Author Topic: Is Surgery after Radiation more difficult?  (Read 13253 times)

leapyrtwins

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Re: Is Surgery after Radiation more difficult?
« Reply #30 on: February 24, 2008, 09:33:38 am »
Maybe I will just make do with what I have, I seemed to be getting pretty used to it now.
Steve

Steve -

I wonder if that's because you have partial hearing loss as opposed to total hearing loss.  Does that make a difference   ???

It's good to hear (no pun intended) that you are used to your hearing loss.  I totally hate mine, which I guess is what is leading me to the BAHA.  Not hearing anything from one ear makes me feel VERY old   :(  Plus, I'm tired of saying "What?"  It's gotten to the point where my children get tired of repeatingly themselves, so they just give up and don't tell me what they originally said, which is very frustrating for me.

Here's hoping that your MRI follows "Plan A"; I'll keep my fingers crossed.

Best of luck,

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

Tamara

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Re: Is Surgery after Radiation more difficult?
« Reply #31 on: February 24, 2008, 03:52:06 pm »
I've enjoyed the discussion so far.  I am trying to decide what to do about my 7mm AN.  The dr I met with is recommending surgery in part because of the subject posted here.  I am going to call my friendly neighborhood CK center tomorrow and schedule an appointment and see what they have to say.  I have the feeling that the surgeons are going to recommend surgery and the CK guy is going to recommend CK.  Hmm.  I do think that even if I have regrowth following CK, the surgery would not be too much worse since it is very small (relatively) at this point - meaning even if CK is a total failure, I'd likely still have an AN of much less than 1 cm in a year or two.

Off subject:  I've had a hearing problem since about 1988, though noticably and progressively worse in about the past 10 years.  Does that mean that my 7 mm AN has been growing for 20 years??  What do you think?

Thanks for all the links and statistics - there's a lot to think about.

Tamara
7 mm AN left side
translab 6-12-08
postop issues including CSF leak, eye issues, and facial palsy.  All issues resolved at 9 mos. except slight facial palsy & weakness.  Continuing to improve...

sgerrard

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Re: Is Surgery after Radiation more difficult?
« Reply #32 on: February 24, 2008, 04:11:48 pm »
I have the feeling that the surgeons are going to recommend surgery and the CK guy is going to recommend CK.

Tamara, I think you are catching on now. ;) Yes, that will probably be the case, leaving the final decision up to you, the person with no prior experience or training in AN. Isn't it a great system we have?  :D

I think your view of possible regrowth after CK is very sensible, a small regrowing AN should not be a huge challenge surgically. I think someone posted elsewhere (Kate, maybe?) a quote from Dr. Medbery, saying in effect "you don't make a treatment decision today based on a 1 or 2% possible outcome", which I think is also very sound advice.

- - - -

Jan, I'm sure you are right, having some hearing on the left side makes it much better than having none. I was just at a Portland ANA group meeting, and while I was talking and looking elsewhere, someone asked if I still had directional hearing. They all laughed as I scanned around the room, trying to work out who had asked that. It is not fully functional, and I do say "What?" a lot, but it is not as disorienting as SSD.

Who knows? Despite all my grumbling about it, I may end up trying some sort of hearing aid or listening device anyway. Maybe they have a good one now...

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.

Sue

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Re: Is Surgery after Radiation more difficult?
« Reply #33 on: February 24, 2008, 04:15:50 pm »
Did you notice that Phyl didn't offer any of the martini?  Hmmmmm?

Well, I tried to follow all of this and all I know is this:  When I go to see my doctor this coming Friday and he tells me that maybe it failed and we have to do something else, I'm not going to be a happy camper.  But I don't anticipate that to be the case.

Carry on..

Sue in Vancouver
Sue in Vancouver, USA
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Diagnosed 3/13/06 GK 4-18-06
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Kate B

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Re: Is Surgery after Radiation more difficult?
« Reply #34 on: February 24, 2008, 06:55:18 pm »
Sue,

I did notice that the martinis,okay cosmopolitans, ran dry... :)
Phyl, must be off the cruise ship and at a port...

I hope for the best for you on Friday.

Steve: yes it was my post from Dr. Medbury.

Tamara: I remember being very confused by the same thing (being the ideal candidate for all treatments).  That is why I wrote the guide through the decision making process. http://anausa.org/forum/index.php?topic=5786.0  It helps you prioritize what is really important to you... For example, if getting it out of your head is important, it eliminates certain treatments.  If size is a factor, it might eliminate others.  You will be surprised, but one day you will all of the sudden know what you need to do...All the best.

Kate
« Last Edit: February 24, 2008, 07:05:09 pm by Kate B »
Kate
Middle Fossa Surgery
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Dr. Brackmann, Dr. Hitselberger
November 2001
1.5 right sided AN

Please visit http://anworld.com/

Sheryl

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Re: Is Surgery after Radiation more difficult?
« Reply #35 on: February 24, 2008, 08:06:51 pm »
Hi Everyone - Been following this interesting topic as my husband had CK on 10/1/07 for another type of benign tumor called a meningioma.  He had surgery first in 2004 to remove the tumor and was told "they got it all"!!  Well, unfortunately, the regrowth was found in November, 2006 - we were told there was a small percentage that could grow back.  He refused another surgery and went the CK route.  It is now almost five months and because of problems, which may just be from the CK treatment, the recommendation may be "surgery".  We will find out more in the next week with local followup along with a package of MRI's and records sent to Dr. Medbery and Dr. Chang for their input.

Tamara - check the CK board and write to Dr. Chang - he would give an unbiased answer as he is a neurosurgeon who also advises and uses CK when he thinks it would be best.  He voluntarily will look at your MRI's and records.

Sheryl (Wait and Watcher for 9th cranial nerve schwannoma)
9th cranial nerve schwannoma - like an acoustic neuroma on another nerve. Have recently been told it could be acoustic neuroma. Only 7 mm of growth in 18 years. With no symptoms. Continuing W&W

sgerrard

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Re: Is Surgery after Radiation more difficult?
« Reply #36 on: February 24, 2008, 08:56:42 pm »
Hi Sheryl, I remember your husband, he hits six months post CK on April 1st - not a great day for a doctor visit. :)

I believe his case could raise the question "Is Surgery after Radiation after Surgery more difficult?", which should send all of us reaching for that martini shaker or something.

I'm glad to hear you are contacting the "big guns", i.e. Medbery and Chang, I would want their opinion if I were in your shoes. I'm hoping they come back with a diagnosis of swelling, and a prognosis that all will be well soon. Maybe that's wishful thinking, but it seems like there is a chance.

Best wishes, 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.

Sheryl

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Re: Is Surgery after Radiation more difficult?
« Reply #37 on: February 25, 2008, 03:27:11 pm »
Hi Steve (and others) - Always get a chuckle out of your answers - thanks.

Got a call from our local neuroradiologist (and friend of ours) who was away last week when latest MRI was done.  He reviewed it and said that everything looked stable from the last on 12/26/07 (when hubby was hospitalized with focal/partial seizure) and also back to MRI's since CK.    Even though not a radiation oncologist, he is familiar with CK and felt that what he was seeing could still be effect from the treatment (swelling).  Also had visit today with neurologist who said "don't make appt. for surgery just yet".  He felt comfortable decreasing the Decadron very slowly and checking hubby out in two months as long as he is stable with no events.  The Decadron is causing terrible side effects - increased appetite, severe swelling of face, hands, feet, and ankles, up at 3:00 a.m. for the day, and memory issues.

Will be awaiting word from the "big guns" - meanwhile I think I'll go for the high caloric, creamy drinks like a frozen mudslide sitting on my back lanai with the thermometer reading 82 degrees (and humid) here in S.W. Florida!!!
Sheryl
9th cranial nerve schwannoma - like an acoustic neuroma on another nerve. Have recently been told it could be acoustic neuroma. Only 7 mm of growth in 18 years. With no symptoms. Continuing W&W

Kate B

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Re: Is Surgery after Radiation more difficult?
« Reply #38 on: February 25, 2008, 09:10:12 pm »
82 degrees seems like a distant memory here in Chicago.. We are getting yet another snowstorm.  I must admit, the big puffy flakes are beautiful tonight as they fall from the sky. Now the grey icy stuff on the ground is another story..

That was a great first report today...Swelling is what you want to hear right now.

*Shoot*, I am keeping my fingers crossed for the report from the *Big Guns*....

Back to my latte..

Kate
Kate
Middle Fossa Surgery
@ House Ear Institute with
Dr. Brackmann, Dr. Hitselberger
November 2001
1.5 right sided AN

Please visit http://anworld.com/

leapyrtwins

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Re: Is Surgery after Radiation more difficult?
« Reply #39 on: February 25, 2008, 10:43:57 pm »
82 degrees seems like a distant memory here in Chicago.. We are getting yet another snowstorm. 

Kate -

Snow is what makes Chicago Chicago - it wouldn't truly be winter without it  ;D

Sheryl -

swelling sounds like positive news, let's be cautiously optimistic.

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: Is Surgery after Radiation more difficult?
« Reply #40 on: February 26, 2008, 02:17:31 am »
Ah, Chicago in winter, -20 chill factors in January, those were the days...

Sheryl, that's great news. I can sympathize a little on the steroid, I had two weeks of prednisone, which was more than enough for me. It was back before diagnosis, when the the theory of the week was maybe I had a viral infection. Just that amount was driving me nuts, though fortunately I never got as far as swelling up. I feel for him; I hope the doctors will let him wind it down soon.

82 degrees in sunny Florida, now you're talking.  8)

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.

Kate B

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Re: Is Surgery after Radiation more difficult?
« Reply #41 on: February 26, 2008, 04:23:35 am »
Ah, Chicago in winter, -20 chill factors in January, those were the days...
 

Steve
 

You sound like the voice of experience..Pretell were you from the Chicago area?

It has turned into a winter wonderland out there...Hmm..wondering if school will  be called off this morning...

Kate

Kate
Middle Fossa Surgery
@ House Ear Institute with
Dr. Brackmann, Dr. Hitselberger
November 2001
1.5 right sided AN

Please visit http://anworld.com/

leapyrtwins

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Re: Is Surgery after Radiation more difficult?
« Reply #42 on: February 26, 2008, 06:46:17 am »
Steve -

you sound like you don't miss shoveling the white stuff at all.
Guess that will be my next task - school is on, better grab my shovel.
I have to say though that it's a beautiful sight when I look out my window;
wonder if I'll feel the same after I'm done clearing the driveway  ;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

Sheryl

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Re: Is Surgery after Radiation more difficult?
« Reply #43 on: February 26, 2008, 10:52:46 am »
Steve, Kate, and Jan - Thanks so much for your thoughts and concern.  I guess swelling is a positive thing.  Unfortunately we are 1500 miles away from where the CK was done and their last comment after viewing MRI that I sent up there from 12/26/07, was "surgery should be done".  It was kind of disconcerting coming from CK professionals so we're hoping that the word from the "big guns" is better - maybe hang on a little while longer so CK can do its thing.

Having been a New Englander most of my life, I've had my share of shoveling, slipping, sliding, and skidding.  It is beautiful though watching Mother Nature cover everything in pure white.   We do go back and forth now (thus the nickname of "snowbird") and enjoy summers on Cape Cod (where we lived originally) and winters in Florida. 

Well, off to the pool !!!
Sheryl

9th cranial nerve schwannoma - like an acoustic neuroma on another nerve. Have recently been told it could be acoustic neuroma. Only 7 mm of growth in 18 years. With no symptoms. Continuing W&W

sgerrard

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Re: Is Surgery after Radiation more difficult?
« Reply #44 on: February 26, 2008, 10:48:54 pm »
I grew up in St. Louis MO, then went to college in Chicago (U of C), and worked there afterwards another 3 years or so. I did actually like it, although I have a few memories of bitter cold in January that I don't miss. I have been back once or twice, in April I think, and it looked really good. I used to ride the L down from Wicker Park to work in a lab at U of C on the south side, and ride it home again late at night. I can't imagine how I did that as long as I did, I wouldn't last a week at it now. I'm getting older, I guess. :)

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.

 


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