ANA Discussion Forum
Post-Treatment => Post-Treatment => Topic started by: mimoore on December 04, 2008, 04:37:17 pm
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Okay so I had my 6 month MRI. My neurosurgeon had to leave some tumour on my facial nerve to "save it" and my temporary paralysis is improving everyday - SLOWLY! I am certainly learning patience (which I had none of before, hmmmm is this a lesson?).
Anyway I am bummed to have found out that the little piece of tumour is much more than I thought ...9mm x 5mm x 3mm. Like a sausage running along my facial nerve in my CPA.
Did I do all of this just to buy some time? I cannot go through this every ten years. He did talk of GK in the future, if needed. Although in my intial appointment he said GK could potencially cause cancer in the future. I am so confused and tired. Do we not have CK in Canada?
I feel like it it obvious that it will grow. It is attached to the facial nerve, so it does have blood supply. This sucks... and to boot only one eye cries. I am just going to get my face moving again and I have to deal with this. It is too much to think of.
I am going to cry a tear in my beer :'( (I don't like beer). My husband said I am too negative. I would have liked to see how he dealt with all of this.... bet he wouldn't shrug it off then.
Pity party for me.
Michelle
Not smiling today... :'(
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Michelle:
Oh boy. Your MRI that shows a substantial portion of the AN remaining - with blood supply intact - is certainly a good reason to be worried and depressed. I would be, too. Your 'pity party' is not only understandable but justifiable, at least from the prospective of a person who has had AN surgery. Something your husband has not, probably inhibiting his ability to understand your feelings in this matter. I trust you'll forgive him. I'm sure he wants the best for you.
I only hope that once these feelings of depression lift you'll be able to do something about this situation before it becomes problematic. Frankly, I would be looking for a radiation oncologist to address the remaining tumor with FSR or other form of radiation. You may need to find another neurosurgeon, too. This doctor seems to be less than sympathetic and his concerns about radiation might indicate an antipathy towards that choice, which is yours, not his, to make, based on as much knowledge and medical professional's input as possible, of course.
Consider your options and know that we all understand your frustrations. In fact, many have had to deal with similar aggravations over post-op problems, including the very real risk of a re-growth, which is especially upsetting. I think that may be avoided but I can only offer suppositions because, all together now, I'm not a doctor (and never played one on TV). :)
Let us know how the 'party' went and what you plan to do next.
Jim
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So sorry Michelle for your distress! You need Donnalynn's soothing Canadian loving nurturing!!! Maybe she can direct you, though she went to HEI for her surgery. Thinking of you and sympathizing, also praying for you too,
Jackie
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Geez. Life doesn't seem fair sometimes.......and it's not. I would also want to think about the radiation route since the remaining AN is so small and this would be less likely to damage the facial nerve again. Make yourself feel better about this by getting multiple opinions from respected docs in this specialty. If you ask a surgeon what you should do........guess what he will say SURGERY! Get your options and try to take a deep breath and just know that everything WILL BE OKAY. This is where faith comes in. I'm thinking about you.
Angie
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Hi Michelle,
Francesco wrote a really great synopsis of his fact-finding after being diagnosed with AN. He ultimately opted for cyberknife. But he learned all about all of the options first and documents his journey at www.myacoustic.org
I hope it will help you.
Sending love,
Sara
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Michelle, the doctors always have to tell you the potential risks, but the cancer risk with this radiation is very, very small. Tiny. You were at the same, if not greater risk to die when you underwent anesthesia for your surgery. There are always potential risks. But......you know, it's your choice.
Hang in there,
Sue in Vancouver USA
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Thanks Everyone,
This MRI will serve as a good base line and in six months I will have another MRI. THEN I can address the remaining tumour. Right now I realize I don't have the energy to face this now. I need to concentrate on healing and getting stronger from surgery. I need to be strong, beliieve and move forward. Pity party is over.
Jim what is FSR?
Michelle
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Hi Michelle,
Bummer! I don't blame you for throwing a pity party, and I'm so sorry you are having to deal with this. I would definitely check out FSR. The dosage of radiation is very small and controlled.so the chance of cancer, which is small to begin with, should be negligible. Good luck and remember that we all care about how you feel.
Priscilla
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Oh Michelle,
I know that was not what you wanted to hear. Did he say if that was the size that was left or has it increased since surgery? Maybe if it is unchanged since surgery, and we all know they grow slowly, then it will be many many years (or never) before you have to do anything about it. With the vast improvements in the world of medicine and surgery there is no telling what treatments are coming down the pipeline. I will keep you in my prayers.
Susan
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Hi Michelle,
Time for a little math class - just the thing to liven up a pity party. ;)
According to your signature line, your original tumor was 2.5 cm x 2.1 cm x 2.4cm. The remainder is 9mm x 5mm x 3mm. First lets convert the remaining one to cms: 0.9 cm x 0.5 cm x 0.3 cm.
Although we all often talk about the length of a tumor, it is really the volume that matters. Your original tumor was 2.5 x 2.1 x 2.4 = 12.6 cc. Your remaining tumor is 0.9 x 0.5 x 0.3 = 0.135 cc. What that means is that you have 0.135 left, out of the original volume of 12.6. That is is to say, about 1% of the original volume (1.07% to be picky).
See, don't you feel better already? It actually is just a small percent of the original size. It would take only 1% of the radiation dose that the original would have needed. Lie on the table, get a little zap, no problem. And the facial nerve is pretty resistant to radiation.
Okay, it wasn't great news, the little thing could have had the courtesy to gracefully exit stage left, and it didn't. But it may not even grow, as surgery often disrupts the blood supply enough to prevent that. Even if it does grow, it is a small bit that can be taken care of if necessary.
I am sorry to hear it, but I hope you get back to focusing on that slow but steady recovery of facial function, and getting a TransEar, and all that stuff. Don't let this little bump get you down. Best wishes as always,
Steve
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Hey Steve or should I say Mr. Math,
After your mathematical explanation "I" even feel better and it's not "MY" facial nerve involved! Michelle, I hope this explanation has you feeling more settled down and I pray the blood supply to that tumor is being cut off as I type!
I certainly would not like hearing the news you did and especially the way your doctor put it to you regarding radiation. Too bad he couldn't have explained it the way "Mr. Math" did as this probably would have made you feel more hopeful. Hang in there as I know you are doing your best with this.
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Hey Steve can you be my doctor? ;D
I do feel better thanks.
The remaining tumour has not changed in size since my surgery which is another positive thing.
Michelle ;D
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Hi Michelle,
I don't often come to this particular topic within the support boards, but I did today. First, you have every reason to feel the way you do and we all understand. I'm one that thinks it's important to acknowledge these feelings and work through them rather than around them. I believe we get past it more quickly. And I love Steve's math lesson and felt better myself after reading it. FRS is Fractionated Radio surgery (radiation). It's radiation given in multiple doses, like cyberknife (3-5 treatments) rather than one shot of radiation. It's better for hearing preservation. Since you've lost your hearing already, I think you might look into the Gamma Knife, which has as good of statistics of tumor control and facial issues, and it's just one time. The only thing is they have to screw those little things in your head, so you might take issue with that.
I think if it were me, I'd go ahead and wait and heal physically and emotionally, but research your options as what to do. You know, it may not grow at all and you don't have to do anything. If it does, I would seriously consider radiation. Dr. Chang says out of 700 AN patients on CK that Stanford has done so far, only 8-9 have shown regrowth.
Hang in there and I'll be at your pity party anytime....and I'll invite you to mine, too, when I need one!
Tisha
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Steve, I think I will have to correct your math ;)
The calculation of volume is as follows: 3.14*(dimension1xdimension2xdimension3)/6. So in Michelle's case the original volume turns out to be 6.6 ccs. This calculation assumes an approximately spherical shape, which is not necessarily the case especially for remnants after surgery. According to the same calculation, the volume of the remaining portion is 0.07 ccs.
But your point is well taken, that volume is what really matters and the remaining volume in your case Michelle, is really small.
When calculating the radiation dose, at least with GK, the dose is actually larger for small ANs, than with larger ones. This sounds odd, but it has to do with the tumor response. Large ones, will tend to respond to higher doses by more swelling, which is undesirable.
Michelle, there is no CK in Canada yet (although one of the doctors at the Cyberknife forum mentioned that they would be getting one soon). There is a GK centre in Toronto. There is also the option of multiple FSR treatments (I think over 25 days) with Linac (I think?).
But I really believe that the wise thing to do is not to worry about it right now (after all, this may be just a remaining bit, not growing any more). After doing your next MRI, you can reconsider things, depending on what the results show. For now try to relax and enjoy the holidays.
Marianna
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michelle
sorry to hear that your feeling down and happy that your pity party was short lived. take some solice in the fact that these are very slow growing tumors if they grow at all there is a large population of AN tumors that never grow, (steve what a great accountant! he can balance my check book any day i really enjoy his math) I think you have the best attitude about every topic here on the forum, your advice is super. take it one day at a time heal from the original surgery ,get strong and deal with the mri's as they come, but you know all this look im preaching to the choir. your a super person with a super attitude,i'm glad your feeling better.
yours in health bill
P.s : a pity party is especially fun if the cupcakes are chocolate wth chocalte icing, by the way chocolate is a good source of magnesium
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When calculating the radiation dose, at least with GK, the dose is actually larger for small ANs, than with larger ones.
I think that is true for how many Gy you are getting (12 or 13 with GK, 5 or 6 per day with CK). However, the Gy (gray) is a unit of radiation per kilogram, roughly the same as a unit of radiation per volume. The total amount of radiation for a larger AN will be higher, even if the number of Gy's is lower, since there is more volume to radiate.
Steve
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Jim what is FSR?
MIchelle:
FSR is the acronym for Fractionated Stereotactic Radiosurgery. Basically a series of brief (20 minute) 'low-dose' radiation treatments spread out over time (weeks) to give the surrounding brain tissues time to recover between doses. I underwent this procedure and it was painless with no side effects and, I might add, very successful in my case.
Here is a link to the Johns Hopkins website that offers a detailed explanation of FSR. Better than anything I could write. I hope it is of some help to you.
http://www.radonc.jhmi.edu/radiosurgery/treatmentoptions/stereotacticradiosurgery.html (http://www.radonc.jhmi.edu/radiosurgery/treatmentoptions/stereotacticradiosurgery.html)
Jim
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Hi Michelle,
I am so sorry to hear so much of your tumor was left behind -- finding out the size must have been quite shocking. It seems like you've gotten a lot of good advice and I dont really have anything to add, just a virtual shoulder to cry on, if need be. Since you are having another MRI in 6 months, take this time to regroup and eventually look at this with fresh eyes, so to speak. I would not say you are negative, overwhelmed maybe, but definitely not negative.
Best wishes,
Wendy
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Thanks everyone for listening to me whine. Yesterday I was overwhelmed and I had a down day but today is a new day. Life goes on and I choose to live my life to the fullest. I picked myself up, dusted myself off and I am ready to be strong again (with your help of course... thanks for being there).
Remember I am here for you too!
Hugs Michelle ;D
Smiiling today.
What a journey this has been. Is that why they call us survivors?
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Hey Michelle,
You know, what's left of your AN may not grow at all. Hope springs eternal, I know....
It's okay to have a pity party, I've had more than I can count since surgery. Glad you're past it but don't deny it when it comes, just wallow for a while until you're ready not to.
All best,
M
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Aw, crap Michelle! Just want you didn't want to hear, I'm sure!
The math wizes explained quite well, and yeah, I'd feel a little bit better just from seeing that.
Good luck, hang in there. You have every right to be having an "off day" after everything you've gone through! Here's some chocolate (yeah, healing properties, right?) and a (((hug))). Hope the future days are better with more healing!
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Aw Michelle. Please know that you have the LA group pulling for you.
David
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Michelle, Please know that the nutcases over on the PBW and the good morning thread are pulling for you too! We usually turn our pity parties into beach parties!
The last symposium lecture in Philly, during which I had a splitting headache so I don't remember too much, was about debulking tumors and following with radiation as a new treatment of choice for facial nerve preservation. I think you may be able to get a CD transcript of the lecture through the ANA if you want to hear a little more information on the subject. I think I can remember which one you need to get--I'll look it up if you want!
Hugs,
Dapt Deb(http://i235.photobucket.com/albums/ee60/Captdeb_photos/skull_swords_cross_displaypink.gif)
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Sorry about your head ache Debb.
I remember my doctor asking me about my head pain and said "So you have a head ache?" I remember looking at him with my dagger eyes and saying "Well it is more like an ice pick to the brain doctor" The word head ache is too mild to use for some of the pain I have experienced. We need to think up a new word for our head pain.
I would love more information on radiation after surgery if you can remember the name I will ask for a CD transcript.
Thanks for the kind words everyone! Honestly everyone else in my life thinks I am "back to normal". If only they could be in my head for one day...I wish the damn ringing in my ear would stop....today it is bad!
Michelle ;D
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Michelle,
It's their version of normal vs. ours: what they see is not the full story, but probably isn't with most people. At least that's what I try to tell myself. Today I got a sharp pain near/in my incision during a meeting with a student and actually had to stop and say "ow". The student was seriously worried. I was not worried, however, evidence that my normal is anything but. Normal is boring.
Marci
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Michelle,
The ANA Cambridge transcript link isn't working right now--I'll try later today or on my other computer later. I'm sure I'll recognize the speaker's name and the title of the talk and I can get the title and link for the order of the CD for you. I was able to order the CD of the headache workshop that I missed (due to my headache of course) and found it to be really helpful.
Capt Deb
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Thanks Debb you are the best! I think it is important to arm ourselves with as much information as possible.
Michelle ;D
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Michelle,
Link still not working, but I emailed the ANA and told them of the problem--shoould be hearing back from them soon!
Capt Deb 8)