ANA Discussion Forum
General Category => AN Issues => Topic started by: Derek on December 31, 2007, 01:11:06 pm
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I am interested to know what the general consensus is regarding individual thoughts upon initial AN diagnosis i.e. do you consider that you have an 'illness' or a medical 'condition' and is your opinion influenced upon whether or not you have to any degree, any of the well documented side-effects attribtable to the AN?
Do the thought processes change post microsurgery, radiosurgery CK / GK etc i.e. do you then consider yourself as no longer having an 'illness' or medical 'condition' and are able to move on in life or is your post treatment mode largely dependent upon whether or not you are left with any degree of debilitation?
For the record, my personal thoughts as a 'wait and watcher' approaching the commencement of my 7th year since diagnosis, is that I presently have a medical 'condition' namely a benign tumour on the 8th cranial nerve (I refuse to acknowledge that I have a BRAIN tumour) which will remain so until when and if it is considered necessary for treatment intervention whereafter I will consider myself as no longer having a 'condition' if there is no evidence of re-growth re microsurgery or further growth re radiosurgery irrespective of any lasting side-effects e.g. as in my case, the effects of single-sided deafness.
Just my own personal way of coping I guess but just wondered how other folk handle the situation.
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I would call it a medical condition. After a successful treatment, you can consider the condition cured. However, it seems to me that even if it is cured, you have still been changed by it. Just as someone who has had a heart attack, however well they may recover, remains for the rest of their life as "someone who has had a heart attack", an AN patient is changed forever by the AN. The change may be big or small, and easy or difficult to adjust to, but I can't imagine anyone saying that their AN has vanished without a trace.
In my case, 15 weeks after radiation, I can't decide whether to say "I have an AN", or "I had an AN". If it is still there, but it is dead as a doornail, do I still have it? ???
I'm not going to worry about it, though. ;)
Steve
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I guess I would class myself as it being a 'condition'. I think that is what is so hard about this whole darned thing. While I did have sudden hearing loss on the left side, tinitus and some sporadic balance issues I do not consider this an illness. I, for the most part feel absolutely fine and that is what miffs me so............... I will be getting treated this coming year 2008 - and I am sure I will face many obstacles and accomplishments - but the fact remains that I will probably feel worse post-op than I do pre ........ but at least the buggar will be GONE!
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Derek, Although I have had Translab for my AN, I know that I will watch forever to see if a schwannoma regrows from an unseen "cell" that may still reside there. This prospect does not scare me one bit. My positive attitude toward this unseen thing is partly due to my age. At 66 I know that I will cope and age at the same time. This is my life. It is still good.
I think of the after effects of my AN as a slight disability. I do not have a handicap parking sticker, I do not wobble when I walk, I do not have pain nor headaches. Instead I have an everpresent need to have others know that I guard my balance, I prefer non alcoholic drinks, I dislike noisey places, I am very particular about sleeping arrangements, and once in a while I get very cranky and need to take a quick nap. This is my life. I guess I'd also have to call it a condition.
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Denise, After treatment one has to deal with the loss of hearing. We have to understand this as grief, it is normal. When recovery occurs we feel a sense of accomplishment for having overcome a life obstacle.
I guess the rude intrusion of the AN itself on our lives is the part of this journey that is so frustrating. Recovery from the treatment gives back control.
Your accomplishments as a Mother (and the challenges ahead :)) will give you the greatest sense of power of your life. The AN journey will give you more strength. My best wishes to you in 2008. Mothers are strong!
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Oh boy, I definitely consider this as a 'condition' I will have to deal with the rest of my life: eye issues are the biggest, constant lubricant due to an eyelid that won't close;
extra surgery to give me at least a 'hint' of a smile (hoping this 'joker' look will ease a bit), yes, this is definitely a condition, an ONGOING condition.
someone give me a glass of champagne please....
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Hi, Derek:
In answer to your query, I have to agree with the previous posters; that an acoustic neuroma tumor would be considered (by me) as a medical condition just like heart disease (often caused by clogged arteries) or, worse yet, cancer, which is usually manifested in the form of a tumor, albeit a malignant one, unlike most AN tumors.
Steve is correct in his assessment that even after having the AN treated, surgically and/or with radiation, effectively removing the source of the condition, the fact that we had an AN carries ramifications well into the future. The unilateral hearing loss, eye, balance and other issues all make simply forgetting we ever had an acoustic neuroma virtually impossible. However, like Steve's example of the recovered heart attack victim, the former AN patient can never realistically say that their AN has vanished. The actual tumor may be gone (or eventually disappear from an MRI scan) but the memory and often the emotional scars stemming from the AN experience linger on. The exception may be the fairly rare AN patient in their teens or early twenties who has a complete recovery and will probably be around long enough to actually forget their AN experience. However, I have to doubt that even those folks will ever totally forget their 'AN experience'.
Good question...thanks for posing it. :)
Jim
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Derek,
If I had to pick one of the two, I'd say condition as well. I usually call it a disorder, because that's what it feels like....disorderly. It's not an illness, I will never be "cured", even if it never grows back. I will have side effects for the rest of my life, so that leads me to want to give it the full benefit of being a "brain tumor". It was pushed into space where my brain was, and is now again. The protective lining around my brain (dura) was cut and the fluid was drained, so it might as well of been on it really. I'm not meaning this in a negative way, just factual. It is what it is, life goes on. I truly think, although not cancer, this is something very serious and use whatever means YOU need to cope with it. It's all just words, really, not what we feel about it in our hearts.
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I consider it an inconvenience. I guess technically it's a condition, like a broken leg. An illness is something ongoing for the most part, requiring medication or some other sort of treament.
Donna
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On my good days I call it an annoyance. I'm not sick as in not feeling well. Just this problem with the left side of my face. Face that doesn't move normally, no feeling, no blinkiing eye, no hearing. On my bad days, I call it really bad luck. But at least I have all my faculties. I actually had a co-worker ask me if I still had all my faculties. LOL
Jean
P.S. Happy New Year! I predict 2008 will be great.
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Personally, I guess I'd call it a medical problem that was solved when I had my surgery. The surgery led to another medical problem (SSD) which will be somewhat rectified by the BAHA once I have that surgery. At that point, the SSD will become a medical condition, since even the BAHA won't change the fact that I will forever be deaf in my left ear.
As others suggested, I also have to agree that the AN was, and the SSD is, basically an intrusion and an annoyance. But, I'm alive and kicking, and I'm eternally grateful for that ;D
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Wow...great question! I view mine as a condition, I deal with it daily but live my life the best that I can.
I normally tell people "I have a non-cancerous tumor on a hearing nerve....and it has robbed me of a portion of my hearing." Then if further questions are asked I say "I had it treated and now I just deal with it."
I watched a special on the severely injured Gulf War Veterans that have returned home and are healing from their wounds and one referred to his as an "inconvenience that he was living with." What a great attitude!
Gary
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I have found that for most people an explanation of what I have is in the catagory of "too much information."
I now tell them, with a big smile;
"You know how some people get to a certain age and they have a bum knee, or a bum hip, or a hinky foot? Well, I have a bum ear."
People accept this with grace. If I tell them anything else, the Q & A goes on for ever.
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Hi Derek
I really woulld like to think that I did not have a medical condition but alas when it comes to renewing my annual travel insurance
there it is as a medical condition again and so far no insurer has offered cover to inclucde my AN . This makes me also ask the question of whether people like myself who have had GK or are watching and waiting will ever be considered "cured" ?
Regards Kat
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A sentence - maybe? That is what it feels like today. I am yet to have two blips on my MRI scans officially diagnosed and I feel like sentence has been passed prior to the trial by my peers. My son fiorst and as of today, my brother have both decided that all of the symptoms that I have presented with are just mental illness. Oh God, if only they were right. I am amazed at these supposedly intelligent adults who without information (they do not call to ask how I am or ask if there is/has been any change in my condition) can make assumptions and then dole out punishments to me. Has anyone on this site had to deal with this? If so, where other than God do you find the strength? The days to my first appointment with a Neurotologist are ticking away like they are hours. I have as of today decided that the people in my life who remain in my life will be with me. I just can't deal with one more person taking claim that this is mental illness and then ostricixing me as a result of that assumption. Please help me get strong for what lays ahead.
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Hey Carroll,
You may just have to ignore your son and your brother for the time being. It is often difficult for people with no idea of ANs or other head tumors to understand how these symptoms come up or how they affect us. Some people where I work seem to think it should be no problem for me to bounce back after treatment - they assume that treatment cures everything immediately.
Hang in there, you will get to your neurotologist soon, and start getting some answers about what is going on.
Steve
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Dear Carol. I am very saddened to see your son have the attitude that he does. As a minister you would think he would have a better understanding of people and their problems and and the abilty to help them with them. It is very hard not to take it personally and I wish I had a perfect answer for you but I don't. Just take it day by day and do the best you can each day and know we here really do understand what it is like. Waiting to see the dr is hard enough without this hanging over you also. We will be thinking of you!
Cheryl R
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Since mine was found incidentally, and I don't yet have sympoms, I call mine a worrisome condition that gets the best of me sometimes (the worry, that is). I still don't even have a doctor. As luck would have it, I wiped out the morning of December 23 in a glorious fashion. I was on my way to walk the dogs and for some unknown reason decided to put the rubber band from the Sunday paper in the "herby-curby" rather than the kitchen trash and slipped on a tiny spot of black ice that was lurking in dawn's shadow. I shattered my wrist, dislocated my shoulder and broke my arm. After surgery and three days in the hospital, I am home with an external fixator (I call it my towel rack) and pain at a level I never knew existed. I have had some major pity parties and am now reaching a point where I am ready to get better if I can. It is amazing what you can do with your teeth and one good arm (I wait until my husband leaves to fold clothes, etc. so he doesn't yell at me). Happy New Year to everyone with our conditon or disease or "that thing" and please please please watch your step. It took me quite a while to type this with one finger and for the little perfectionist inside me to correct my typos but I wanted to post.
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Bless you Steve & Cheryl R. for your encouraging posts back. I just read them and the timing is good. I apparently gave my glasses to my husband today for safe keeping after church but have no recall of that action. This part - the forgetfullness, or am I losing bits of memory time?-is so disconcerting along with the other symptoms and then add on the son & brother issues and I know that only God and my wonderful hubby are getting me through the hours that remain between me and the Neurotologist's appointment. I consider you guys as part of God's outreach. Bless you all but I must admit that the futuristic possibility of treatment and the side effects of that treatment make me want to stop the clock and the calendar. Thanks for keeping this forum alive for us stumbling newbys to run to when this new world we literally stumbled into gets so harsh.
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Again , what a question! I guess now that the shock and fear of this thing in my head has eased over time, I guess I would also say it is a condition. One that reminds me daily that it is there. I have adapted to the symptoms. Some days are worst than others. Mostly when I am fatigued. I do feel that educating myself on this condition and joining this support group of tremendous people has helped me deal with this. When I read about others and realize how difficult it is for some to just get through a day from after effects of treatment, it has helped me and I count my blessings. What is it they say, " what doesn't kill you will make you stronger." This is my cross to bear and I will deal with it. Thank you for the support here and God bless each and everyone of you. Helen
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As luck would have it, I wiped out the morning of December 23 in a glorious fashion...I shattered my wrist, dislocated my shoulder and broke my arm. After surgery and three days in the hospital, I am home with an external fixator (I call it my towel rack) and pain at a level I never knew existed.
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It is amazing what you can do with your teeth and one good arm...It took me quite a while to type this with one finger and for the little perfectionist inside me to correct my typos but I wanted to post.
Ouch! Hi beancounter, I'm glad to see a post from you, but I am sorry to hear about the towel rack and the one finger typing. How long does that go on for? It is certainly enough to make me watch out for black ice. I guess it might take your mind off of the AN for a while. Lets hope the rest of 2008 proves to be better news.
Steve
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Beancounter - ouchhhhh!! That hurts just thinking about it. I feel so bad! That darn black ice will get ya' every time though!
Take care of yourself - forget about folding the laundry and teach those dogs how to walk themselves until the spring thaw.
My mother broke her shoulder and a few fingers in a fall a few years ago. She's already partially paralyzed in the other arm from a nerve injury. Talk about doing things with your teeth! She got pretty good at it after a few weeks!
Hang in there!
Lori
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Beancounter -
sorry to hear about your icy incident :( hope things get better fast.
Jan
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I like the "sentence" thought, as we are mostly sentenced to a lifetime of SSD or hearing loss, after treatment for our AN's. Some are "sentenced" with the facial paralysis, balance issues, and many other complications. At least it is not a "death sentence" as most of us fear at the time of diagnosis.
Sentence aside, to me it is a condition that I will live and die with. I had lasik surgery a few years back and I am amazed that they can do laser surgeries to mend poor eye sight, fix heart conditions, repair torn ligaments, etc., but they can't fix my damaged hearing nerves, so that I can hear, or mend a facial nerve so that someone can smile again. Let's hope that future technology will address some of our issues.
Cheers,
Mtn Gal
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I guess I would consider my "wait and watch" schwannoma a "condition". I'm lucky in that it does not cause any symptoms or illnesses and has just sat there for the past six years only changing a few millimeters and not pressing on the brain stem. Hubby has a meningoma that has returned and he had cyberknife on 10/1/07 but does not feel he has an illness even though swelling recently caused a seizure (scary situation with loss of speech and jerking hand motions). I still refer to mine as a "benign growth" rather than a brain tumor but, after four years I have finally started to say, "I had breast cancer" rather than "I have breast cancer". Today's yearly mammogram was "NORMAL"!! YIPPEE!! ;D
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I had a medical condition called AN. It was removed via surgery.
The only real repercussion I have from the surgery is SSD; I currently have this medical condition. Wonder if there are different kinds of "labels" for SSD? Is this called "secondary" SSD or "surgery-induced" SSD, so as to distinguish from others who were born w/SSD, and do not have anything that caused it??
Have any of you ever seen "It's a Wonderful Life?" I saw it again this Christmas. He was deaf in one ear, and made such a difference in life, like you all have. I love that movie!
Beancounter- So sorry to hear of your fall. Yikes! Hope you heal as quickly as possible!
CarrolMoore - My thoughts are with you!
Thornapple - I love your summary! I've had the same experience! Did you say this before treatment or after?
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Hi Derek
I really woulld like to think that I did not have a medical condition but alas when it comes to renewing my annual travel insurance
there it is as a medical condition again and so far no insurer has offered cover to inclucde my AN . This makes me also ask the question of whether people like myself who have had GK or are watching and waiting will ever be considered "cured" ?
Regards Kat
Hi there Kat...
I was extremely interested in your response relevant to insurance cover for travel. My particular bank current account features free travel insurance cover which is underwriitten by AXA and having perused the conditions relevant to the cover there is absolutely no restrictions concerning matters applicable to the acoustic neuroma condition, neither have I had any such problems pertaining to motor insurance cover.
Regards
Derek
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Hi Derek
That is very interesting . Maybe you could send me a personal message with more details as to which bank etc .
My biggest problem is propably the combination of worlwide insurance including USA for up to 4 months as well as sailing
and usually when you add my AN to that lot the choices narrow considerably and in the end I feel lucky to get cover excluding
my AN .
Best regards Kat
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Hi Kat...
I am sending you a PM with all relevant details applicable to the bank and the underwriting insurance company which may be of interest to you.
As an aside, just wondered if you have had a further MRI scan since Dec. 2006 and if so, I do hope that the good news is continuing towards complete necrosis.
Regards
Derek