Anyone have surgery after radio-surgery?

[NancyMc]

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

Just taking last dose this very moment.  Hope you don't expect me to be perfect now!

Bob,
I think of you every day.  You have the strength, mental and physical, to get through this with ease.  I just wish you didn't have to treat your tumor again.  We'll be here for you.  Find the best team.  I have the utmost confidence in Dr. McKenna.  Feel free to drop my name (and Steve's and mommy Katie's and Paul's and Jane's and . . . ) for extra special attention.
Hang in there.
Nancy

[stoneaxe]

Thanks for the kind words all. I've been kind of lost in my thoughts the last few days. I've looked at all my MRI's, read all the reports and it's pretty clear that there has been slow but steady growth over the last two and a 1/2 years. I have to admit...this has overwhelmed me a few times. Coupled with all the other struggles it can be a bit much. So much going on right now this is the last thing I want to deal with. I know we'll get through this and be stronger for it on the other side. Just a little tired I guess.

[leapyrtwins]

Bob -

It's normal to feel lost and overwhelmed, but I agree whole-heartedly with you.  You WILL get through this and you WILL be stronger for it on the other side.

We all have many amazing capabilities we are totally unaware of, until push comes to shove.  You never know what you can do, until you have to do it.

I wish you didn't have to go through this, but I firmly believe there is a reason for everything and that God only gives us what he knows we can handle. 

You are lucky to have a supportive family and a good doctor, plus you have all of us behind you.  I'm confident you'll come out of this situation just fine.

Keep the faith.

Jan   

[cindyj]

Thinking of you, Bob...hang in there!  I know you, of all people, will...and can, get through this!  But everyone gets tired and frustrated at times - so it's certainly ok for you to feel that way...for a bit anyway   Like Jan said, we're here for you - you've certainly been here in such a positive way for others here!

Cindy

[Keri]

Hi Bob,
I'm sorry you have to go through this as well. I was wondering if there's any new news? new appts, dates, etc in your future yet.
Take care,
Keri

[Greg M]

Hi Bob, I just had my last consult with the Neurosurgeon on my GK team in Portland Oregon. He has done over 200 AN treatments using the GK machine and he has done about the same number of surgeries. Just to throw out two comments he made to me. He said clearly that surgery after radio surgery is not more difficult, that is a myth and that is untrue. Also he said if my 1st GK treatment fails he suggest we hit the damm thing again! I don't know if this helps but I hope it does somehow. Blessings to you, Greg

[Dana]

Hi, everybody,
I've read this thread very carefully, and appreciate all the input for Bob.  I've been feeling great since GK in July 07, but am now headed into my 2nd follow-up MRI and am feeling very apprehensive & sad.  I know the hearing on my right (affected) side is worse and I'm worried about having to have physical surgery.  My rational self knows there are lots of steps before I'd "have" to make that decision, but it's depressing nonetheless.  So...if's WONDERFUL knowing that this great group exists, cares, and has been through similar.

If I may "unload" on you guys for a minute, I must admit that my fear of microsurgery comes from lots of experience with it amongst family members.  Mother's aneurysm required one major and 4 other brain surgeries, and my first husband's surgery to remove a different kind of benign tumor (pushing on the medula) was his ultimate undoing, as he died 2 months later.  My opinion is that he wasn't allowed to heal with the hospital lights/environment.  He was older -- 72 at the time -- so that probably had an effect too.  I've never told you guys about his death as a result of brain surgery because I don't want to scare people.  I trust/trusted the neurosurgeon completely.  But the truth is that it was the results of surgery did him in.  I'm hoping that folks whom this would scare AREN'T reading this, but I now feel the need to tell you so you'll know my angst if I have to face brain surgery.  For some reason, I've just been upset about all this this week, as SSD is clearly becoming a reality for me.

It may be that the SSD is still just a result of AN swelling from GK.  I'm not really concerned if I end up SSD.  I'm only concerned if the GK didn't work.

Anyway, thanks for listening.  I don't write on the board much, but you're all an important part of my life.
Hugs,
Dana

[sgerrard]

Hi Dana,

I would not take progressive hearing loss to be a sign that the AN is growing or that GK has failed to stop it growing. There are some reports that suggest that most radiation patients lose hearing over time, and that radiation delays the loss of hearing, but doesn't prevent it in the long run. While it is possible that something is going on, I think it is far more likely that you are just losing more hearing each year. Becoming SSD is no fun, but I would not worry about regrowth unless and until you get a definitive sign of it.

Nice to see you again.

Steve

[leapyrtwins]

Dana -

I agree with Steve.  You may be worrying needlessly; you never know what the MRI will show.  It's best to wait for the results and then go from there.  Lots of times what we worry about never comes to fruition. 

If there ever does come a time where your MRI shows the radiation didn't work, please know that we are here for you and you can lean on us any way you need to.

Wishing you the best.  Please keep us updated.

Jan

[Kate B]

Dana,

Hearing loss does not equate with tumor growth.  I had my surgery seven years ago and have had yearly MRI's.  I have less hearing  and word recognition in my right ear  over the past two years than I did seven years ago and their is NO evidence of tumor re-growth.  Only your radiologist knows for sure

Many studies show that hearing loss up to two years with radiation treatment can happen.

All the best,
Kate

[Kaybo]

Dana~
I can see why you would be even more scared than someone that didn't have that history with brain surgeries but I think that many have chimed in reasons to please TRY not to worry until you know something for sure...

K

[stoneaxe]

I have an appointment with Dr McKenna at Mass Eye and Ear on Wed. for a consult.  I've pushed it aside until then. The funks that i've found myself in are pretty short for the most part. Keeping very busy lately which is good and feeling pretty good. Only indicator that keeps cropping up is the dead face feel.

Dana...I agree whole heartedly with the others....I realize how difficult it must be for you but please don't worry yourself needlessly. Remember, what happens to one doesn't mean much to another....we're all different.

[NancyMc]

Good luck tomorrow, Bob.
Tell 'em (McKenna and McCall) I said Hi!
Hang in there.  I think of you often.
Nancy