Author Topic: My Father...  (Read 4906 times)

crowderp

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My Father...
« on: June 15, 2006, 10:55:53 am »
My father was diagnosed with a 9cm AN May 2003.  We choose to have radiation to stop the growth.  This was completed in August of 2003.  My father went yesterday to have a CAT scan.  We received bad news.  His tumor has now grown to a 13.87mm - almost 1/2 inch.  It is getting closer to the brain.  Our doctor wanted to talk it over with another doctor but the only option will most likely be surgery.  I have a few questions...
1.  Will surgery be more difficult due to the radiation?
2.  Will my father lose all his earing in the left ear - location of the AN?
3.  Why did the radiation not work?
4.  Should we be concerned with the surgery?  My father is 65 and has been in poor health ever since the radiation.
5.  What will happen if you don't have surgery?  Will the tumor continue to grow and become life threatening?
6.  What is the recovery time from surgery?

We all thought the radiation would stop the growth and wouldn't have any more worries - Boy were we wrong.  We are new to all of this so any information and/or advice would be so welcomed.
Thanks.

ppearl214

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Re: My Father...
« Reply #1 on: June 15, 2006, 11:32:24 am »
Hi Crowderp and welcome.  I'm sorry to hear your dad is having such a tough time, but let me ask you this to try to help you out.

1. what kind of radio-surgery did he have?  Novalis/gamma knife/cyberknife? Very important to know
2. In what ways has your dad been in poor health since his treatment? what symptoms?
3. Where was his treatments done?

We're going to help you as best as we can... we are all in this together! Please hang in there!

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

crowderp

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Re: My Father...
« Reply #2 on: June 15, 2006, 11:56:44 am »
Thank you Phyllis!!  I appreciate your help.

1. What kind of radio-surgery did he have?  gamma knife
2. In what ways has your dad been in poor health since his treatment? what symptoms? Only 30% hearing in both hears, sickness to his stomach (diarrhea and constipation), joint pain.  the last two may or may not be associated with the radiation but my father was a go getter until the radiation.  He never stayed inside the house.  We can't get him out now.  His stomach and joints hurt so bad and can't get out of bed at times.

3. Where was his treatments done?  Emory Healthcare in Atlanta, GA

Thank you again for your help.
Pam

Joef

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Re: My Father...
« Reply #3 on: June 15, 2006, 12:05:39 pm »
>>My father was diagnosed with a 9cm AN May 2003.
I think you meant "mm" not "cm" !! , I think no Dr. would do radiation alone on a tumor that big...

>> Will surgery be more difficult due to the radiation?
age old question, that depends who you ask! .. for some that has NOT done it before ...yes.. but for someone that has..  its just different

>>Will my father lose all his hearing in the left ear - location of the AN?
there is a good chance, again, that depends who you ask .. he/you might not believe it now, but losing hearing in one ear is more of annoyance than a disability

>> Why did the radiation not work?
No one knows...

>> Should we be concerned with the surgery?  My father is 65 and has been in poor health ever since the radiation.
No more than any other surgery at that age, or any age !

>> What will happen if you don't have surgery?  Will the tumor continue to grow and become life threatening?
again, that hard to say, if it keeps getting bigger, yes it can become life threatening

>>What is the recovery time from surgery?
It could be one week, it could a few years ... there are stages of recovery, personally I felt "myself" after 3 months, really good after 6 months .. but I'm 10 months now and still have facial and dry eye issues, but otherwise good
4 cm AN/w BAHA Surgery @House Ear Clinic 08/09/05
Dr. Brackmann, Dr. Hitselberger, Dr. Stefan and Dr. Joni Doherty
1.7 Gram Gold Eye weight surgery on 6/8/07 Milford,CT Hospital

ppearl214

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Re: My Father...
« Reply #4 on: June 15, 2006, 12:06:01 pm »
Hi Pam.

Your dad is/was in my stomping grounds. My fam still in Northside of Atlanta and I did my high school/some college there!  Nothin' like a little hotlanta to make your day! :)

Ok, at Emory, we know he was in terrific care. Now, again, this is only my opinion and others may chime in with something different but here goes.

he had his treatment in 2003, so he's 3 yrs out. Since he had GammaKnife, we do know that there is a possibility that accuracy can be a major factor. We dont' know if the metal headframe was calibrated just prior to his treatment. Also, as GK is a one-dose process, it's a hit or miss... so, not sure if the radiation hit is well enough (the core) to zap that sucker.

Now, he may be eligable for Cyberknife up at Kennestone Hospital (my sister, who does clinical trials in Atlanta, told me Kennestone just got their CK unit). Since CK is fractionated, it would be easier on healthy tissue around the growth and easier on your dad.  If he/the family have the mindset of "at this point, just get the darn thing out of my head", then.. there are many surgical processes available in Atlanta (yes, at Emory, as one) or around the country.

I don't know if your dad has visited a GI specialist re: his stomach. I, for one, would doubt that the GK or AN would have any impact on his stomach/digestive tract.  I would consult with a GI dr to have a few tests done to see.

My understanding is that surgery is usually recommended for those that are older in order to preserve what hearing is there. I do know of some that have the attitude of "let's go non-invasive first, and if that doesn't work, then go invasive".  No decision is right or wrong, but you are doing the right thing by researching, asking, researching and asking some more.

Pam, again, this is just my 2 cents/pence and take is how you want. Maybe a bit of "food for thought", or a bit helpful, but you've certainly come to the right place.  BTW, the drinks here are watered down.. best to stick with the beer at $3 Cafe in Buckhead! :)

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

ppearl214

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Re: My Father...
« Reply #5 on: June 15, 2006, 01:52:27 pm »
With regard to this:  Since he had GammaKnife, we do know that there is a possibility that accuracy can be a major factor. We dont' know if the metal headframe was calibrated just prior to his treatment. Also, as GK is a one-dose process, it's a hit or miss... so, not sure if the radiation hit is well enough (the core) to zap that sucker.

Phyl, for the sake of any newbies on this site who may be considering radiation, I would like to point out that I think the above comment is pure speculation on your part. Frankly, I think you're going out on a limb here, but if you have credible sources to back up that comment, please share them. I know there may be some slight differences in accuracy, although Dr. Medbury on the Ck site has stated repeatedly that he doesn't consider the difference to be significant.

agreed, and as noted in my post, "this is only my opinion and others may chime in with something different".  I am aware of what Dr. Medbury has shared about GK and CK and yes, both are exceptionally good methods of AN radio-treatments. I do not sway one way or another. The question was asked "3.  Why did the radiation not work?" and as I stated, I just gave an opinon, nothing more. There have been numerous posts here on the ANA site about the calibration of headframes and questions to ask potential GK dr's for those inquiring about GK.  For me to dig through the archives here right now is not possible as I am at work but more than happy to dig for the threads when I get home from work.

Very true that there are slight accuracy differences but one note of the accuracy differences has been the headframe calibration. I will look for the source later when I have time. Other than that, my post, as originally noted, was based on opinion, based on the initial questions asked. Nothing more.

Thanks becknell for sharing this.. and I hope you are feeling well. Truly! :)
Phyl
"Gentlemen, I wash my hands of this weirdness", Capt Jack Sparrow - Davy Jones Locker, "Pirates of the Carribbean - At World's End"

Larry

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Re: My Father...
« Reply #6 on: June 15, 2006, 06:51:28 pm »
Hi Pam,

I had my AN surgically removed almost 4 years ago now and about a year ago, it grew back. It is currently around 15mm. My surgeon, neurologist and radiosurgeon 9or whatever they are called) all advise to do nothing. My only symptom is headaches and thats a surgery outcome. I am in watch and wait mode but will likely have gamma knife when and if it grows any more.

If the regrowth is not causing any symptoms and based on advice from your neurologist, it won't for a little while yet; that is, there is still room for it to grow without hitting the brain stem too much, then watch and wait may be an option. It may not grow any more.

I dare say that surgery options would mean trans lab - which would result in total hearing loss - and all the associated risks of surgery.

Another bout of radiation as suggested by many above may be the way to go.


Laz
2.0cm AN removed Nov 2002.
Dr Chang St Vincents, Sydney
Australia. Regrowth discovered
Nov 2005. Watch and wait until 2010 when I had radiotherapy. 20% shrinkage and no change since - You beauty
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russ

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Re: My Father...
« Reply #7 on: June 15, 2006, 11:23:54 pm »
 Hello;

  I've read some stories like this before. Seems there's a good chance your Father will feel better once the surgery is successfully performed.
  The hearing retenance is unpredictable but I would guess toward the unlikely end.
  The radiation type matters naught as other irradiation types than GK were created to capture a market share. Others may disagree with this but that's OK. All are accurate and tissue sparing.
  Why did it fail? Unknown...
  If other health issues cause Dad to feel unwell are apparent post op, then they will be delt with.
  Keep the faith, okay? You need be strong for both Father and yourself!

  Russ

ppearl214

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Re: My Father...
« Reply #8 on: June 16, 2006, 05:31:51 am »
Hi all  and becknell/Jennifer:

Jennifer, I did find this post by Mark re: Wakeforest and Dr. Medbery's discussion.. here's the link for reference.. I believe this is the one you are referencing?

http://anausa.org/forum/index.php?PHPSESSID=93b7ee3103e55beb95a88a0ea8a4bc70&topic=921.0

In any case,  crowderp, your dad certainly needs medical attention and I have faith in you all to do what is best for your dad, regardless if radio-surgery, micro-surgery, etc.  Please know I'm thinking of you all and here's hoping you all are hanging in there.

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

Captain Deb

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Re: My Father...
« Reply #9 on: June 16, 2006, 01:25:25 pm »
Living in the South, I actually know what crowder peas are!  Where do you live?
Capt Deb
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Chronic post-op headaches
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Larry

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Re: My Father...
« Reply #10 on: June 19, 2006, 12:21:54 am »
Crowder peas? do they go into a pie floater!
2.0cm AN removed Nov 2002.
Dr Chang St Vincents, Sydney
Australia. Regrowth discovered
Nov 2005. Watch and wait until 2010 when I had radiotherapy. 20% shrinkage and no change since - You beauty
Chronologer of the PBW
http://www.frappr.com/laz

crowderp

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Re: My Father...
« Reply #11 on: June 27, 2006, 12:46:13 pm »
Athnes, GA - native!! 

ppearl214

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Re: My Father...
« Reply #12 on: June 27, 2006, 01:47:06 pm »
Athnes, GA - native!! 

GO DAWGS!!!! (nephew is a grad of UGA.. fam lived in northside Atlanta... as did I for 11 years!)
"Gentlemen, I wash my hands of this weirdness", Capt Jack Sparrow - Davy Jones Locker, "Pirates of the Carribbean - At World's End"