A condition / an illness / or neither?

[sgerrard]

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

[Cheryl R]

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

[beancounter]

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. 

[CarrollMoore]

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.

[HCSTARWIND]

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

[sgerrard]

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.
...
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

[lori67]

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

[leapyrtwins]

Beancounter -

sorry to hear about your icy incident   hope things get better fast.

Jan

[Mtn Gal]

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

 

[Sheryl]

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!! 

[kippy6]

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?

[Derek]

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

[kat]

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

[Derek]

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