A condition / an illness / or neither?

[Derek]

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.

[sgerrard]

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

[Denisex2boys]

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!

[Boppie]

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.

[Boppie]

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! 

[nancyann]

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....   

[Jim Scott]

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

[Gennysmom]

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.

[Charlotte Lady]

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

[Jeanlea]

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.

[leapyrtwins]

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 

[GM]

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

[thornapple]

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.

[kat]

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

[CarrollMoore]

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.