Author Topic: How do you tell your family?  (Read 14844 times)

leapyrtwins

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Re: How do you tell your family?
« Reply #15 on: December 14, 2008, 05:22:47 pm »
I thought I read somewhere that with radiation you eventually have to have it removed anyway?   

Usually not. Only about 2% regrow and require surgery, depending a little on which kind of radiation treatmemt.


Usually the same goes for surgical removal of an AN.   Once it's removed chances of regrowth are generally 1-2%.

Jan
Retrosig 5/31/07 Drs. Battista & Kazan (Hinsdale, Illinois)
Left AN 3.0 cm (1.5 cm @ diagnosis 6 wks prior) SSD. BAHA implant 3/4/08 (Dr. Battista) Divino 6/4/08  BP100 4/2010 BAHA 5 8/2015

I don't actually "make" trouble..just kind of attract it, fine tune it, and apply it in new and exciting ways

Tisha

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Re: How do you tell your family?
« Reply #16 on: December 14, 2008, 06:32:10 pm »
Darlene,

I found out 7 weeks about that I have a 1.6cm AN.  My kids are 15 and 12.  I basically told them I have a growth on my balancing nerve, which is pressing my hearing nerve and that's why I've had such a hard time hearing them lately.  They didn't seem too concerned because I was very matter of fact and no dramatic.  I haven't told them yet about the radiation I plan on doing, but will once everything is worked out.  They hear and DH and I discuss it.  I put on a brave face with them for their sake.  I went to pieces with DH and my parents when I first found out, but I 'm past that now.  I told my very very good friends and am now being to tell just "friends".  My Very good friends have listened to my fears and concerns and all the awful things that can happen.  My "friends" just get the "benign tumor, going to zap it with radiation, will you pass the wine bottle please" attitude. 

I do have a question for you since your AN is even smaller than mine.  If hearing preservation is a major concern, which it is very much for me as my other ear has a hearing aid in it already, why don't you consider cyberknife?  It seems you have that option, where others don't.  Almost 100% non-growth of tumor, almost no facial issues and 80% chance of hearing preservation.  There is so much information here to research.

I'm sorry you had to find this board like I did.  However, you couldn't have found anyplace on the web better for information, and the people here are the absolute best.  Good luck with your journey.

Tisha
1.7 x 1.0 x .9 cm (diagnosed Oct 2008)
1.8 x 1.2 x 1.1 cm  (July 2010-swelling)
1.5 x .9 x .9 cm  (Mar 2013 - 5 yr MRI)
Cyberknife at Stanford, week of 1/12/09 -  Drs. Chang and Soltys

Darlene

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Re: How do you tell your family?
« Reply #17 on: December 16, 2008, 11:46:08 am »
Thanks again for all the information.

 I am going to do more research on the Cyber knife.  I live in Northern New Jersey,  does anyone have any recommendations on NeuroSurgeons or places to get Cyber knife?   

I really appreciate all your help! 

Darlene
DX: 12/6/08
1.4cm intracanicular -Middle Fossa Surgery on 7/1/09 @ NYU. Hearing preserved and speech discrimination has actually gotten better!!   Temporary Facial Paralysis- showing improvement.  1yr post-op hearing test- same 96% speech recognition- yeah!

Tisha

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Re: How do you tell your family?
« Reply #18 on: December 16, 2008, 03:07:39 pm »
Darlene,

Go to cyberknife.com.  It's a cyberknife information web, with a message forum for patients.  2 doctors give their time to answer questions.  I also believe there is a list, by state, of cyberknife centers.  I do think it's worth your while to investigate this option further.  Good luck!

Tisha
1.7 x 1.0 x .9 cm (diagnosed Oct 2008)
1.8 x 1.2 x 1.1 cm  (July 2010-swelling)
1.5 x .9 x .9 cm  (Mar 2013 - 5 yr MRI)
Cyberknife at Stanford, week of 1/12/09 -  Drs. Chang and Soltys

Darlene

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Re: How do you tell your family?
« Reply #19 on: January 03, 2009, 11:20:08 pm »
Just a follow up, I told my family in the method I was advised and it worked beautifully.  My kids know but I was so matter a fact about it that I think they are taking it in stride.  Besides asking if it meant I was going to die,(which I reassured them I was not) my hearing difficulties are an ongoing joke for our family.  Even my mom and sisters have been able to be calm and collected about it. 

Thank you all very much!!!  Often, when I am stressed out I say the totally wrong thing and your experience and thoughtfullness was exactly what I needed to handle this without overly upsetting my family. 

greatly appreciative,
Darlene

ps.  One benefit of my new diagnosis is that now my 15 yr old son willing turns off his"loud rock" radio station while I am driving  him and his friends around!  No more sullen faces- just compliance!   A blessing but probably not worth having an AN to obtain.   LOL :D
DX: 12/6/08
1.4cm intracanicular -Middle Fossa Surgery on 7/1/09 @ NYU. Hearing preserved and speech discrimination has actually gotten better!!   Temporary Facial Paralysis- showing improvement.  1yr post-op hearing test- same 96% speech recognition- yeah!

lori67

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Re: How do you tell your family?
« Reply #20 on: January 03, 2009, 11:39:59 pm »
Darlene,

I'm glad the breaking of the news went well.  I tend to approach things like that very matter of factly too.  I've found that as long as I'm not freaking out about it, my family won't either - especially my kids.

I'm coming up on my 2 year anniversary of my surgery next month, and just the other day, my sister yelled at me for being so calm when I told her.  She's a worrier anyway, so she worried enough even after I downplayed the whole thing.  She said she's heard people more emotional about having to go in to have their teeth cleaned.  I really didn't want my mom to worry, so the whole family had to be matter of fact when speaking to her.  It wasn't until afterwards when she saw pictures of my stapled together head and my droopy face that she said "Oh, I didn't know your surgery was so involved!".  Well, yeah a bit involved - considering it was my head!!

I'm sorry you couldn't have found an easier way to get your son to turn down the music!  I guess you do whatever it takes!   :D

And I'm from Northern Jersey originally too!  I was feeling quite homesick a few weeks ago, even though I haven't lived there since 1991, but then I heard how much snow you guys got and I got over my homesickness quickly!   :D

Lori
Right 3cm AN diagnosed 1/2007.  Translab resection 2/20/07 by Dr. David Kaylie and Dr. Karl Hampf at Baptist Hospital in Nashville.  R side deafness, facial nerve paralysis.  Tarsorraphy and tear duct cauterization 5/2007.  BAHA implant 11/8/07. 7-12 nerve jump 9/26/08.

Kaybo

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Re: How do you tell your family?
« Reply #21 on: January 03, 2009, 11:58:58 pm »
Lori~
From what you have said, it was probably YOU who was more emotional about going to the dentist... ;D

K
Translab 12/95@Houston Methodist(Baylor College of Medicine)for "HUGE" tumor-no size specified
25 yrs then-14 hour surgery-stroke
12/7 Graft 1/97
Gold Weight x 5
SSD
Facial Paralysis-R(no movement or feelings in face,mouth,eye)
T3-3/08
Great life!

lori67

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Re: How do you tell your family?
« Reply #22 on: January 04, 2009, 11:05:03 am »
Kay, you are absolutely right!  At least I got to sleep through the brain surgery!  I might look kinda wimpy if I ask for general anaesthesia to have my teeth cleaned!   ;D

Lori
Right 3cm AN diagnosed 1/2007.  Translab resection 2/20/07 by Dr. David Kaylie and Dr. Karl Hampf at Baptist Hospital in Nashville.  R side deafness, facial nerve paralysis.  Tarsorraphy and tear duct cauterization 5/2007.  BAHA implant 11/8/07. 7-12 nerve jump 9/26/08.

mimoore

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Re: How do you tell your family?
« Reply #23 on: January 04, 2009, 02:54:42 pm »
When is the size of the tumour a factor in radiation? CK is good for tumours up to ?
Michelle  ;D
Retrosigmond surgery on June 4th, 2008 for an AN. 100% hearing loss and facial paralysis (was not prepared for facial paralysis). Size: 2.3 cm, 2.1 cm, 1.8 cm. some tumour remains along facial nerve. Pray for no regrowth. Misdiagnosed for 10 yrs.

sgerrard

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Re: How do you tell your family?
« Reply #24 on: January 04, 2009, 03:42:45 pm »
When is the size of the tumour a factor in radiation? CK is good for tumours up to ?

(waving hand) Oh, call on me!  ;D

I think in most cases, below 2 cm is considered fine, and above 3 cm it is usually not considered. Between 2 cm and 3 cm the debate is on, and it depends very much on location, how close the AN is to the brain stem, and whether it is pressing into the brain stem. The issues are what the effect of swelling would be during the 12 months following treatment, and whether there is risk of excess radiation hitting the brain stem.

Do I get a gold star?

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.

mimoore

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Re: How do you tell your family?
« Reply #25 on: January 04, 2009, 06:27:38 pm »
Thanks Steve,

I asked because I live in Canada and worked hard (10 yrs) to get a diagnosis for my symptoms. There is quite a process here... you need a referal to a specialist (I saw four different specialist and finally got an MRI) and the wait is, at times very long. Getting a second opinion is often challenging and lengthy. There are many benefits to our health care system but some negatives as well.

So to make a long story short, it is not easy to get second or third opinions.
I went from a neurosurgeon who said "That white blob is a tumour and it needs to be removed" right to a neurosurgeon whom I felt comfortable. I felt a strong pull to have it "removed" instead of radiation. That was that booked and in a month had surgery. Yes I did my research but did not get another opinion.. I hear the gasp from some of you. I should tell you that I did not know if  it was an acoustic neuroma or a mengioma and did not find this site until after my surgery when they did tell me it was a VS.

Then when I read stories of others who have had radiation and things are successful I question my choice of surgery. Did I do the right thing? What if I would have gone to the States? Or tried GK or CK?

I know that what's done is done and many people have surgery without complications and I am doing so well now so why question. If I could go back would I chose surgery again...yes I know I would but still the questions are there.

Does that make any sense?
Michelle  ;D
« Last Edit: January 04, 2009, 06:30:41 pm by mimoore »
Retrosigmond surgery on June 4th, 2008 for an AN. 100% hearing loss and facial paralysis (was not prepared for facial paralysis). Size: 2.3 cm, 2.1 cm, 1.8 cm. some tumour remains along facial nerve. Pray for no regrowth. Misdiagnosed for 10 yrs.

leapyrtwins

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Re: How do you tell your family?
« Reply #26 on: January 04, 2009, 06:27:56 pm »
Steve -

since Phyl isn't currently around, I'll hand you the gold star  ;D

From my experience, your answer is absolutely correct.  Well done!

Darlene -

I'm glad to hear that the breaking of "the news" to your family went well.  As others have said, children usually take your lead on things.  If you aren't freaked out, they usually aren't either. 

Once I told my children that I wouldn't die, they just went about their lives as if everything was perfectly normal.  In fact, to this day, they still don't see what the big deal is about brain surgery  :P  In a way I'm thankful for that, because it means this wasn't as traumatic an event in their lives as I anticipated.

Jan
Retrosig 5/31/07 Drs. Battista & Kazan (Hinsdale, Illinois)
Left AN 3.0 cm (1.5 cm @ diagnosis 6 wks prior) SSD. BAHA implant 3/4/08 (Dr. Battista) Divino 6/4/08  BP100 4/2010 BAHA 5 8/2015

I don't actually "make" trouble..just kind of attract it, fine tune it, and apply it in new and exciting ways

lori67

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Re: How do you tell your family?
« Reply #27 on: January 04, 2009, 07:12:02 pm »
Michelle,

Yeah, it made sense after the second time I read it!   :D

You're a smart lady and you should just trust that you did the right thing.  I'm sure we could all second guess many things in our lives, but it wouldn't change what's already done.  There's no way to know if radiation would have been effective and without complications in your case, just as there were no real guarantees with surgery.   If it makes you feel any better, I didn't get a second opinion either.(more gasps from the peanut gallery! ). I had complete trust in my primary doctor who diagnosed me and complete trust in the surgeon he recommended to do the surgery.  He gave me all of the info I needed on all of my options and did not seem to be pushing for one or the other, so I felt I had enough information to make a decision.

Jan, the older kids are funny, aren't they.  My son, who is the worrier in the family to begin with, said "Only you would be sitting there having your head cut open and still worry about us going out with clothes that don't match or socks that aren't clean!".  Apparently he wasn't too traumatized by the whole thing either.

Lori
Right 3cm AN diagnosed 1/2007.  Translab resection 2/20/07 by Dr. David Kaylie and Dr. Karl Hampf at Baptist Hospital in Nashville.  R side deafness, facial nerve paralysis.  Tarsorraphy and tear duct cauterization 5/2007.  BAHA implant 11/8/07. 7-12 nerve jump 9/26/08.

QRM

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Re: How do you tell your family?
« Reply #28 on: January 04, 2009, 08:28:05 pm »
Its not just the size I found out that my spud was also cystic, which means its not all solid and has area of goo within. There is an on going debate, Yeap another one, on the increase chances of facial paralysis due to a cystic tumour, the jury is still out on whether or not it makes a difference to the surgical outcome.
2.5 cm x 1.1 cm AN 30 Oct 08  Singapore Gleneagles Hosp.
Translab on  29 Jan 09 Dr. Friedman & Dr. Schwartz of HEI
Surgery a success!! had wonky head for a while and odd tastes
Everyday things are improving and getting back to normal.

leapyrtwins

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Re: How do you tell your family?
« Reply #29 on: January 04, 2009, 09:46:03 pm »
Michelle -

like Lori - and you - I only had one opinion also - third gasp!!!  :o

My ENT referred me to my neurotologist and I knew right away that he was the "one for me" - so to speak.  Although I had a difficult time deciding between surgery and radiation, once I chose surgery I didn't second guess myself - I figured it was pointless.

Like Lori said, there are no guarantees with either radiation or surgery; you are a smart lady; and you should trust that you did the right thing.  Life is full of question marks and regrets.  You do what you think is right at the time, and as Lori also said, you can't change what's already been done. 

Lori -

it's amazing the things that you think will traumatize your kids, and then find out later no impression was made on them.  Last year I felt just horrible because despite my weekly promise throughout the month of December to buy a Christmas tree I just never got around to it.  I thought I was a terrible parent; that my kids were scarred for life.

This year I told my kids that because we had no tree last year I was definitely buying one this Christmas.  They both said "we didn't have a tree last year???"  At that point, I stopped feeling horrible  :D  Despite the same promise this December, I never did get around to buying a tree; so after Christmas I took my kids' advice and bought a fake one; guess I'll have no excuse for Christmas of 2009  ;D

Jan

Retrosig 5/31/07 Drs. Battista & Kazan (Hinsdale, Illinois)
Left AN 3.0 cm (1.5 cm @ diagnosis 6 wks prior) SSD. BAHA implant 3/4/08 (Dr. Battista) Divino 6/4/08  BP100 4/2010 BAHA 5 8/2015

I don't actually "make" trouble..just kind of attract it, fine tune it, and apply it in new and exciting ways

 


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