Author Topic: Am I the youngest patient? :(  (Read 7458 times)

notsolucky

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Am I the youngest patient? :(
« on: April 24, 2016, 11:14:43 am »
Hello there,

I have been recently diagnosed with AN (12 mm) and I'm only 17. My physician and I came to a conclusion that WW would be the best option for now.

Is there anyone as young as me?

michellef08

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Re: Am I the youngest patient? :(
« Reply #1 on: April 25, 2016, 08:52:39 am »
Hi,
I was 27 when diagnosed so am among the youngest. I have seen posts here about a toddler - like I want to say under 5 years old, and another little girl who I believe was in elementary school? So you aren't the youngest! Good luck!
Diagnosed Dec 2012: AN 1.4 cm with mild hearing loss and tinnitus. Surgery: Middle Fossa at House with Schwartz/Friedman on April 10, 2013. Entire tumor removed, no facial issues, no balance issues, and they preserved my hearing!! Co-leader of the Washington, DC ANA support group since 2016.

Dr T

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Re: Am I the youngest patient? :(
« Reply #2 on: April 25, 2016, 10:05:46 am »
I was 29 when diagnosed. My neurosurgeon told me that diagnoses are typically made with much older individuals. (Because of the slow growing nature of AN, symptoms that call for diagnostic imaging don't tend to show up till much later.) I would never have been referred for imaging if I had not made a seemingly innocuous comment to my dentist during a routine teeth appt.

notsolucky

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Re: Am I the youngest patient? :(
« Reply #3 on: April 26, 2016, 01:55:20 am »
notsolucky

Sorry that you have an acoustic neuroma.
Please keep in mind all the principles of internet safety as you are under 18.
Forums like this are not a reliable way to get medical information. Members talk about medical things but we are not always accurate.
Please rely on your parents/guardians and your doctor for that.
Not everyone on the internet is who they seem to be. There is no way to tell who members really are and whether or not they are "safe people."
Never give out your real name, address, phone etc. even through private messaging.
There is a lot of overwhelming information on this board. Rely on your parents for guidance.
I know most kids your age are really savvy about the internet, but please be careful.

Your response is appreciated! Thank you for your courtesy reminder.

mcrue

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Re: Am I the youngest patient? :(
« Reply #4 on: April 26, 2016, 04:44:35 am »
notsolucky

Sorry that you have an acoustic neuroma.
Please keep in mind all the principles of internet safety as you are under 18.
Forums like this are not a reliable way to get medical information. Members talk about medical things but we are not always accurate.
Please rely on your parents/guardians and your doctor for that.
Not everyone on the internet is who they seem to be. There is no way to tell who members really are and whether or not they are "safe people."
Never give out your real name, address, phone etc. even through private messaging.
There is a lot of overwhelming information on this board. Rely on your parents for guidance.
I know most kids your age are really savvy about the internet, but please be careful.

Riiiight, and be sure to look both ways (and get your parents permission) before you cross the street. I would think "kids" just months away from their 18th birthday can safely navigate the ANA website from the "many trolls" looking for "teens with tumors".

Anyhow, I found a young Canadian woman on YouTube, who I believe was 17 or 18, when she successfully had microsurgery. Her story is very inspirational.

Best wishes!

https://www.youtube.com/watch?v=LCMSRBgJq58
5/19/2015 - 40% sudden hearing loss + tinnitus right ear

6/26/2015 - AN diagnosed by MRI - 14mm x 7mm + 3mm extension

8/26/2015 - WIDEX "ZEN" hearing aid for my catastrophic tinnitus

12/15/2015: 18mm x 9mm + 9mm extension (5mm AGGRESSIVE GROWTH in 5 months)

3/03/2016:   Gamma Knife - Dr. Sheehan

rupert

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Re: Am I the youngest patient? :(
« Reply #5 on: April 26, 2016, 02:39:44 pm »
I'm just saying that in this forum, anonymous people ask other anonymous people advice about where to have very complicated, life changing surgery and radiation, which, if you think about it, isn't really safe practice for any age person. I wouldn't want my 16/17 year old to get caught up in it.


Yikes!  The ANA forum is not safe for anyone. That's a new one I haven't heard here before.  I don't think anybody's caught up in anything.  The original post stated that there was a conclusion between him/her and their doctor. I think they are on the right track coming to this sight.  Lots of good information here with people that have been there/ done it.  People helping others in this little group we belong to is what it's all about.

mcrue

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Re: Am I the youngest patient? :(
« Reply #6 on: April 26, 2016, 02:55:10 pm »
Mcrue
Sorry that your eyes are bothering you so much. I hope you have a full recovery.

Obviously you were irritated by my post. I'm just saying that in this forum, anonymous people ask other anonymous people advice about where to have very complicated, life changing surgery and radiation, which, if you think about it, isn't really safe practice for any age person. I wouldn't want my 16/17 year old to get caught up in it.
Just saying.


Thank you for the kind words Cityview. They are much appreciated as always.

I always love good-hearted open discussions and I'm not irritated in the least. In fact, rarely do I ever get irritated after experiencing my successful Acoustic Neuroma journey. Thanks to everyone here pointing me in the right direction. As you know, it's a life changing experience. And I understand your viewpoint about people playing the role of (self-appointed) "online surgeon/psychologist/etc."

Best wishes with your AN journey as well my friend. I'm happy to finally be on the "other side" of treatment as they say.
5/19/2015 - 40% sudden hearing loss + tinnitus right ear

6/26/2015 - AN diagnosed by MRI - 14mm x 7mm + 3mm extension

8/26/2015 - WIDEX "ZEN" hearing aid for my catastrophic tinnitus

12/15/2015: 18mm x 9mm + 9mm extension (5mm AGGRESSIVE GROWTH in 5 months)

3/03/2016:   Gamma Knife - Dr. Sheehan

mcrue

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Re: Am I the youngest patient? :(
« Reply #7 on: April 26, 2016, 10:21:21 pm »
I will, however, stick to my internet security stance, as it is an area which I have formally studied as part of my degree.
....warm regards to all

That "internet security" view sounds a tad "alarmist" as some have mentioned earlier, including myself. People aren't likely hanging out on the ANA website seeking to cause problems. This is a site dedicated to support people afflicted with very rare tumors (1 out of 100,000.) Then combine that fact with the chance that a teenager might find "danger" conversing with another is ever more remote. Just my humble opinion. It doesn't make sense.
Plus, the internet wasn't even around in our college days, and you're seven years older than me. I'm interested how you were able to study "internet security" as part of your degree?

Best wishes.

p.s.- I'm feeling better! :)
5/19/2015 - 40% sudden hearing loss + tinnitus right ear

6/26/2015 - AN diagnosed by MRI - 14mm x 7mm + 3mm extension

8/26/2015 - WIDEX "ZEN" hearing aid for my catastrophic tinnitus

12/15/2015: 18mm x 9mm + 9mm extension (5mm AGGRESSIVE GROWTH in 5 months)

3/03/2016:   Gamma Knife - Dr. Sheehan

Kathleen_Mc

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Re: Am I the youngest patient? :(
« Reply #8 on: May 31, 2016, 03:21:49 am »
notsolucky:
Back to the original post.....I was 23.....there was a mother on here of a teenager( can't remember names sorry).....
it must be very frightening......are your friends/family handling it ok? I remember I lost some friends because they couldn't handle seeing me sick or got freaked out because of my condition (or whatever their problem was).....one of the problems that I ran in to that I think if I'd been older it wouldn't have happened (my friends would have been older as well and more mature)
Kathleen
1st AN surgery @ age 23, 16 hours
Loss of 7-10th nerves
mulitple "plastic" repairs to compensate for effects of 7th nerve loss
tumor regrowth, monitored for a few years then surgically removed @ age 38 (of my choice, not medically necessary yet)

tenai98

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Re: Am I the youngest patient? :(
« Reply #9 on: May 31, 2016, 10:02:34 am »
there is a young girl, age 6, who had an AN.  I'll will keep her ID confidential, but she is on my f/b, well her mom is.   
If you are on any of the f/b AN sites, you will know of her
Jo
14mmX11mmX11mm left ear
TRANSLAB 04/07/09 2cms at time of surgery
Dr. Benoit and Schramm, Ottawa Civic Campus
SSD ,some facial numbness
Baha surgery sept 22/09
residual tumor 13mmX7mmX8mm
2016 new growth.  25mmX21mmX22mm
cyberknife on June 7

tthomas

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Re: Am I the youngest patient? :(
« Reply #10 on: June 01, 2016, 09:49:37 am »
Hang in there, kid!  My son was 14 at the time of his first surgery for an AN.  He had a partial debulking, followed by Cyberknife at age 15 in Alabama.  His original tumor was about 4 cm.  After the reduction to slightly less than 3 cm, it was stable for about 3 years.  Now we are scheduled for surgery again at House in LA on June 7.  You young folks are so brave in the face of this challenge.  Joby has done fine through the years.  Yes, there are deficits.  He's totally deaf in his left ear.  The balance issues improved, but he's still a little clumsy at times.  He finished high school with honors, went to college and did ok, and has worked and lived out on his own until just recently.  Stay positive.  Know you are not the only.  There are people out there that can and will help you.  You can do this!
T