Anyone have surgery after radio-surgery?

[stoneaxe]

I'm hoping that all my worst fears will be for naught...I'm calling my neuro tomorrow for the MRI report from last thursday...but everything else seems to be leaning towards bad things going on inside my head. My audiology test today showed complete deafness on my AN side..2006 I had some sense of low frequency tones. I've noticed more frequent headaches...almost constant minor background pain with more frequent heavy hitters. I've had some numbness in my face and a slight scratchy feeling in the corner of my eye for the last couple of months. I've had a slight increase in dizzy episodes. In discussion with my ENT today he mentioned that my AN was at 1.2 cm in the September report. My neuro had said there wasn't any change from last March...11mm. Now I know that maybe 1mm may be within the margin of reading or machine error but hearing 1.2 cm for the 1st time wasn't a good feeling.

We also discussed my reasons for choosing radio-surgery over traditional surgery last time which was mostly hearing preservation, which no longer matters, (didn't work) and potential for less side effects. I told him that if there is more growth shown I will probably opt for traditional surgery this time just to have it over with and not subject myself to more radiation. He said regardless of the outcome of this MRI I should have a surgeoun start to follow this thing (jinx) and suggested Dr McKenna.

I guess I will know tomorrow if there is any significant growth and anything really to worry about immediately but I'm curious to know if anyone else has had surgery after radio-surgery and if it caused problems. I've heard that the scar tissue from radio-surgery can make traditional surgery more difficult.

[leapyrtwins]

Yes, people have done it.  Not me, but I know for a fact that my neurotologist had a patient or two who had GK somewhere else, had regrowth, and then came to him for surgery.

As I recall there was a lot of debate about a year ago on the forum about whether surgery after radiation would be an issue and I believe the answer was no.  If I get time later today - have to leave for work now - I'll look for the thread and post the link.  I think Steve and Mark were involved.  Maybe Steve remembers it.

In the meantime, you might want to search the forum.

Good luck,

Jan

[Kaybo]

Stone~
I so hope for you that surgery is not in your future, but I know that if it is, YOU will come thru it with flying colors because of your incredible attitude and desire to keep getting on with your life!!  Nothing can stop us unless we let it!!  Know that we are here to support and encourage you whatever happens!!  You are in my prayers, my friend.

K

[NancyMc]

Stoneaxe,
Sorry for your worry.  See McKenna as soon as possible.  He and Barker can do anything.  Don't worry, be happy.  Go out on the water.  You'll be fine.
Nancy

[cindyj]

Let's hope it doesn't come to that, Bob!  But to answer your question, yes, there have been folks that had surgery after radiation...a recent one from the forum is Kathleen (Kathleen5306) - she had CK a number of years ago, then surgery last summer due to growth of her tumor.  Her story is here somewhere (sorry I didn't get you a link).  Her surgery went very well...but, again, I hope you won't have to go that route.

Keep us posted,

Cindy

[ppearl214]

Bob,

I'm going to try my best here to help.

Yes, you are certainly within the total margin of error in head MRI reads... now, please try to keep in mind one thing... the goal of all radio-treatments for AN's is to stop the growth.

As you already know, each person/doc/radiologist is going to read films differently from another.  No 2 people are going to measure it the same. Heck, my team at BI (my neuro onc and my radio onc) don't even measure mine the same... I just take the "average" of the 2......

we know, going into radio-treatments (regardless of which one), the risk involved is hearing loss. Like you, I chose my radio treatment for hearing preservation. I'm so sorry that you are running into the SSD now, but as I noted in my other post to you, it's ok..... truly.  "Deficits" in life can be well compensated by others.  At least you do not have bilateral hearing loss and that, to me, is a grateful thing.  marystro, a user here, had CK and yes, she lost most of her hearing. BUT, her AN stopped growing (at last check) and that is what we need to be thankful.  Risks involved are shared with us in advance... as it was with you.... I'm sorry that this has now happened (the SSD).

I honestly do not see an indicator to go running into surgery.  See what the team at MGH says but based on what you have shared, if the AN had grown significantly (ie: went from 11mm to 19 mm), then, I would see the concern. Your's has not and for that, I am grateful for this news. Keep us updated on what MGH says and we'll all be able to share more with you on Sunday.

Please hang in there!
Phyl

[joebloggs]

Hey buddy,

Sorry to hear the increase in symptoms... that is not fun and would no doubt leave you thinking that the lump is growing.  And if it is then you will deal with it in the same way you seem to tackle life - with good humour and a great attitude.  Although I can't give you any advice about surgery following radio, I can tell you that I'm thinking of you and I know that whatever decision you have to make you will rock it!

The symptoms you describe, more headaches, increasing deafness, numbness, eye weirdness (my eye ended up having no feeling on it's surface), and an increase in dizziness all happened to me prior to treatment.  Although I haven't had radio prior to my surgery, since my surgery I've had no headaches (or at least didn't notice any when I was in the hospital on drugs!), the numbness is gone and my eye now has full feeling.  Hurrah for that!  Can't say much about my deafness or balance because that's completely stuffed! But at least you know that although my surgery went really well, you do know that it is possible for these symptoms to be fixed following removal of the lump.  That was what surprised me the most after the surgery - I thought all of those things were going to be a permanent fixture.

Hope you get some good news back from the doc

xx
JB

[stoneaxe]

Talked to the docs office. The report says slight growth. Not sure how slight...my only question was yes or no. Didn't talk to the Doc. I'll get the full lowdown on the 29th. I'm going to make an appointment with McKenna and see what he thinks. My biggest concern now is the facial nerve...all thats left to worry about... . We'll see what happens...truthfully my thought is to get rid of it before it has a chance to get near anything else. I'd prefer they get it while the getting is good. If I get it done and over with I can get back to training for CCBC 2009.

BTW....it looks like our charity of choice as beneficiary for this years paddle is going to be Christopher's Haven. They are much like the Ronald MCDonald house. They provide housing for kids and their families that are getting treatment at MGH for cancer.
http://www.christophershaven.org/

[NancyMc]

Good on both fronts.  McKenna and Barker are my ROCK stars.  Children with cancer should be abolished.

[leapyrtwins]

Children with cancer should be abolished.

I know what you mean, but somehow that wording just doesn't sound right!

[NancyMc]

I actually woke up after trying to get to sleep and thought . . . What did I just say?   
Blamin' it on the brain tumor,
Nancy

[EJTampa]

Children with cancer should be abolished.

I know what you mean, but somehow that wording just doesn't sound right!

I almost spit out my drink when I first read it.  I haven't laughed this hard in a long time.  Not because I think that children with cancer should be abolished, but because I know that Nancy meant one thing but typed another .
 
Seriously...that line may very well become famous around here .
 
Ernie

[sgerrard]

Bob,

As Jan commented, we have chewed over the surgery after radiation chestnut more than once. For the good surgeons, anyway, it is not an issue. As Cindy mentioned, there are cases here where it worked out just fine.

The big question is whether the symptoms are really ramping up, or are you just having an allergy season flare, up or something, which will go away in a month or two. I hope it is the pollen, although it doesn't really sound like it.

Anyway, hope you get some answers, and don't be hasty but do stay on it.

Steve

[Kaybo]

I'm with Steve - I really hope that this is something else.  I have had a few scares over the years and just KNOW that the AN has come back - then I get an MRI & everything is fine and I can explain away all those symptoms.  I want so much to trust in God, but when you have already gone thru something like this - it is hard to let it completely go!  I have h d some pretty convincing symptoms before and it turned out to be nothing - I do hope that is the case for you, Bob.  Expect the worse and hope for the best is what I always say - it is better to be prepared - mentally and physically.

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

K

[cindyj]

Yes, children with cancer, or any disease, syndrome, etc should be...abolished.  As we have discussed before, most of us can withstand anything that happens to us, but can not abide things that happen to children.

Thanks, Bob!

Cindy