Author Topic: How do you tell your family?  (Read 15171 times)

Kaybo

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Re: How do you tell your family?
« Reply #30 on: January 04, 2009, 09:58:37 pm »
OK - I only had ONE opinion also and not only that, I was scheduled for surgery ONE WEEK after the intial meeting.  I didn't even know that there would be a neurosurgeon...I met him bright & early the morning of my surgery!!   ;D

I think that we have to live in the present...I was always taught to be happy where you are or you never have any peace or joy.  That doesn't mean that we can't set goals to work for, but that we are CONTENT where we are while we are getting there.  Same thing with looking back and "what ifs"...we can/could absolutely drive ourselves mad (much less NEVER know any peace or contentment) if we are always wondering what would have happened if we would have just done _____ differently. 

K   ;D
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!

JerseyGirl2

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Re: How do you tell your family?
« Reply #31 on: January 04, 2009, 10:18:00 pm »
I'll contribute to yet another gasp -- I just had one opinion (at the time of my diagnosis by the only otolaryngologist I saw), plus I had made up my mind as to where I was going for treatment before I even left his office that day and, obviously, before I had even spoken to anyone at that place! I did go home and check out the website, sent them my MRI a few days later, and set up a surgery appointment while talking with the surgeon on the phone when he called me for the "free consultation."

I knew that I wanted surgery rather than radiation and also that trying to save my hearing (which was virtually gone) was not an option. Those two factors certainly simplified the decision-making process! I was comfortable with my decision at the time, and, one year later, have never regretted it.

Catherine (JerseyGirl2)
Translab surgery and BAHA implant: House Ear Institute, Los Angeles, 1/2008
Drs. J. House, Schwartz, Wilkinson, and Stefan
BAHA Intenso, 6/2008
no facial, balance, or vision problems either before or after surgery ... just hearing loss
Monmouth County, NJ

Jim Scott

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Re: How do you tell your family?
« Reply #32 on: January 05, 2009, 04:41:58 pm »
Hi:

Me again.  :)

I did have a second opinion because the first doctor I consulted seemed indifferent to me as a patient and somewhat intimidated by the size of my tumor.  I quickly decided on that 'second' neurosurgeon, as he came highly recommended and impressed me (and my wife, who accompanied me on my consultation) with his serious attention to my concerns and his complete understanding of my case.  I had made the appointment 24 hours earlier (he made time for me) and this busy neurosurgeon must have studied my MRI and medical history the night before.  He presented me with a plan (tumor de-bulking surgery, then radiation) and kept using the phrase "if you decide to hire me" which was unusually deferential and showed a humility rare in surgeons of his caliber.  I immediately decided on this doctor - and he more than met my expectations.  A successful surgery with no real complications, uneventful FSR treatments and fairly rapid results; an immediate cessation of symptoms and, at 6 months, necrosis that has continued with every MRI.  On my last check-up, this doctor stated that I had met all of 'our' goals.  I agreed.  Obviously, I don't have any regrets over my decision but I realize it could have ended much differently.

I've long realized that life is made up of risks.  I've taken a few, as we all do.  Most have worked out well (my marriage, for instance) a few were disasters and many just had 'O.K'. results.  My decisions related to my AN were constrained by it's large size but my choice of surgeon, was, on hindsight, excellent.   I 'went with my gut' on that one (well, my wife's gut, too, as she wholeheartedly agreed with my decision, for the same reasons).  Would I have regrets if things hadn't worked out so well?  Probably - but not for long.  Forgive me for stating the obvious but we can't change the past and agonizing over decisions we've made that seemed logical at the time but didn't work out as well as we would have liked is futile, and I don't go down that road very often or for very long as it's totally unproductive.  I deal with the reality of what is, not 'what might have' been because 'what might have been' never really was.  Ambiguous?  Maybe, but it makes sense to me.  :)

Jim
4.5 cm AN diagnosed 5/06.  Retrosigmoid surgery 6/06.  Follow-up FSR completed 10/06.  Tumor shrinkage & necrosis noted on last MRI.  Life is good. 

Life is not the way it's supposed to be. It's the way it is.  The way we cope with it is what makes the difference.

leapyrtwins

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Re: How do you tell your family?
« Reply #33 on: January 05, 2009, 06:14:06 pm »
Jim -

glad marriage is working out for you - in my case, it was mostly a disaster  ::) LOL

All kidding aside, IMO there's a lot to be said for "going with your gut" which is probably why I never felt the need for more than one consult.  And it's nice to know that others on the forum only had one opinion before making their choice - I've read so many posts here about numerous opinions that I've often felt that I was "alone".

I've also felt a little "different" than the average forumite because I made my treatment decision relatively quickly and had my surgery in record time (about 6 weeks post diagnosis) - but that was before I found out about Kay and Catherine.  (HUGE gasp, here!!!)

It's always interesting to me to read the different stories about choosing treatment and choosing doctors. 

I was almost like Kay.  The only reason I met my neurosurgeon prior to my surgery was because my neurotologist told me I should.  As he pointed out, I would be a patient of both of theirs.  My thought was, if the neurosurgeon was good enough for my neurotologist, he was good enough for me - afterall, all I had to do was sleep through the surgery.   But I did as I was told (yes, unusual for me, I know)  ;) and I was glad I did.

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

JerseyGirl2

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Re: How do you tell your family?
« Reply #34 on: January 05, 2009, 09:24:55 pm »
I should say that while I reached my surgery decision in about a nano-second after my diagnosis, I didn't actually have the surgery until six months later! My local doctor and Dr. House both assured me that it would be fine to wait a while and since my only symptom was decreased hearing I didn't feel any particular urgency. My husband and I needed time to clear our calendars, and January seemed like a good time to be in southern CA rather than the Northeast, so that's how I picked the date. I was able to keep my mind pretty well occupied with other things until about a month before surgery, so that worked out fine. I'm sure that if I had been experiencing other symptoms I would have signed up for an earlier surgery date. And as I mentioned in the previous post, since I knew without any doubt whatsoever that I preferred surgery to radiation (though I certainly understand why many prefer radiation) and that translab was going to be the procedure due to the extent of my hearing loss, a lot of the decision-making process was already taken care of.

Catherine (JerseyGirl2)
Translab surgery and BAHA implant: House Ear Institute, Los Angeles, 1/2008
Drs. J. House, Schwartz, Wilkinson, and Stefan
BAHA Intenso, 6/2008
no facial, balance, or vision problems either before or after surgery ... just hearing loss
Monmouth County, NJ

lori67

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Re: How do you tell your family?
« Reply #35 on: January 05, 2009, 10:06:33 pm »
Jan,

 6 weeks from diagnosis to surgery for me too!  It would have been 5 weeks, but my doctor's wife apparently felt strongly about him being present at the birth of their child, so I gave him the week off with the understanding that he not have to do the 2am feeding the night before my surgery.  I wanted him well rested.   :)

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.

leapyrtwins

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Re: How do you tell your family?
« Reply #36 on: January 05, 2009, 11:00:33 pm »
Lori -

the more I read your posts, the more I'm convince we are twins separated at birth  ;)  :D

Okay, it's probably about time for Phyl to remind us to get back on topic, so I'll save her the time and effort and say "sorry for the hijack".

Now, back to "How do you tell your family?"  ;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

sgerrard

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Re: How do you tell your family?
« Reply #37 on: January 05, 2009, 11:36:08 pm »
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?

Michelle, if it is any consolation, I think you would have been considered borderline for radiation anyway. 2.5 cm is big enough to be a concern, and I especially think they are wary of tumors that might not be ANs. As I understand it, meningiomas are less responsive to radiation, so the uncertainty about what it was would have raised a flag. In the end, it is a roll of the dice no matter how you go.

Now, back to "How do you tell your family?"  ;D 

Jan, I think Darlene reported that she already did that about reply #19. :)

As long as we are discussing one consultation versus several, or having confidence in the choice you have made, or how we made our decisions, the discussion is relevant to Pre-Treatment Options, even if it drifts from how to tell the kids specifically. It is the chocolate and wine hijacks that are more of an issue.

So I think we're okay, unless Phyl says otherwise, in which case she's right.  ;)

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 #38 on: January 06, 2009, 06:30:04 am »
Great advice. Not only for me but for others who may have felt the same.
This is me moving forward and feeling great today! It's early ask me later how I feel after a full day of kindergarten and (hey two days ago was 7 months...too busy to remember). Life is GREAT!
Have a wonderful day my very supportive friends. Honestly I don't know how I would have done this without my loving family and friends and all of you!!!!!
Thanks for always being there!
Michelle  ;D
No whining today!  ::)
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.

lori67

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Re: How do you tell your family?
« Reply #39 on: January 06, 2009, 11:53:55 am »
Well, I chose to tell my family by plying them with chocolate and a glass of wine first.   :D

Oh wait, maybe the chocolate and wine was for me - not them....

We now return you to your regularly scheduled program..

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.

Jim Scott

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Re: How do you tell your family?
« Reply #40 on: January 06, 2009, 02:19:57 pm »
Quote
Jim -
glad marriage is working out for you - in my case, it was mostly a disaster  ::) LOL

Jan:

I'm truly sorry about that.  Frankly, I feel very blessed to have had a stable and happy marriage for close to four decades.  I give my wife the credit for putting up with me that long. ;)

Quote
All kidding aside, IMO there's a lot to be said for "going with your gut" which is probably why I never felt the need for more than one consult.  And it's nice to know that others on the forum only had one opinion before making their choice - I've read so many posts here about numerous opinions that I've often felt that I was "alone".

Well, the first 'opinion' I received was from a young neurosurgeon who (reluctantly) admitted "he hadn't seen many of these" (acoustic neuromas) and wanted to 'consult' with other doctors before taking my case.   You can imagine how quickly we thanked him for his time and headed for the exit.  I later called his office to say "never mind" and they acted as if I had insulted them.  Go figure.  Based on that unhappy and unproductive experience, I consider Dr. Goodrich - the neurosurgeon who performed my retro surgery and co-supervised my FSR treatment (with a radiation oncologist) - as my only 'real' consultation. 

Quote
I've also felt a little "different" than the average forumite because I made my treatment decision relatively quickly and had my surgery in record time (about 6 weeks post diagnosis) - but that was before I found out about Kay and Catherine.  (HUGE gasp, here!!!)

I didn't know it was a contest - but I'll play!  :)  Actually, I received my AN diagnosis (via telephone) in mid May (2006) and had my surgery on June 7th....about three weeks later.  It would have been sooner (the tumor was pressing hard on my brainstem and my doctor was very concerned at that point) but a false alarm that indicated I might have liver cancer postponed the surgery for about 10 days. A biopsy showed that I didn't have cancer.  Had that not occurred, I would have had my surgery within 2 weeks of my diagnosis instead of 3. 

Now, what did I win?  ;)

Jim
4.5 cm AN diagnosed 5/06.  Retrosigmoid surgery 6/06.  Follow-up FSR completed 10/06.  Tumor shrinkage & necrosis noted on last MRI.  Life is good. 

Life is not the way it's supposed to be. It's the way it is.  The way we cope with it is what makes the difference.

Darlene

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Re: How do you tell your family?
« Reply #41 on: January 06, 2009, 07:26:07 pm »
This discussioin has been incredibly valuable from learning that the kids are resilient and will survive this whole thing (thanks Jan and Lori) to learning that radiation is sometimes considered questionable in tumors 2c.-3cm (Gold Star for Steve) .   But most of all breathing a big sigh of relief to learn that everyone ( for a variety of reasons) didn't necessarily follow the due diligence that may have been expected and are content with their decisions.  I have been incredibly stressed that I am not doing enough research and that my lack of doing my homework will result in getting an F otherwise known as a bad outcome.  I have yet to feel in my gut exactly what is the right thing for me, but hearing other peoples experience has really helped me to relax and feel better that there is no wrong answer or decison.  As I read through the threads throughout the forum I have heard that idea repeatedly but for some reason this time with this thread it really hit home!! 

In life I have often found it is not the answer to the question but the discussion that has the real relevance for me. 

Thanks to you all,
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!

leapyrtwins

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Re: How do you tell your family?
« Reply #42 on: January 06, 2009, 09:12:41 pm »
Jim -

I didn't really realize it was a contest until you pointed it out - but yes, you definitely win.

The prize  ???  Hmm, I'm in charge of prizes for pictures/photos; Steve is in charge of prizes for contests like shortest time between diagnosis and treatment.  So, please contact Steve about your prize.  A word of caution though, if he promises you a knit hat, don't fall for it - I'm still waiting for mine  ;)

Darlene -

while Steve had the correct answer about tumor size and radiation, I knew that answer also.  I just didn't mention it because I figured you already knew that.  So I'm filing an object to his gold star on the grounds that the rest of us didn't get to prove we knew the answer also  :D

Lori -

did Steve just basically say we can post about anything even semi-related to a topic as long as we don't mention chocolate or wine?  I thought Phyl's rule was you needed to stick to the topic listed in the subject line and I was preparing myself for her slap on the hand and trying to apologize ahead of time for diverting the topic and now I find out it wasn't necessary at all.  So much for CYA - or would that be CMA  ???

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

Kaybo

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Re: How do you tell your family?
« Reply #43 on: January 06, 2009, 09:19:13 pm »
HELLO...mine was ONE week...I don't know of anyone who can beat that but satman and if he knew it was a contest, I bet he just passed out so he could win...

 ;D   ;D   ;D   ;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!

leapyrtwins

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Re: How do you tell your family?
« Reply #44 on: January 06, 2009, 09:28:40 pm »
Talk to the chairman of that prize category - Steve  :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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