Teens with AN -did you have problems with irrationality before or after surgery?

[krmilmont]

My son was diagnosed with a 5 X 7 cm tumor when he was just 16 years old.  The tumor was pressing on his brain stem so severly that spinal fluid had built up in the center of his brain.  A 16 hour surgery removed much of the tumor, the remaining tumor was radiated 9 months later to halt growth.  It's been a year an a half since the surgery and 9 months since the radiation.  He still is unable to move his face, tho the facial nerve is intact, just worn out, say the docs.

It's been a long road, to say the least.  He graduated from HS thru all of this, but now we have discovered that he made some very irrational decisions a few months before the surgery and continued to make them until they were discovered just recently. 

Has anyone else ever had this problem?  We've read some of these forums that refer to "foggy brains."  Could this also cause a person to make poor choices because of the trauma to the brain?

[Boppie]

Foggy brain is a word we use around here.  The truama of AN treatment is extremely difficult for a very young person.   It sounds like you need to keep in touch with the neurologist and a personal counselor in trauma psychology for adolescents.

[tony]

Sorry to hear of the little ones problems
there two quite different issues

Type A is the "forgotten to switch the light off
- lock the car - close the sunroof - or cant find the wallet etc etc"
These are short term memory overload type issues
which many on this list would understand
Normal for the condition - and in time get better

Type B is more like "Post Traumatic Stress Type Issues
- or Post OP deppression etc etc"
an AN has a rather uncomfortable way of reminding
us all that we are not immortal
- he was very young to deal with all of this

My suggestion is have a think about what you saw.
B to some degree, may require assistance
from qualified specialists
A can be helped with Cognitive therapy
- still specialists but a quite different area
The course depends a bit on the exact cause ?

Best Regards
Tony

[Joef]

Don't give up on the face movement yet! ... I'm 2 years soon ... and I'm still seeing some improvement ... (and I had almost none the first year!  ) 

[krmilmont]

Yes, this was a mistake, my son's tumor was 5X7 centimeters, not millimeters.  So, it was a huge one and had been there for a long while before it was discovered.,...

[pattibobatti]

Goodmorning,

My goodness, you and your son have been through so much.  I don't know how well I would be doing if my child had to have the tumor instead of me.  I hope that things get easier and easier for you both.

I was reading your post and wondered if your son is your first or only child.  I have 3 adult children and my first son made bad choices I think daily!! If the teen years are a new thing for you, it can be overwhelming at times.  And to add a brain tumor with all its problems to the mix, I would be very surprised if he wasn't making bad choices sometimes.

Bruce is correct though, you know your child the best.  If you really think he is in trouble I would not hesitate to find help for him.

I will be looking for your posts and pray he will be doing better.

Pattibobatti

[Jim Scott]

Hi, krmilmont:

Although no parent wants to have their child go through the ordeals of having an AN tumor, surgery and radiation, you and your son seem to have weathered the storm.  Well, almost.

I won't pretend to have anything close to a definitive answer to your original question.  Only a therapist who spends time with your son might help you both find an answer.  While the 'irrational decisions' you refer to could be attributed to the tumor and all the emotional issues AN patients often suffer during the pre and post diagnosis stage as well as after surgery and even radiation, as a teen, he could also be simply 'acting out' based on other issues, as teenagers are known to do.  His behavior might also stem from normal teenage mistakes (born of inexperience) combined with the extra stress of the AN 'baggage'.  I'm not too sure if there are any purely physical brain-related issues involved with an acoustic neuroma tumor - even a large one - that directly or indirectly impact decision-making.  However, I'm not a physician, although my wife and I did raise a now-adult son who had a relatively drama-free adolescence. 

I didn't become irrational but I did become grouchy after my diagnosis and especially after my surgery.  I simply hated being 'watched' (by my infinitely patient spouse) and being considered 'sick', when I felt pretty good and recovered quickly.  However, I have almost 50 years on your son, so I doubt my experience is germane to his situation.  However, a few of the parental posters on this forum have 18-year-old children that were diagnosed with large AN tumors (and suffered many complications - but recovered) who might respond to your question with more relative experiences.  Lets see.

I hope your son continues to recover and that the days of his making irrational decisions are now finished.

Jim

[Kathleen_Mc]

krmilmont:
My orginal tumor was finally diagnosed at age 23, looking back I can certainly see I made some "choices" in the two years prior and for about 6 years after that were not what I see as "rationale". They were huge mistakes and I certainly look back and say "what were you thinking"? My parents were aware that I was making poor choices, they tried to talk to me but I wouldn't listen.....I became much different from what I was and what I am now.
Thank heaven I didn't do anything to ruin my future in a way that was not repairable.
There is a chemical change within the brain that can cause what would be seen as personality changes, also mood changes and then the surgery itself will also mess one's head up psychologically and chemically.
I was treated for post traumatic stress disorder but not until I looked for the help, nobody professionally saw past the chemical side of things. I have been on anti-depressants that also help with anxiety basically since but there has been some times when I have been off them (preganancy, beast feeding and presuure of a spouce that I don't need them). I don't know that I will ever go off them again, I feel terrible when I don't take them.
During the therapy sessions I dealth with the anger of being misdiagnosed for so many years (and treated as if I was a Rx abuser), anger at the doctor's who didn't listen, the fear of death (was awake on life support etc.), the grief of facial changes and general loss of quality of life, the seclusion of hearing impirment etc. It really helped but your son has to be ready.
I don't think the recovery period from this ever ends, at least not psychologically.....this experience at a young age certainly shaped who I am today....for the best and the worst.
Kathleen

[chrissmom]

Hi, I'm not sure what I can add to this conversation because everyone else has made some really good points.  I am like you, the mother of a son who had acoustic neuroma surgery last year.  He had a whopper of a tumor too.  It was 5.3 x 4.0 cm. He had hydocephalus too and many problems related to the pressure on the brain stem.  He is doing so much better now but he still  has facial paralysis.

He had anastomosis surgery in October and his face is beginning to show improvement.  The upper part of the facial nerve is regenerating by itself and we see eyebrow movement there.  We travel to the facial nerve center in Pittsburgh every month and he does daily exercises.  I don't think the area around  his mouth would have shown this kind of improvement without the reanimation surgery (anastomosis).  As for the poor decision- making..he made a few but that was totally attributable to his age and immaturity.  He never suffered any cognitive problems related to the AN.  However, he is sharper and more alert now than ever and he is planning to go back to college in 2 weeks !  When I look at him, I realize how hard he has worked to get this far.  He has learned to walk again and now he runs.  He has been fishing and boating all summer.  Believe me, that is the ultimate test of the resolution of your balance problem!

[Clifton]

Hi,

I am 21 years old right now, not quite a teen but still young. I have been diagnosed with AN as of 3 or 4 days ago and if anything its helped me to grow up. I was already pretty mature i assume for my age...i work at a car dealership. Im one of the top salesman here and i have great success for my age but i still partied and stuff.
This experience has taught me alot about myself and the people around me and so im just looking forward to recovering after this thing is out of my head! haha

i guess its just a person to person thing how people react to it. but just be supportive, which im sure you are, and everything will be okay.

[Taylor]

Yeah i was a very bad kid before i was diagnosed. lol

and i still am in a way just not as bad.

DEFINITELY.

My neurosurgeon said it's normal to not think things through and to do whatever you please before you are diagnosed.

Stontanous maybe.

Of course it could be the age playing a role in it too.

[Palace]

Helpful reminder to all:

http://www.healthsystem.virginia.edu/uvahealth/peds_neuro/tumors.cfm



We are in this together.........



Palace

[Dfcman]

Its funny cause I kinda use that as an excuse why I did so many stupid things.  It def interferes with cognitive and can affect many fine motor abilities.  It really affected m,y short term memory both a month or two pre-op and a little post-op.  It def matures you.

Chris