ANA Discussion Forum
General Category => AN Issues => Topic started by: Debbi on April 25, 2008, 08:54:42 am
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I just looked at the calendar again - and was amazed at how many of us are scheduled for treatment/surgery in the next few weeks!
Me on the 30th
Pooter and Kimberly on the 8th
Ceci on the 13th
Claire on the 14th
Melissa on the 15th
Holy Cow! My goal is to lead the charge with a successful surgery - so I can send lots of prayers and positive ju-ju to everyone coming behind me!
I am going to have my husband post after my surgery so that you'll all know the outcome (which will be positive, of course - I refuse to have it any other way.)
Debbi (breathing in NJ - and heading for the spa!)
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Good luck to everyone having surgery or rad. My prayers are with everyone all the time!!!
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Best of luck to everyone who is having treatement soon! Have a smooth and uneventful recovery.
Eve
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Hey Debbi
Have an enjoyable, peaceful, and relaxing weekend. We'll all be with you in thoughts and prayers on Wednesday. When are you headed to the hospital?
Best wishes.
David
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I too am praying for and keeping my fellow ANers in my thoughts, including the poor fellow who bumped my surgery date from May to June. He needs the good wishes as much as the rest of us.
Good luck to all of you with your AN treatments!!
Syl
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Hi, Debbi:
Thanks for the heads-up regarding all the upcoming surgeries/radiation treatments within the next 30 days. And they say AN's are rare. :)
I want to let you, Pooter, Ceci, Claire and Melissa know that you have many unseen but very real friends here and we'll be thinking of you, praying for you and sending you guys all the positive vibes we can when your 'Big Day' comes.
I know your surgical outcome will be positive Debbi. It's kind of you to have your hubby post your results for us, as the waiting is sometimes maddening, even though we understand the reasons for a delay in posting following surgery.
Now, enjoy the spa and whatever else you want to do as you mentally and emotionally prepare for your 'Big Day'. You'll be fine. :)
Jim
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Deb -
Jim is right, you'll be fine :)
Keep the positive attitude and enjoy the spa!
Jan
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Prayers and 'virtual' ((((HUGS)))) to everyone - - now send me some good vibes that my date is set soon ....... I hate this waiting .....
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Denise -
I hope your surgery date is scheduled soon. I'll keep my fingers crossed.
BTW, I just checked out your blog. Your boys are adorable ;D
Jan
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I guess i have been a bit lazy in updating everyone on my "due diligence" and track so far. As you can all imagine, it has been a busy 3 weeks of chatting up surgeons and rad docs.
I raise this on this post (thanks Debbie, and good luck to you and best wishes for a great outcome) because i actually booked a surgical date a week and a half ago and it's for MAY 12 !!!!!!!!!!!!!!!!!!!!!!!!!!!!!!
HAVE I GONE COMPLETELY MAD?!?!?!?
Even i can't answer this.
Truth is ... i have not TOTALLY decided. I am 80-20 for surgery at this point. But i had the option for an quick surgical date so i took it, figuring i could finish my research with something locked-in if i wanted to go that route after all.
The 20% is in favour of FSR (25 session LINAC). I ruled out GK has my AN is 2.9cm and i have quite a bit of brain stem compression (no symptoms though, no urgency, and no indications that rads is not an option for me). Even this was not an easy decision, but it got me a little closer.
I have not ruled out FSR as there is a chance to save my 70% hearing. I can easily manage the 5 week treatment and in fact work is across the street from the hospital i would be treated at (no 60 mile drive to and fro everyday like some on this board had to manage)! There is minimal risk to facial nerve, etc. and the low dose is expected to be well tolerated, even with the BS effect (i mean 'brainstem' guys!). I am so tempted to take this route... it seems soo..... EASY compared with surgery.
Not that anything is easy here. I have agonized day and night and have for the past 2 months.
SO WHY AM I STILL LEANING TOWARDS SURGERY??!?!?!?
One of my big issues (as many might recall) is that i am keen to have another baby soon (i turned 39 in Feb). The rad doctor told me that i should consider waiting 12 months after rads to conceive. He said swelling is possible particularly in the first year, although he was not super concerned. But obviously if i am pregs it would create issues if i did have some problems (no MRI, steriods? emerg surgery?). Apparently there is small (theoritical) risk of radiation scatter to ovaries, but no issues documented. But at my age, i already have increased risks of birth defects... so do i want to increase this even a tiny tiny little bit?? (i did have a healthy little girl in March of last year at age 38). Also, there is that 5-10% chance that the rads dont work and then i am in bind if pregs... and of course there is the debate about surgery after rads. I do have a med-large 2.2x2.9cm AN.
Another reason for considering surgery is that i have access to a great surgurical team (a tumor guru n.surgeon). He has done 200 (80 retrosigmoid, which is the method he recommends as mine is in the CPA and i have good hearing), which might not sound like a lot to some of you (as i know there are some docs in the US with many more, even thousands i think), but in Canada, we have 10% of the population (so 10% of the ANs) and people dont travel out of province/state for treatment unless it is not available in your home province. Also, I can take the 2-3 months off work to recover, i have a great hubbie and my mom a few hours away.
I will be meeting with the surgeon next Thursday so i will have my final Q's and hopefully i will be firm after that. I still have told only a handful of people, so i am really running this decision down to the wire.
If you have any thoughts on this mess i am, your are running out of time to say something!! HA!
Where is that calendar anyway??? The one that we can load our dates into??
OH, and i had a follow up MRI a week ago and it showed no growth since Janauary.
Maybe i should flip a coin??????????
UG!!!!!!!!!!!
Trish
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Trish -
Before I start, I want to stess that this my opinion - and only my opinion.
I understand why you'd want to do the surgery in light of your wish to get pregnant. From what you are saying about the radiation, it sounds like it wouldn't fit into your plans. However, I would not have the surgery until you are absolutely sure that its the best choice for you.
Going into my surgery, I was 100% certain that it was the right thing for me to do. I can't imagine being on the fence about my choice as I was wheeled into surgery.
The calendar link is at the bottom of Steve's (sgerrard) signature line.
Jan
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Trish,
Take your time and make the "perfect" decision for you. I was rushed into surgery by my Dr who told me my tumor was very large(1.8 cm is only the beginning of medium and no symptoms) I guess he didn't go to his class for the medical updates on these things!!!!!
You can always reschedule your surgery if you're not ready. it's your head and they can't force you to do anything you are unsure about.
Best of luck with your decision. We're all praying for you.
Dani
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Calimama - As everyone has said over and over on this website, all of us have to make our own decision as to what treatment is best. I chose surgery. One of the reasons I chose surgery was because I felt I was farely young, but not too :) - 50 - and healthy. If I chose wait-n-watch or radiation I was concerned I could possibly be faced with a surgery down the road when perhaps I was not so healthy. I am the type of person who needed rid of it in order to move on and felt surgery was the best way to accomplish this. I did my footwork and am very confident in the team of doctors I chose. I had the translab surgery on 3/21/08 and am now recoverying. My surgery was a complete success and I am now on my way to moving on. As I said, we all have our own reasons for the choice we make and given the fact that you are teetering I thought I would share. Best of Luck and I will pray for your serentity.
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Trish:
These decisions (surgery or radiation) are always difficult and with your desire to become pregnant soon, this adds another dimension. It appears as if you've weighed all the variables and are just about at a final decision. No one can make that ultimate choice for you but we can offer our support in whatever you decide to do. The final meeting with the surgeon should clinch your decision, one way or the other. Of course we all realize that there are inherent risks involved in microsurgery as well as radiation.
As Dani stated, it's wise to have a surgery date because you can always cancel it if you change your mind. My initial surgery date - slated for just days after my diagnosis due to brainstem involvement- had to be canceled due to a pre-op-discovered cancer scare that turned out, thank God, to be a false alarm. I was immediately placed back on the surgery schedule and had my retro surgery within 10 days. I think you know how it all turned out, including the follow-up FSR. :)
Whatever your final decision, I wish you the best possible outcome and a rapid and complete recovery so you can become a mama...again. :)
Jim
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AAAARRR! ahoy and shivver me timbers! Gonna have to get me some more pirate sox fer the likes of all of you wenches! Pirate sox is what we wears for good luck for the ones goin in tp zap or scoop those little brainboogers outta those loverly noggins of yours. Is Pooter a Wench or a Scallywag? This forum is gettin so crowded, I just lose track sometimes!
Best of luck to all of you and smooth seas and fair winds and well.
Remember a little Piratittude goes a long way!
Love,
Capt Deb(http://i235.photobucket.com/albums/ee60/Captdeb_photos/pirate2.gif)
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Capt Deb -
Pooter (Brian) is a scallywag :)
Nothing personal, Pooter ;D
Jan
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Hey Trish-
Wow - you've been a busy mama! Like others have said, just make sure you are comfortable and confident with your deciision. In some ways, it was easier not to have choices - made it easier for me.
Keep us all posted, and update the calendar when you have a final date, okay?
Debbi - boogerectomy minus FOUR!!!
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Looks like my pirate sock are going to get worn out BIG time this month! Wishes of wellness to you all that have upcoming treatments!!! I'm cheering you on!
Phyl
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All: Thanks for the well-wishes! I, too, have someone lined up to post after my surgery to update you guys. Actually, I have 2. Either my wife or a co-worker will be posting updates for me. :D
Phyl: None taken. I actually shaved my head clean again today. So, give me a large, gold hoop ear ring and I'd look kinda like Mr. Clean. Haha. :D
Trish: I can't really add much to what others have told you. I would think that which ever route you go, you would still probably have to wait a year to get pregnant. With rad treatments, the reason is obvious. But, for surgery, it's possible they'll get in there and only do a partial removal and have to follow up later with rad. Whichever route you decide, you know that everyone here will support your decision. It's a very personal decision and nobody here will judge it. I'm like some others in that my surgery date can't get here fast enough. I just want to get it out and move on. I did my homework and am 100% confident in my decision and the surgical team. I refuse to second guess my decison even if others around me do.
Regards,
Scallywag Pooter (Aye Capt!!!) :D
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HAVE I GONE COMPLETELY MAD?!?!?!?
If you have any thoughts on this mess i am, your are running out of time to say something!! HA!
OH, and i had a follow up MRI a week ago and it showed no growth since Janauary.
Hi Trish,
I can't pass up an invitation like that, so here is my take on it all.
I think some of your concerns are legitimate, and some are not really relevant. Anything below the 1% range is unlikely (i.e. surgery after radiation, the first reported incident of radiation striking your ovaries), so don't worry about those, focus on the main things.
If you successfully had a child at 38, there should not be much difference between having one at 39, and having one at 40. It's not like the Cinderella story, where the lights go out at midnight, or something. It just gradually becomes more difficult. Either way you are undergoing a major medical procedure, and you should probably take some time for recuperation afterwards, regardless of which way you go.
At 2.9 cm, and located in the CP angle, your AN is at the large end of the scale for radiation, and a classic case for retrosigmoid surgery. I would be concerned about a brainstem effect from radiation; and from a hearing nerve and/or facial nerve effect from surgery. I would wait six months after surgery to get pregnant, and a year after radiation.
If your AN was say 3.5 cm, you would almost certainly be doing the surgery, so no, you're not crazy, it is perfectly sensible choice of treatment. If it was just 2 cm, you would probably do the radiation treatment instead. You happen to be on the borderline - maybe you need that coin after all.
Have a good surgery. ;)
Steve
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Phyl: None taken. I actually shaved my head clean again today. So, give me a large, gold hoop ear ring and I'd look kinda like Mr. Clean. Haha. :D
Well, Mr. Clean, my kitchen floor is really looking ecccchhhh right now..... got a new mop..... you can practice on cleaning my kitchen floor before all the scallyways need to swap the deck! :)
(I bet it looks great!!! How's your wife enjoying "the new look"?)
Phyl
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Phyl,
Wife likes the look. She actually likes me with hair better, but I wore it bald for a couple of years up until just before diagnosis. I grew it out because she liked it. Then, I got the diagnosis and felt the need to shave it again. When I wear it this way, I'll shave it clean and then let it grow for a week or two then shave it again. I figure after shaving it clean this weekend, the length will be just about perfect for my stay in the hospital (not too long that I feel the need to wash it, but not so short that it catches on everything). There is a method to my apparent madness.
So, where's that new mop so I can break it in on your floor? ;)
Brian
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Brian, if you look at my frappr page (see my sig line below), you'll see pics (scroll down to bottom left) to see my bloke, just about bald.... he's grown it in since, as well as moustache/goatee, but like you.... he's been "bald" for a while.... I bet it looks great on you!
Ok, got me a new mop! Got me the Mr. Clean... got me the dirty kitchen floor....I'm set! :D
Phyl
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Well, personally, I like my hubby best with a buzz cut - but I think he's the " bees knees" no matter what! I'm a lucky wench!
And, also getting pretty nerved up with only two days until .... boogerectomy!!!!!
Debbi
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I met with my family doctor yesterday, first time since i asked her to send me to see somebody about my hearing loss. She had received a letter from the surgeon i am scheduled with, explaining the diagnosis, treatment, and prognosis. She said she nearly fainted when she read it, and that in 18 years she had never seen this before. I have known her for 7 years and she was disappointed especially because she knew of my baby wishes.
I hope i have done some good in that my FD is more educated about ANs and will know that when a young person (i was 36) comes complaining about SSHL (i am sure you guys can figure this one out!) and tinnitus, it MAY BE A TUMOR AND NOT ALLERGIES!
Anyway, she said rightfully that it was a very tough and personal decision. But "if i was her sister" she would encourage me have it removed. It really did help me move that much closer to "comfort" on this... I am really getting there.
So i will put my 12th date in the calendar and get going with all the other preparations (time off work, dealing with day care, etc).
Steve ... thanks for your thoughts on this. I value these and find comfort in them.
Pooter... also thanks and best wishes for your surgery!!
Debbie ... nearly there... we will all be with you in spirit.
Thanks to one and all.
Trish