Author Topic: When to stop? (Watching and Waiting)  (Read 2870 times)

MDemisay

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When to stop? (Watching and Waiting)
« on: January 11, 2013, 03:08:35 pm »
Greetings from the other side of watching and waiting ;D,

The good news is that there is relief, the bad news is that YOU (and your doctor) will have to decide when the appropriate time is to stop watching and waiting....Believe me, it is not easy dealing with the constant screaming (in your ear) and dizziness and fatigue is exhausting!

Myself, I was diagnosed in October of 2011 as having a regrowth, I waited until after the Holidays to see my Neurosurgeons Oncologist partner until January(that same year). I put off doing anything until June of 2012. I got 3 opinions and dithered and fretted and went online and asked for opinions and even asked for a Patient Advocate (who made my life easier by researching) the doctors I preselected. The final decision rested with me,
however! And I made use of the various patient experts on the ANA forum as well!

In 2004, I spent 3 months and lots of doctors visits (14 of them) and was obsessing about another surgery.....

This is not an easy journey! Anyway, in 2012 I finally made my decision about whom (Doctor) and where (at a well known hospital) and I just went on faith.

Today, 7 months (to the day) later after the radiation I am completely symptom free!

There is relief but you must take action!

No one can force this on you, you are the one who must decide when to stop!

What I am trying to say to you is, IT is in your hands.

You can name it, (as I did) but it begins with you taking control of your emotions and acting!

Some would say that in both cases (in 2004 and 2012), I waited too long. I would be inclined to agree, but then my story would be an old one and I wouldn't be on these boards telling you to gather your resources and research at least 3 reputable Neurosurgeons and go with your gut (and your faith) would I?

We here on the ANA forum are here to guide you, difficult as it may seem to you now, it is not insurmountable! We will do our level best (as non doctors) to give you our group support. You only have to ask(post)!

Mike


1974 - Dr. Michelson  Colombia Presbyterian removal of 3 Arterio Venous Malformations
2004- Dr. Sisti  NY Presbyterian subtotal removal of 3.1 cm AN,
2012 - June 11th Dr. Sisti Gamma Knife (easy-breasily done)"DEAD IRV" play taps!
Research, research, research then decide and trust in God's Hands!

Nannybee

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Re: When to stop? (Watching and Waiting)
« Reply #1 on: January 12, 2013, 07:16:44 pm »
Mike, congratulations on being symptom free! Did your tinnitus go away after the Gamma-Knife? That is my most maddening symptom and it seems to be getting louder. I was just diagnosed and am weighing having the treatment now or waiting for growth...not an easy decision for sure.
Thanks for sharing your success.
AN 18x19 mm
3 meningiomas
NF2
AN treated with SRS April 2013
MRI Feb 2016 AN shrunk to 17 x 8 mm :)
Constant tinnitus in AN ear
Severe hearing loss AN ear

MDemisay

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Re: When to stop? (Watching and Waiting)
« Reply #2 on: January 14, 2013, 01:31:47 pm »
Dear Nannybee,

I do not feel qualified as to what to advise you to do in your case as yours seems more complicated with NF2. I can only tell you what I would have done had mine been detected earlier, I would have decided that I would treat it with one shot Gamma Knife radiation.

As it was, unknowingly, I had let too much time go by with symptoms of an AN without really putting all the pieces together. I have what is called a partial paralysis due to a stroke that I had when I was 17 (in 1973)and these symptoms i.e. falling, becoming suddenly dizzy, and having my hearing go out in the shower and then having my primary doctor misdiagnose it as water in my ear ( I changed doctors!

If I could have sidestepped being single sided deaf and cutting one vestibular nerve I certainly would have. Be that as it may, I am not complaining, I seem to have adjusted to life as it is!

Mike

1974 - Dr. Michelson  Colombia Presbyterian removal of 3 Arterio Venous Malformations
2004- Dr. Sisti  NY Presbyterian subtotal removal of 3.1 cm AN,
2012 - June 11th Dr. Sisti Gamma Knife (easy-breasily done)"DEAD IRV" play taps!
Research, research, research then decide and trust in God's Hands!