, pre treatment or post treatment, still scares me. Keep us posted on your second opinion and decisions, good luck.
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Brian,
i was in Watch and wait mode for 3 years but now I have to act as the size of my AN is 18mm. The cut off for radiotherapy is 25mm. That sounds a long way away but in the last year, my AN has almost doubled in mass so I need to act now'ish.
The thing to note about watch and wait which has gathered a big momentum and rightfully so, is that if you start to develop symptoms, you may want to do something about it because you will not regain any lost hearing nor will your tinnitus get any better. Surgery or radiotherapy my preserve your hearing at the time of treatment but it won't get any better.
the two surgical methods - middle fossa and retrosigmoid claim to be able to preserve hearing but from the posters on this forum, this is more unusual than not. I had middle fossa at the time my hearing was around 50% and am now deaf in that ear with chronic tinnitus. Unfortunately, my AN has grown back hence needing to act.
What is the size of your AN? this is rather important re treatment options.
Laz
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Hi everyone! Yes I`m in the same W+W boat. Just turned 60 but could have had this since my first symptom of tinnitus 30 years ago. Since discovered 1 1/2 years ago my .12x.06 AN has been pretty much the same. My symptoms till today are still tinnitus with minor high pitch hearing loss and a clogged feeling which comes with diminished hearing every so often and so far has always cleared up in about 4 days. This year its happend 3 times. Nothing else but this which is very manageable so far. Most the time I reast easy untill I my symptoms increase which get my wheels turning. I`m hoping what I`ve read is true that the older you get the more chance of AN`s have ran their courses. In any case it will never be pleasant to know every time you have some type of head symptom your AN may be acting up. This is still my choice until something indicates to me the necessity of acting on it. Then I will! God Bless and goo luck to all, Mickey
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Hi Brian,
I think Derek hit the nail on the head. Even if you have treatment, you still get to keep some or most of your symptoms, and you still get to have follow up MRIs off into the misty distant future, to be sure that it doesn't grow back. The bottom line is that ANs are not really fun. That said, you will get used to it, and find that you can still get on with life, whatever you may decide to do about the AN itself.
I will also add that there is a Cyberknife facility in Seattle, the Seattle Cyberknife Center, with a Dr. Vermuellen who is supposed to be good. So if you are looking into treatment options, you should look into radiation treatment as well. I went ahead and had mine radiated, with the hope of retaining the hearing I had left, which has worked so far, knock on wood. The tinnitus is with me for life, I suspect, but I don't really notice it any more. Life is good.
Steve
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Hi Brian and welcome,
As Steve said, ANs are not fun. The AN diagnosis is a frightening and confusing one. With a small AN all options are usually open to you and that makes it even harder. In my opinion, watch and wait is really only for those who are comfortable watching and waiting. I was not given this option because of my many symptoms, even though my AN was small at the time of my diagnosis. I was advised to treat it sooner than later because it is easier to treat a small AN, usually with fewer side effects. I was very lucky -- my only post-op problems have been minor balance problems and occasional wonky-headedness (a term you will see often here - kind of a bouncing vision thing).
I wish you luck in making your treatment or watch and wait decision. Please feel free to ask any and all questions and to come here to freak out, vent or join in the occasional hilarity. We are all here for you in whatever way we can be.
Best wishes,
Wendy
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Brian -
don't freak out! It's extremely tempting, but in the long run it will cause you nothing but anxiety.
I can relate to not being a good "watch & waiter" - something I just don't have the personality to do. I commend those who can, but I have nowhere near the patience necessary.
Although as you know, there are side-effects to both radiation and surgery, don't get too freaked out about them. Everyone's AN journey is different and there is no way to tell what you'll encounter with whichever treatment you choose.
In my experience, it's best to be aware of the possibilities, but not get too wrapped up in "what ifs". You'll spend endless hours dwelling on things that might never happen.
I decided to make sure I was fully informed about all things AN (my neurotologist also insisted on this) and then I just sat back and dealt with issues as I encountered them since there really wasn't much else I could do. In my case this wasn't easy, since I'm a certified control freak, but it worked well for me.
So my advice is - spend time researching your options, make an informed decision, pick a doctor or doctors who are very experienced in ANs, and go from there. There is life after AN treatment and there are very good treatment outcomes; take comfort in that and try to relax.
Jan
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Hello and welcome, Brian:
In a perverse sort of way, I almost feel fortunate in that by the time I received my AN diagnosis, my tumor had grown quite large, so waiting and watching were long past being an option. I underwent retrosigmoid surgery a few weeks later and radiation treatments 90 days following. It all worked out well, thank God. I credit Derek - who has been 'Watching and-Waiting' a very long time - with succinctly putting forth the proper approach to the situation, should you be able to simply keep an 'eye' on the tumor over a long period of time and not be required to address it. As Steve noted, even those who successfully undergo radiation or surgery (or both, in my case) have to undergo annual (or bi-annual) MRI scans for the duration of their lives, so the AN experience is practically infinite in that respect, as well as being distinctly devoid of fun.
Although your feelings of anxiety are distinctly normal at this point (we've all had them), I trust that you'll soon reach an emotional plateau where you can cease obsessing over your AN and come to terms with it, whatever those terms may have to be. Whether you can achieve that plateau or not, we'll be here to help, encourage and support you along the way. :)
Jim
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Brian,
We'll all been there...literally. Please believe me when I tell you that when you do your research, and make an educated decision on a treatment, a certain “peace� comes over you. I hope everyone else chimes in on this one…but you just feel better about your decision.
My suggestion is to do your research. The internet will OVERWHELM you with information. I’d also suggest going to your nearest hospital that has a medical library and just plain-ol “hit-the-books, magazines, and medical journals. The internet is a great source of information but I’d suggest using anything that is over 5 years old as just reference material. The newer material will help you make up your mind.
I’d also suggest going to Barnes and Noble and getting a good book on the body and nervous system. This will help you when you see the doc and he starts talking about parts that you just don’t have a clue on what they are.
The best news is that you found this site!!!!! There are many people here that were in your shoes. We will be here to help you through the rough times and celebrate with you through the good times.
Welcome and have a happy New Year!!
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We'll all been there...literally. Please believe me when I tell you that when you do your research, and make an educated decision on a treatment, a certain “peace� comes over you. I hope everyone else chimes in on this one…but you just feel better about your decision.
I agree, making a treatment decision definitely takes a load off your mind. Once I made my decision, I found that "peace" that GM talks about and I never second guessed myself.
I hope you find that "peace" Brian.
Jan
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Hi Brian!
Glad you are here - i am right there with you freaking out some days.
And i am not always comfortable with W & W -- but chose this for now until my next MRI.
(I read the report before the doc ever called me.... But even stranger yet, was my sister diagnosed 6 months prior!)
So - i knew some about ANs and what that meant after complaining about hearing loss for 12+ years!
You could say, as some others have on this forum, that i was in W & W mode and just didn't know it.
What is that saying? The best defense is a good offense? Although i chose W & W and don't want someone cutting into my head, i did decide to go find out all the options now to be prepared.
I am looking for that 'peace of mind' too. Just realized i have to also practice some patience.
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My best to you and your family in the new year!
Sincerely,
Sue
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The peace/calm that everyone refers to is real. And once you decide what to do you will feel it as well.
Marci
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Hi Brian
Welcome...I am very new here too and have found it very helpful....
I too am a W&W and its kinda driving me crazy....
Anyway. I too find I don't know if it is better to remove it while its small and hope for the least amount of complications afterwards or should I wait until it gets bigger and causes problems. My hearing is 100% perfect at this time and I just got my results from my ENG test. It shows a 35% deficit of my vestibular nerve (which explains the balance issues). Once I was diagnosed and realized that it causes problems with balance I started doing a lot of balance training exercises and am starting to see a difference this week. You can ask your doc to refer you to a Vestibular Therapist (it is a speciality in the field of Physical Therapy)
My problems are nauseasness. If I do too much I get nauseas, sometimes when i drive especially at night I get nauseaus. I like to describe it as constantly feeling car sick. All and all it is tolerable but I am undecided about the surgery.
So my plan is....I have an MRI scheduled for March 3rd then will see the doc right after that and see if there is any growth and how I'm feeling at that time...in the meantime, I am sending my test results the the House Clinic in LA and will be setting up appt with MD in NYC for a 3rd and 4th opinion.
Good luck to you and if your freaking out just know it is normal and there are a bunch of us out there freaking out with you....lol...hang in there
Dawn
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Hi Brian,
My AN was 2.5 by the time it was discovered in July 2007. Amazingly, I was essentially symptom free (other than minor hearing loss that I had astutely attributed to other people not speaking clearly enough) until around March 2007, then suddenly the symptoms began to emerge. Due to its size, I needed to be treated and I saw several doctors and did a bunch of internet research to decide whether to have surgery, GK or CK. I detail all of this, and how I came to my decision to go with CK, in my website below (in my signature line).
When I went in for CK, basically what I was told is that my symptoms were very unlikely to get worse, there was a reasonable chance that they would improve, and there was a reasonable chance that the symptoms I had on the day of treatment would remain. In other words, I had to be prepared to live with my symptoms as they existed on the day of treatment. At the time of my treatment, I had some very minor hearing loss, some numbness around my right lip, and dizzy spells. As it happens, my hearing has remained unchanged, the numbness has gone away and the dizziness has greatly subsided to the point where it does not significantly impact my life or the activities I'm capable of participating in. There were months of very bumpy patches, but I'm now doing fine. (The "post-treatment" section of my site recounts my progression after CK treatment.)
I'm of two minds about W&W. On the one hand, I think it makes a lot of sense to delay the trauma of treatment as long as possible and just enjoy life as it is. But on the other hand, your pre-treatment symptoms may impact your post-treatment quality of life, and delay in treatment may result in the onset of new pre-treatment symptoms. After all, most people W&W until they become symptomatic. There is also the risk of continued, irreversible deterioration in hearing.
I raise these issues as things you should explore carefully with your doctors. My main suggestion is go see a few neurosurgeons now--preferably ones trained in both surgery and GK/CK, so you get all perspectives on treatments and your current situation. I agree too that perhaps deciding on a treatment now might help take a load off.
Best wishes,
Francesco
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Nicely put! I agree and disagree. That all depends on your situation. If your 60 or better with a AN around 1 cm range with manageable symptoms it really pays to W+W. Many studies have concluded that AN`s can reach their maturity and not need intervention. As far as loss of hearing as a normal person ages things like that are a common occurance. With normal MRI monitoring there isn`t much to loose. In a younger person I do agree that maybe it would be best to "nip it in the bud" Much better chance of recovering with just to much time to W+W. In all cases it`s individual and hope all do their homework and make the best decision for themselves. With God`s help all will be fine. Mickey