ANA Discussion Forum
Treatment Options => Microsurgical Options => Topic started by: stoneaxe on April 13, 2009, 11:45:10 pm
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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.
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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
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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
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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
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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
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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
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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
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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... ;D. 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/ (http://www.christophershaven.org/)
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Good on both fronts. McKenna and Barker are my ROCK stars. Children with cancer should be abolished.
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Children with cancer should be abolished.
I know what you mean, but somehow that wording just doesn't sound right!
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I actually woke up after trying to get to sleep and thought . . . What did I just say? ;D ;D ;D
Blamin' it on the brain tumor,
Nancy
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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
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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
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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! :o
K
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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
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I did a double take on Nancy's comment too - even though worded wrong - I knew what she meant! :o
Yeah, I'm thinking it's time to cut off Nancy's steroids :D
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
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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!
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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.
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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
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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
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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
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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!
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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.
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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
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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... ;D
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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
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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
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Children with cancer should be abolished.
Brain surgery patient in recovery..... i've had a few of those this week. ;D ;D
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
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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?
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Bob,
McKenna is into fishing. We talked more about giant bluefins than about the operation!! Good luck!
Steve
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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
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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.
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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
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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
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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
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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
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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
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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
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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
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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 ;D
Many studies show that hearing loss up to two years with radiation treatment can happen.
All the best,
Kate
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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
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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.
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Good luck tomorrow, Bob.
Tell 'em (McKenna and McCall) I said Hi!
Hang in there. I think of you often.
Nancy