Author Topic: teenage son diagnosed  (Read 6707 times)

coloradokidd

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Re: teenage son diagnosed
« Reply #15 on: October 27, 2007, 10:14:23 pm »
Yes, we are definately including him in this decision. In fact we have told him we would support the decision he makes. Fortunately, he REALLY wants our opinion. I am leaning towards surgery, yet the radiation does still sound appealing. Thanks, for your help....

Boppie

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Re: teenage son diagnosed
« Reply #16 on: October 27, 2007, 10:17:54 pm »
It is a tough call.  What data have the doctors presented to support longevity for such a young patient having their treatment approach?  

Another question... with a person in the third, fourth, or fifth decade of life wait-and-watch would be suggested for a small tumor.  Has this been considered?  A 17 year old could go far in three or four years of higher education before the tumor would have to be addressed.

coloradokidd

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Re: teenage son diagnosed
« Reply #17 on: October 27, 2007, 10:29:15 pm »
Yes, the 3rd doctor suggested the wait and see, but his hearing is decreasing quickly and frankly my son is a basket case with all the unknown. The Dr. said he should have a normal long life with the gamma. However for every piece of data there is a contradictory data as well.

Clifton

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Re: teenage son diagnosed
« Reply #18 on: October 28, 2007, 11:11:15 pm »
coloradokidd,
i just sent you a personal message.

let me know if you need anything
2cm AN right side.
Trans-Lab DONE as of sept 14th 2007!
some facial weakness initially, right ear completely deaf.

Dr. Perry      Neuro-otologist
Dr. Bogaev   Neurologist
San Antonio, Texas
25 years of age - 4 years post op

ppearl214

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Re: teenage son diagnosed
« Reply #19 on: October 31, 2007, 11:39:45 am »
Hi kidd and welcome.

Well, as you can see, you definately have a vast array of thoughts/inputs/opinions.   Once you research, you will be able to come to terms with your own personal decision as this is highly personal.  All options are viable, including radiation (as a means to help maintain current usuable levels of hearing as well as certain forms of AN microsurgery).  As you know, no treatment option is 100% and risks involved with all choices. So, please do your homework as you have been, but most of all..... as you can see... we are all here to help!


Btw, YAY BoSox!  (sorry, had to toss it in! :D )

Again, welcome.

Phyl from Boston
"Gentlemen, I wash my hands of this weirdness", Capt Jack Sparrow - Davy Jones Locker, "Pirates of the Carribbean - At World's End"

coloradokidd

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Re: teenage son diagnosed
« Reply #20 on: October 31, 2007, 09:45:14 pm »
Ok, we finally made our decision. Our son will have Translab surgery on December 3. It was a tough decision but hopefully the right decision. So onward we go... Any tips or things I need to do beforehand?  please let me know. when will this lump in my throat go away? This is not suppose to happen to my boy. Sorry for whining, I have to be so stong and just needed to vent. Happy Halloween Everybody

trhoads

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Re: teenage son diagnosed
« Reply #21 on: November 01, 2007, 03:01:01 am »
Dear coloradokidd,

Well, I am/was 32 when I was diagnosed with my tumor.  My tumor was the same size 6mm x 4mm, however, I did not have the hearing loss that your son is experiencing.  I woke up with the room spinning.  I, too, received different opinions from different doctors, the same as your son.  One doctor stated that it was too small to do that kind of a surgery, and that radiation was the way to go.  Another doctor stated that I was too young to have the radiation and to deal with the tumor for the rest of my life, that I should just have it removed.  Yet a third doctor finally told me that I would only be rid of the vertigo if I had the surgery, so that was the way that I went.  Unfortunately, to my surprise, I woke up completely deaf in the right ear, and part of the tumor had to be left in to save my facial nerve.  But, on the lighter side, after the first 4 days post-op the dizzy spells were gone. 

It took me 6 1/2 weeks before I went back to work full time.  During that recovery phase, I did work with a physical therapist to work on my balance, but I had balance/dizzy issues from the very beginning, as opposed to the hearing loss.  I went three months later for the implant for the bone anchored hearing aide, and my 3 month healing time for that is almost over!!  The Monday after Thanksgiving, I go to get the processor hooked up and turned on, so I am pretty excited about the thought of having some kind of hearing on that side again.  I do well with one on one conversations with the SSD, however, sometimes restaurants and group gatherings are a little difficult, so I am hoping that gets better.

It is a very difficult decision to make about which treatment to choose, because there are adverse effects (complications) to each option.

Good luck to you and your son,

Tonya

sgerrard

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Re: teenage son diagnosed
« Reply #22 on: November 01, 2007, 10:10:01 pm »
Hi colarado,

When I was in California for CK radiation (by the way, after about a month I just knew that was the right choice for me),  I met a woman who revealed, after about half an hour, that she was deaf in one ear. I would not have guessed had she not told me. She went suddenly deaf about fifteen years ago, had an MRI and the whole works, but it was not an AN, and the docs just chalked it up to a virus infection. While I'm sure she would like her ear back if it were offered, she had obviously completely adapted to hearing in just one ear.

A year from now, your son will be the same way. It will all be a vague memory, with the one sided hearing as a permanent reminder. He will do just fine, and will enjoy all the experiences of a young man growing up in the world, and will no doubt make a good life for himself. As for the lump in your throat, well you are a mother, and you will be forever, so you will just have to get used to it.  :)

Best wishes to you both,

Steve
8 mm left AN June 2007,  CK at Stanford Sept 2007.
Hearing lasted a while, but left side is deaf now.
Right side is weak too. Life is quiet.

krmilmont

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Re: teenage son diagnosed
« Reply #23 on: November 07, 2007, 09:29:33 pm »
My son's tumor was diagnosed when he was 16 (he's 18 now and still recovering).  His was 5 X 7 cm - gigantic - and he had it partially removed surgically, and had the remaining tumor zapped with radiation to prevent it from further growth.  Drs all said (University of Colorado hospital did all procedures) his chances for cancer from the radiation were very small but would not show up until he was 40 or 50 years old.  That's all we know.  The damage is done, but we felt comfortable with what these drs were telling us. 

dschweder

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Re: teenage son diagnosed
« Reply #24 on: November 08, 2007, 06:20:41 pm »
Dear Kidd,

I am 37 years old and have NF2.  You are probably not familiar with this disease, but I have an AN on each side.  I was diagnosed in 1994 when I was 24 years old.  I had surgery to remove the right AN because of hearing loss.  The tumor was very small (not sure of the size, but possibly smaller than your son's) and they were able to remove the tumor without causing damage to my hearing or facial nerve.  They did remove my balance nerve, however, so a little wobbly.  I am still able to golf, play basketball, etc.  When the left side grew, they noticed that the right side was not totally gone.  They recommended radiation on that side because radiation gave me the best chance to preserve hearing.  I had gamma knife radiation done in 2001.  I just had my annual check up and the side that was radiated has not grown at all.  But, the side that I had the tumor "removed"  has grown to 16mm.  They are suggesting to have something done on this tumor again.  My sister has the same disease as well as my mother.

I guess my point is, even with surgery, there are no guarantees.  Not to scare you, but these tumors sometimes do grow back, or they do not get all of the tumor.  If I do decide to have something done with the right side, it will definitely be radiation.  If it grows, then I will have surgery. 

Just my opinion.