Anyone have surgery after radio-surgery?

[leapyrtwins]

I did a double take on Nancy's comment too - even though worded wrong - I knew what she meant!

Yeah, I'm thinking it's time to cut off Nancy's steroids 

Stone -

I'm still looking for that old thread - couldn't find it last night, but will look again today.  Even if it ends up not applying to you, it had some very good information for those who face surgery after radiation.

Steve -  any clue where this thread is?  I know you - and Mark - were two of the big posters.  If you can find it, can you give us the link?

Thanks,

Jan

[clarmst]

I'd be very much interested in the thread on surgery after radio-surgery.  I underwent 5 FSR Cyberknife treatments in the summer of 2006.  My MRI's have continually shown growth and my radiation oncologist has determined the treatment failed.  My neurotologist wants to have another follow up MRI in July before he calls it a failure. 

He has only performed surgery on one prior failed treatment, so I'm certainly open to finding someone with more experience.

I'm so grateful for this forum.  It seems like I learn more each day!

[stoneaxe]

I wish you weren't in this boat with me clarmst. Must have been tough seeing the damn thing just keep growing. I thought I was done with any treatments....I'm hoping that I'm not back to square one.

[sgerrard]

Steve -  any clue where this thread is?  I know you - and Mark - were two of the big posters.  If you can find it, can you give us the link?

I don't think Mark is featured in this one, but Kate B, Phyl, you, and I are in there. The title is Is Surgery after Radiation more difficult?
http://anausa.org/forum/index.php?topic=5861.0

There is a difference between saying "it is more difficult" and "the outcome is worse." Sometimes the doctors just complain about having to work harder.

Radiation can make the tumor stickier, and  the chance of a facial nerve ding does go up. One study reported four cases of facial nerve issues out of 16 salvage surgeries following gammaknife. I think they were all retrosigmoid. Not great news, but not earth shattering either. The more experienced surgeons describe it as "different, but not more difficult."

Steve

[leapyrtwins]

BINGO!  Just the thread I was looking for.  Now why couldn't I find it??  Thanks, Steve.

Clarmst -

my neurotologist (Robt. Battista) is one of the docs @ Ear Institute of Chicago (www.chicagoear.com) and I know for a fact that both he and his partner (Richard Wiet) have done successful surgeries on patients who had radiation failures.

If you feel like traveling to the Chicago area, I highly recommend these guys.

Jan 

[cindyj]

There is a difference between saying "it is more difficult" and "the outcome is worse." Sometimes the doctors just complain about having to work harder.

Steve

Well put, Steve...

Cindy

[clarmst]

Oh my - lots of information there to digest.  Not the easiest reading I've ever done! 

I'm still somewhat in the "I can't believe treatment failed" stage.  I was so relieved when my original treatment recommendation was CyberKnife rather than surgery.  Looks like I may not have escaped after all. 

I'll keep exploring all options.   Thanks, Steve, for digging up the info.  You guys are the best!

[stoneaxe]

Thanks for the link Steve...plenty of good info. I'll see what neuro says on the 29th and what Mckenna says on the 6th then look for some additional input before I make any decision for sure. I'll want to find the doc with the most experience and success dealing with radio-surgery scar tissue if I do decide to go ahead with surgery.

Donnalynn...thanks...I'll have a CD of all my MRI's shortly and I am going to make a copy to send out to them for a look see. My symptoms have increased some...I've noticed a bit more dizziness than usual and more frequent headaches, neither of those are much of a bother though, the most disturbing is some slight numbness in my face that I've never had before.

[Keri]

Hi Bob,
I'm just now reading this. I didn't realize that there were these concerns regarding your tumor. I hope you find some answers on the 29th and that all is well.
Keri

[stoneaxe]

Bob, I'm sure that those symptoms are dis-concerning for sure... I really feel for you.
Try to hang tough though untill you hear from the Doc. maybe it's not as bad as you think! ... Here's hoping ....right along side of you!
counting the days with you......
BTW I met and chatted with Warren ( paddleboard guy) We chatted about you too!  He thinks very highly of you and al that you have accomplished!!!Healso offered to take me out and give it a go in one of our local pools. After looking at the boards and realizing how pricey they are ... I kinda thought it might be an expensive hobby....!!!
Cheers!
Donnalynn

Thanks for the kind thoughts. But please don't waste any prayers on me...there are far too many people in the world that need them more than I do. I'm not really all that concerned regardless of what the outcome is...life goes on....like I've mentioned before...strangely enough having a AN has actually enhanced my life in some ways. I'll deal with whatever comes as it comes.

LOL....Warren mentioned to me that he met you on another forum I belong too today. You should take him up on his offer. It would be fun to try and the benefit is extraordinary.

They are a bit pricey but I see it as a money saver to me. This saves me the cost of a gym membership, I used to downhill ski frequently at $50-$75/lift ticket, this replaces the kayak I was thinking of buying that was 3/4's of the price. None of those provide the kind of vestibular benefit that standup does (well downhill might but at the risk of life and limb... ). It would be a bit different for you though. I have good access to open water and waves year round....not everything freezes solid here...

[suboo73]

Thanks for the kind thoughts. But please don't waste any prayers on me...there are far too many people in the world that need them more than I do.

Bob, As i sit in W & W mode, at 10mm, my doc says, 'ok, i will be REALLY interested in the Dec. 09 MRI, at one year since diagnosis.'
Boy, that got my attention!  Then he says, if it gets to 1.5cm we will have to 'do something.'  Oh my!  Wasn't ready for that one!

So i call my long-time friend, Jeanne, who has since moved away from my local area and ask her how she is doing...  She says wonderful, feeling great!
Then she reminded me of the healing power of prayer, and she is a very spiritual person.  Says she prays for me all the time, for which i am grateful.

I understand what you mean, but please accept the prayers! 
I am not much of a church goer these days, but hope that God will forgive me for that one, too.
(I played the church organ starting at 15 years old and got burned out...)

I follow your story as well as many others, wondering if i will face the same scenario.
We are here with you and for you.

All my best and enjoy the day!
Sue

[Jim Scott]

Bob:

After reading your last post (and Sues' response) I just wanted pop in to comment that I believe no prayer is ever 'wasted'.  I've prayed for some seemingly hopeless situations and for folks who didn't have any religious beliefs - and I never felt as if I wasted my time in doing so.  I believe that prayer changes things and although you are prepared to deal with whatever comes, prayer can only help you do that.  It certainly can't hurt! 

Jim

 

[Seal]

  Children with cancer should be abolished.

Brain surgery patient in recovery.....  i've had a few of those this week. 

Bob,

FYI.  McKenna told me that they do 9 out 10 retrosigmoid.    So you are in the right hands as Nancy said.    Mine my  VERY sticky due to the cystic nature.  A six hour operation stretched to almost 9 hours.   My wife finally got to hold my hand at 8:30PM that night.   So as Steve said, they will just have to work little harder.     I didn't have any facial issues to speak of post op, but my taste buds are shot for now hopefully as well as the balance thing.    Hopefully those come back later.    Let us know how you make out with the meeting.

Steve

[stoneaxe]

I agree with you Jim...I don't think the prayers are actually wasted ..its just that we have limited time to say them all. I do appreciate them.

I spoke with my neurologist yesterday, he called on the phone. He suggested I get it taken out and said he'd be surprised if McKenna didn't do likewise.

I'm picking up CD's and ot films of all my MRI's tomorrow to get to McKenna, I also going to send a copy of the CD's to house. I've also been given the name of Dr. Heilman, Chief of Neurosurgery at Tufts..anyone have any info?

[Seal]

Bob,

McKenna is into fishing.     We talked more about giant bluefins than about the operation!!   Good luck!

Steve