Author Topic: When is it too late for an operation?  (Read 2859 times)

Greetings from Spain

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When is it too late for an operation?
« on: November 15, 2011, 04:55:52 pm »
Hello, my mother was diagnosed AN in April. The tumor was about 4 cm at the time, I can't be more precise because I don't know more details. Doctors said it had stretched the facial nerve. The tumor is pressing on the brain stem and at the time she was diagnosed she had already lost hearing on that side. My mother refused to go for surgery, which is what all doctors recommended as they thought it would not be safe to treat with radiotherapy. Now, month of November, she has difficulty in walking -cannot walk without help and has fallen several times, suffers memory loss and sometimes confusion, is always tired and therefore spends most of her time in bed. Perhaps the fact that she already has these problems would make her change her mind and consider an operation, but I do not want to suggest this if it is too late already for her. Tomorrow I will speak to one of the surgeons she saw to find out if he thinks he should see her again, to determine whether she could still undergo an operation. However, I would like to know if anyone had this experience where at the time of the operation they already could not stand or walk without help.
Also, I would like to know if there is anybody out there that has decided not to have an operation although they already needed it (different from the watch and wait option where the tumor is not that large yet) and learn if they have any useful advice, since this is the option my mother seems to prefer. Thank you!

Jim Scott

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Re: When is it too late for an operation?
« Reply #1 on: November 15, 2011, 05:21:47 pm »
Hi

I'm very sorry to learn about your mother's AN and that she is experiencing more difficulties as a result of not having removal surgery.  We are not qualified to offer 'medical' advice but it seems obvious that the tumor is growing and impacting her brain stem, which is likely the cause of her steadily deteriorating physical condition.  Again, this is a determination only a qualified doctor, experienced with ANs, can make.   However, I don't believe that doing nothing is an option.  Even a partial removal would probably offer her some relief.  Unfortunately, allowing the tumor to grow unimpeded will very likely eventually result in your mother's death.  That is unnecessary.  Please consult the doctors and try to convince your mother that she can be helped and that it is worth trying.  This is not cancer but a benign, treatable tumor.  You and your mother will be in my prayers.  Please keep us updated.  Thanks.

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.

Greetings from Spain

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Re: When is it too late for an operation?
« Reply #2 on: November 15, 2011, 05:51:55 pm »
Thank you for your prompt answer. My mother is just too scared of all that the surgery involves. She has a real phobia. You seem to believe surgery is always a good option and your opinion is very valuable because you've been there. I was undecided as to whether I should try to convince her. I will speak to the surgeon first.  Thank you so much for caring, I will keep you informed.

ombrerose4

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Re: When is it too late for an operation?
« Reply #3 on: November 15, 2011, 08:02:46 pm »
I have to agree with Jim. Even having some of the tumor removed would probably alleviate some of your mom's symptoms. Please go with her to doctor and see if maybe she will change her mind.
Retrosigmoid 9/24/09
AN 2.4+ cm left side
Mount Sinai Hospital, NYC (Dr. Bederson and Dr. Choe)
BAHA surgery 1/4/2010

rvb755

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Re: When is it too late for an operation?
« Reply #4 on: November 15, 2011, 08:52:08 pm »
I did not have problems with walking or memory loss as your mother is having but my tumor had grown to 5 cm before I was diagnosed.  My hearing was mostly gone on the tumor side as well.  I had surgery about 5 weeks after diagnosis and have recovered very well.  Back to work in 4 weeks and no facial nerve damage.  Please encourage your mother that her tumor is treatable with surgery.

Rick
3.2cm x 5.0cm x 3.3cm Left side AN
Translab with Dr. Friedman/Dr. Schwartz at HEI
on 8/24/2011
100% tumor removal, no facial nerve damage, SSD

TP

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Re: When is it too late for an operation?
« Reply #5 on: November 17, 2011, 07:21:26 am »
I am so sorry to hear about your mom. I had a large AN on my brain stem and noticed my balance was affected. I only started getting head aches about a month prior to my surgery. My dr advised me that I schedule my surgery immediately upon being diagnosed (diagnosed middle of May in 2006 and surgery performed 6/5/06)  I asked why and he said I could stroke due to where my AN was and the size of the tumor. I scheduled my surgery that day!
4+cmm left retromastoid of cerebellopontine angle tumor removed 6/5/06; Dr. Eric Gabriel, St. Vincents, Jacksonville, FL
Left ear hearing loss, left eye gold weight, facial paralysis; 48 year old female. Dr. Khuddas - my hero - corrected my double vision

Chances3

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Re: When is it too late for an operation?
« Reply #6 on: November 17, 2011, 12:34:13 pm »
Dear Spain,

Very sorry to hear what your mom is going through.  You never mentioned her age.  If she is very old, she might be very frightened of pulling through such an operation.  Jim gave some sound advice - unfortunately doing nothing is worse.  If she reads English perhaps she can see all the posts people put on here.  Many of us have had surgery, and we're still here doing fine.  I'm 55 years old, I was worried my age was against me when I considered surgery.  I had it done, I'm back to work, and living a somewhat normal life again.  I do have problems with balance, but I am much better and hope to continue to improve.  My tumor is out of my head !! 
Good luck with mom.

God Bless.