Author Topic: decision time...well maybe!  (Read 4118 times)

***Leigh***

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decision time...well maybe!
« on: March 04, 2006, 12:29:49 pm »
well here goes my first real post. ive been reading for a while and thank you all loads for all the usful info and sharing of your experiences, its been extremely helpful. ive been wait and see since 2003 but found out grown a little, only 9mm though. how do  you decide what to do? leigh

Battyp

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Re: decision time...well maybe!
« Reply #1 on: March 04, 2006, 01:01:48 pm »
Leigh I didn't have much choice to make as mine was a hurry and get on a table thing.  I know Ppearl12141 has been doing lots of research and will share.  For me, if I had to actually decide what to do I'd do the least invasive first if my tumor was small.  Trust your gut you know how you feel and what problems you're having.

Big decision!  Know we're all here rooting you on and will help in anyway we can.

Michelle

GM

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Re: decision time...well maybe!
« Reply #2 on: March 05, 2006, 06:39:28 am »
Leigh,

I would suggest that you research all treatment methods (which you've probably done since you've been a W2 (watch & wait) for a few years) , and then make an informed decision on which treatment you have determined to go with, and in your case...when to have it done.  Probably a good idea to check with your health insurance to see what they cover and any processes (promission and appeal processes) that you'll need to get familiar with.

Some people wait until they have symptoms that they can no longer deal with.  Others point out that the smaller...the better..to have treated now.  (better chance at saving hearing, less collaterial damage chances).  In both surgical and radiation treatments.

Like you've read in here before...you have to trust your gut.  You'll know when it's time.  And we'll be here to support you and your decision.

Gary
Originally 1.8cm (left ear)...Swelled to 2.1 cm...and holding after GK treatment (Nov 2003)
Gamma Knife University of Virginia  http://www.medicine.virginia.edu/clinical/departments/neurosurgery/gammaknife/home-page
Note: Riverside Hospital in Newport News Virginia now has GK!!

ppearl214

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Re: decision time...well maybe!
« Reply #3 on: March 05, 2006, 11:37:00 pm »
Leigh,

I'm in the same boat all the way around.. same size, wait/hold, etc.

I have done a great deal of research on all options. I've spoken to many professionals and many on this site that have had all forms of treatments. I am meeting this week with those that I have narrowed my decision down. I'm making my decision on:

1.  the size of my growth
2. My age
3. My current symptoms
4. Recommendations of numerous professionals
5.  Experiences shared with me by many on this site
6.  My gut
7.  Talks with my family and friends
8.  Lots of prayers.

I have a feeling you will know when the time is right. If you have options, take the time (like I did) to weigh it all out.  Talk, listen, read. Not overdose yourself on info as it will drive you crazy, but just enough to help you make a well-informed decision. Then follow your gut.

Be well,
Phyllis
"Gentlemen, I wash my hands of this weirdness", Capt Jack Sparrow - Davy Jones Locker, "Pirates of the Carribbean - At World's End"

carolk

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Re: decision time...well maybe!
« Reply #4 on: March 09, 2006, 04:45:09 pm »
Hi Leigh,
   Great question.  My ENT seems to use 1cm as the sort of "magic number" by which time it's necessary to do something.   Everything is a trade-off. . . Miy AN is just 6mm (grown from 2 mm when first discovered "accidentally" two years ago).  I'm 52, and I'm looking into radiosurgery--but would like to continue to wait as long as possible--at least until my next MRI in one year.  If it keeps growing, I'll probably opt for radiation then. . .or maybe keep waiting and hope that growth slows stops.  So far I have no symptoms, so that makes it hard to think about undergoing a procedure that could have negative consequences.

minnkris

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Re: decision time...well maybe!
« Reply #5 on: March 09, 2006, 05:57:52 pm »
I got so much useful information from this site alone.  My ENT sent me to an ear surgeon who had trained at House. Of course, he was all about surgery (scary). But, then my family physician sent me to a nuerosurgeon who pooh-poohed the idea of surgery for such a small AN (8mm x 6mm). Well, needless to say, I was all over that.

But of course, like everyone says, do your research and make the best decision you are comfortable with. The support you will receive from this site alone is fantastic.

Good Luck
8mm x 6mm AN left side
GK August, 2005

Kathleen_Mc

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Re: decision time...well maybe!
« Reply #6 on: March 10, 2006, 02:28:04 am »
Leigh: It's a very difficult decision and a very personal one. Research on the web, get a few doctor's opinions if you can (from those pro surgery and those pro radiation) and then think think think (read that sounding like Winnie the Pooh and tap your temple while crossing you chest with the other arm).
For me the first time around it was "hurry up and jump on the table and let's hope you live to get offa it". I can clearly remember for a number of years I was adamet that if I got another tumor I was not having surgery ever again THEN.....
When the second tumor (or regrowth they aren't really sure which it was) was found I had done some reading on gamma knife and my husband was ready to remotage the house for me to go to the US to get zapped. It was determined I should W2 until I was socially ready (I want to have another child etc). During the years of monitoring I slowly became a psychological basket case (and they wonder why that's the craft of choice for psych. patient's in the movie's!) and it became necessary for there to be treatment to the tumor before I lost my mind in anxiety (I just couldn't handle there was something growing in my head and it almost killed me once before....don't know why I'm just funny that way). I requested my neurosergeon do the surgery, he refused as he felt it was not medically indicated and he couldn't justify it....I went to a neurtologist and had it removed, I was offered Gamma knife (we have it in Toronto now) but in the end I declined opting for surgery and in the end I am pleased with my choice.
My point is that as time goes along you may find your opinion of what is right for you changes and that's o.k., look at all your options and when the time comes you'll be comfortable with your decision.
Kathleen
1st AN surgery @ age 23, 16 hours
Loss of 7-10th nerves
mulitple "plastic" repairs to compensate for effects of 7th nerve loss
tumor regrowth, monitored for a few years then surgically removed @ age 38 (of my choice, not medically necessary yet)

***Leigh***

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Re: decision time...well maybe! Crystal ball anyone?
« Reply #7 on: March 19, 2006, 02:17:19 pm »
Thank you all so much for your support.  I go to see the radiotherapist at the beginning of April, just to find out some more information about the procedures.  I'm still reluctant to do anything and risk causing any additional symptoms.  I'm happy (well as happy as you can be) with my current symptons (loss of hearing  in left ear and tinitus) but dont let it affect my life and feel that opting for an operation is likely to give me more symptoms which are less easy to cope with.

My one big concern about leaving it to wait and see is I am only 27 (I dont feel old, but my neice thinks is extremely old... but then again she thinks 14 is really old and that is when she will get married!) is that it grows and it causes me more problems because it is bigger when I do have to have treatment.  In a lot of ways I wish it was clear cut and the consultant could tell me what I need done but then again at least I do have options and to some extent feel in control. 

As with you Kathleen my original "gut feel" was get this thing out of me, but having done more research, and I guess come to accept my AN, that scares me more.  The thought of being away from work and loosing some of my independence for months just does not bear thinking about.

Radio treatment also concerns me due to the lack of knowledge of long term effects.  At least my local hospital uses your teeth and gum shield to fit the frame rather than screwing holes in my head.   Will it cause a malignant tumour in future for example. What questions should I ask the radio therapist?  Will it cause lots of hair loss or just the bit where the rays go in?

Also if you wait and see then treatments might have further advanced by the time I actually "need" to do something, which cause less side effects and would be better. Then again, I wait for a while, and then I have children and its not just me that I have to think about and there are a whole load of other issues I dont have at the moment!

My gut is telling me wait and see for a bit longer but does that mean I am just putting off the inevitable for a bit longer.  I dont normally shy away from decisions but this is no doubt the largest decision I have ever made.   ???

Hey ho, at least I have the wonderfull support of my boyfriend and family that I can talk through my concerns with.  However none of them can tell me what they think I should do.  I know its my decision and I have to be comfortable with what I decide but its a hell of a decision to make with potentially life changing consequences what ever I decide.

Does any one have a crystal ball so that I can see what would happen with each of the options?  Wouldn't that just be great!!!!  :)
 
L

Kilroy1976

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Re: decision time...well maybe! Crystal ball anyone?
« Reply #8 on: March 20, 2006, 09:25:22 am »

My one big concern about leaving it to wait and see is I am only 27 (I dont feel old, but my neice thinks is extremely old... but then again she thinks 14 is really old and that is when she will get married!) is that it grows and it causes me more problems because it is bigger when I do have to have treatment. 

Radio treatment also concerns me due to the lack of knowledge of long term effects.  At least my local hospital uses your teeth and gum shield to fit the frame rather than screwing holes in my head.   Will it cause a malignant tumour in future for example. What questions should I ask the radio therapist?  Will it cause lots of hair loss or just the bit where the rays go in?


Leigh:

One of the big issues for people our age is the number of years that we likely have left. Even given the slow growth rate of ANs, if you let them grow for another 50 years, they have plenty of time to turn into real monsters. Based on that line of thought, it was important to me from the beginning to take some action, either surgery or radiation.

I don't think you need to concern yourself so much with the possibilities of hair loss. I've read posts from a few people who temporarily lost small patches of hair, but the posts always seem to downplay the significance of that. Radiosurgery/radiotherapy is NOT the same as the radiation that a cancer patient receives. Unless the target of the radiation is located very close to the scalp, which ANs generally are not, radiosurgery typically does not cause hair to fall out. I personally lost more hair when I took my baseball cap off so that they could fit the head frame than I did as a result of the radiation. ;)

There are studies posted elsewhere on the board regarding the long-term effects of radiosurgery. The Gamma Knife has been in use for more than 40 years, and there are decent studies available. If you read them, I think you'll find that the likelihood of developing a malignancy is very slim.

I don't mean to say that everyone should have radiosurgery whether they need it or not. There are dangers to it, as there are dangers to any course of treatment for an AN. But usually the potential side effects from radiosurgery are the same as those involved with microsurgery (loss of hearing, facial nerve damage, headaches, tinnitus, etc.). You're probably not going to end up as a glowing bald woman with super powers. Best of luck in your decision!
1.8cm AN
Linac
December 13, 2005
Shands Hospital--University of Florida

ppearl214

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Re: decision time...well maybe!
« Reply #9 on: March 20, 2006, 09:39:38 am »
Hi Leigh,

Glad you are doing all the right things... and you really are.  I don't know if you have read the "crying and confused" thread here but it shows my journey of making my decision. Like you, I was VERY nervous in leaving the "wait/hold" stage to treatment.  I'm only 45 and we've been watching my AN for just under a year. All the docs I spoke with shared with me this past month that "if you are having symptoms, it's time for treatment". So, off I went into researching everything and anything. I do believe I have left no stone unturned when it came to researching all radio-treatments (radio surgery, radio therapy, etc).  I'm more than happy to share any of my research with you. If it can help, all the better.

Hang tough.. hang in there. We are here for you just as much as this motley crew has been here for me :)  And trust me... the support everyone here has given me (via email, phone calls, etc) has been overwhelming. I am now truly at peace with my decision (treatments start 2 wks from today) and I'm ready to rock and roll. I truly do believe all the research I have done has now given me inner peace with what lays next.

Phyllis
"Gentlemen, I wash my hands of this weirdness", Capt Jack Sparrow - Davy Jones Locker, "Pirates of the Carribbean - At World's End"

 


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