Wondering

[Tracy]

  I have an AN that is 1.5 x 0.9 x 0.5.  I met with my ENT @ Standford yesterday.  He basically feels that surgery is the best option for me because I am 37 (young) and healthy.  I have only 56% voice discrimination left in my AN ear. (So, he says that losing all the hearing will happen anyway with or without surgery.)  I having ringing in both ears (louder in AN ear).  I did the "watch and wait" for little over a year.  First 6 months MRI showed no growth.  Last MRI showed a significant change.  I'm a teacher and a mother of a 6 year old.  Having surgery just doesn't seem like an option for many reasons besides the two I mentioned.  I'm really leaning towards the radiation. I haven't been able to talk with anyone in that dept. because of the New Years holiday- but I understand Standford does the Cyberknife procedure. I've done a lot of on-line reading and have SO many things running through my head. I didn't realize that there are side effects with this as well... and would like to hear from people that have had the CK and hear about what the "after" was like for them.  My ENT didn't mention anything about side effects (probably because he was focused in the surgery).
Thanks-
Tracy
(Completely a 1st timer here!)

[sgerrard]

Hi Tracy,

I did CK in Sep 2007, and have been fortunate not to have significant side effects since then. There are some CKers, though, that do go through some swelling issues, and sometimes dizziness. It does vary by person.

At 56% word recognition, your hearing is in the AN ear is iffy, but it might make it through CK in some sort of usable condition. Mine was about 85% going into treatment, and with a hearing aid, it is well worth having.

Contact the office of Dr. Chang at Stanford, and see if they will take a look at your MRI and audiogram and give you an opinion. They are a great place to get CK.

Welcome to the forum.

Steve

[DebbieL]

Hi Tracy,

I had CK done at Standford 5 months ago with Dr. Adler.  I go in for my 1st post MRI on the 12th.  I still have problems I had before CK but the only change is I now have increased headaches which are being dealt with by medication which helps.  Good luck with your decision.  I know it's not an easy one.  I went back and forth trying to decide which route to go before deciding on CK.  Do your research and don't be afraid to ask the doctors any questions you have. 

[Jim Scott]

Hi, Debbie:

If you're not comfortable with having AN removal surgery and there isn't a true medical impediment to undergoing the Cyber Knife procedure, you should definitely consider it.  However, irradiation treatment can and does have after-effects; sometimes mild, sometimes not-so-mild....just like surgery...but without the risk of infections and other surgery-related problems.  However, radiation treatment, for all it's advantages, is not a panacea.  If radiation actually posed the promise of 'no side effects' for those whose AN was small enough to benefit from radiation, who would ever want surgery?  The harsh reality is that radiation, although non-invasive, does carry it's own set of risks and (possible) side effects.  You'll want to do even more research into Cyber Kinfe and learn as much as you can as you make a treatment decision.  Steve ('sgerrard') offered some good advice that I trust you'll take. Please let us know what you ultimately decide to do. 

Jim

[Keeping Up]

Hi Tracy

And welcome, I am hopefully many many many months or years behind you.  I have just recently been diagnosed with a very small AN (5mm x 8mm), am 37 years old and have a 6 year old ( a girl, born May 22 2002).  I also have a 4 year old, almost 3 year old and 18 month old - I also work outside of the home in a job that isn't exactly mild manner.  The idea of surgery has me terrified but I am certainly not at all comfortable with the nudges of discussions from the ENT re radiation either.  I have a long way to go and am trying to guage many other opinions as well.

Can't offer much advise other than please please please share what you learn at the radiation oncologist about CK (or GK - I am Cdn so only have that option).  I would encourage you to track down on MK on the board (another fellow Cdn) who pursued GK - she can probably offer some insight into procedure - she is also our age (I will guess) and has 2 little ones.

Good luck - stick around, this crowd is very very helpful.

Ann

[leapyrtwins]

The idea of surgery has me terrified but I am certainly not at all comfortable with the nudges of discussions from the ENT re radiation either. 

Ann -

IMO one of the reasons treatment - radiation or surgery - is scary is because just being diagnosed with an AN is scary.  If you were like me, you probably just assumed your symptoms were "no big deal" and that they'd either "go away in time", or turn out to be "nothing". 

I was initially terrified of surgery, in fact I told my neurotologist at my first consultation that "there was NO way I could do THAT !!!"  but ironically, in the end, that's exactly what I did.  I ended up being very confident in my choice - and in my doctors - and I've never looked back or felt I made a bad decision for me.

IMO the key to deciding on your treatment option is to be as informed as you can be.  Do your research, weigh all the possible pros and cons of each procedure, ask all the questions you can, and then choose what is right for you.  Education goes a long way towards alleviating fear.

I don't know if anyone else has recommended it to you, but you should contact the ANA and ask them to send you their informational literature.  It's very well written and easy to understand.  Unfortunately I was unaware of the ANA prior to my surgery and I think having their literature would have really helped me understand things.  While my doctor was really great about "coming down to my level" and answering all my questions, I found that at times his explanations, while very clear to him, were filled with words that made no sense at all to me (I'm not one for medical terminology) and the anxious state I was in made me miss a lot of what he was telling me.  If I would have read the ANA literature prior to my surgery, I think I would have helped me immensely.

Jan

[mk]

I would encourage you to track down on MK on the board (another fellow Cdn) who pursued GK - she can probably offer some insight into procedure - she is also our age (I will guess) and has 2 little ones.

Ann

Well, here I am.

Tracy, as you are obviously finding out, making a treatment decision is probably the most difficult stage in our AN journey. I had similar reasons as you which led me to choose radiation (GK since CK is not available in Canada), although for my particular case, it was not the most recommended option.
There are risks no matter what you chose, you have to do your research and decide which risks you are most willing to take. I have been extremely fortunate in my case, at least until now - no issues whatsoever, no time off work (although I did take it easy)  and the results of my 6 month MRI were very encouraging. You can look up my posts, and also feel free to PM me.

By the way happy new year to everyone, with wishes for quick recovery for all that have received treatment recently and wishes for a succesful outcome for those who will seek treatment in 2009.

Marianna

[mrgarlic]

Greetings and welcome to our world. Please, someone correct me if I am wrong. I had surgery and no regrets. My tumor is gone, no more, by by. As for radiation I was told that if you go for radiation and it doesn't work, it will make surgery later much more difficult. Also for radiation, that does not remove tumor, it only stops it growth.     Larry

[leapyrtwins]

Larry -

I, too, had surgery and have no regrets.  My tumor is gone - and hopefully it will stay that way.

That said, although you and I both chose surgery, it isn't everyone's choice and everyone must make their own decision based on what is right for them and based on their doctors' recommendation.

Sometimes radiation doesn't work, but there has been much debate on this forum about whether surgery after radiation is more difficult or not.  I think in the end, someone (maybe Mark or Steve ?) pretty much proved this theory wrong.  But I think the debate still continues and that doctors have differing opinions.

You are correct, radiation does not remove the tumor, it only stops it's growth.

Jan

[Tracy]

Thank you to everyone who has offered insight.  I appreciate all the things for me to "mull-over".  At this point I "think" I'm pretty certain that Cyberknife is the best course of action for me. Forgive me for sounding like I know what I want to do and yet am still asking for help.  Talking (writing) out my thoughts with others with AN helps so much more than talking with my mom, husband, or friends who mean well but simply don't understand.

I know from research that Dr. Chang and his team in Standford are top notch. The choice of "where" is not concern.  I do worry about the idea of radiation not working and then what.  I am encouraged as I have found in more than one reference that Standford achieved control rates of around 99% with the Cyberknife.  Boy I would LOVE to have the peace of mind knowing that it is gone... but with every surgery there is the small % that have to have a bit of the tumor left behind to preserve the facial nerve.... and I can't count on not being that small %. (We all know how rare AN are.) So, if I'm the small % that must leave some tumor then there goes that peace of mind and I'd still be looking at a long road to "normal" whatever that may look like in my case. I am hopeful that medicine in the future will only improve... IF it grew back (as in about 10% over 10 years) then perhaps there would be something better out there. I have read about people feeling terribly tired, having headaches from the "full" feeling, having issues with their balance that gets worse before getting better... but all these possible side effects would occur with surgery too.

I speak with Iris Gibbs tomorrow.  She is the assistant professor of Radiation Oncology.  I gather that she is the starting point that leads to Dr. Chang.  I know that because her job is radiation that she'll probably have a more "rosy" picture of CK but I'm hopeful to gather more information.

As always any thoughts or experiences are much appreciated!
Thank you all.  I'll keep you posted!
Tracy

Steve and Marianna... I want to be as fortunate as you! God willing I will be.

;)Ann my daughter is 6 and born on May 29th, 2002.  She was due on May 21st/22nd! :0)  What a small "AN" world!

[mk]

  I do worry about the idea of radiation not working and then what. 

I guess this is always a concern with radiation. When I mentioned it to my husband (who has a way of thinking "straightforward") he said "if this happens you will simply have surgery, which you would have needed anyway". So in a way I saw it as "buying time", hoping to arrest the growth so I don't need surgery right away. Of course there is always the question of surgery beeing more difficult after radiation, but again I haven't seen convincing evidence of that. Some surgeries after radiation were relatively easy (for example Kathleen on this board) and some were difficult with "sticky" tumours even without prior radiation.

Marianna

[Tisha]

Hi Tracy,

Sorry for chiming in so late.  Your AN is a similar size to mine.  Like everyone says, the choice whether to have radiation or surgery is personal depending on many factors. 

One of the reasons I felt comfortable choosing STanford is because Dr. Chang is also a neurosurgeon.  I read that he performs 50/50 surgery/radiation.  Therefore, I don't feel like I was swayed in anyway towards radiation vs. surgery.   I will be leaving soon and will report back my experience there and of course, all my symptoms when and/or if they occur.

Good luck in making a decision.  It's not easy, but I feel a big cloud lifting after I made mine.

One more thing.  If the radiation doesn't work the first time, you can radiate again with Cyberknife.  I asked that of Dr. Chang.  Not that you wouldn't consider surgery, but at least you have the option to retry it.

Tisha

[hruss]

Hi tracy!! and welcome!

i had surgeries too! you are wondering whether surgery vs radiation is the better choice - so i think that you have to reach that decision on your own, after reading and asking a lot of questions! i am here - if you want information just PM me (it will be easier to understand that you need me)
the question you have to answer to yourself is:

Do i want the bugger in my head or taken out once and for all (I hope )??

i think this is the major difference b/n the two methods.

And yes, mrgarlic, as far as I read and my neurosurgeons explained to me, a surgery after a radio treatment is even a way more COMPLEX!

Ask all the questions you have! you will much better when you reach a decision on your own in which you are 100% sure!

Good luck in your research
Hrissy

[RCB]

Tracy...i was diagnosed in May of this year and had surgery in July. My AN was only 4mm. I never considered radiation. I wanted it out and not have to deal again with the potential of it coming back.  I did look at Stanford, as I have a relative who is a doctor and works there, however, the place to go is House Institute. I assume you checked them as well.  I would be happy to talk to you and let you know what to really expect.  My biggest complaint is the doctors don't really tell you.  Whatever you choose, talk to the nurses, they will tell you the truth about recovery.  I'm just about "there", but its taken a long time.  Feel free to contact me and i'd be happy to talk to you.

Best,
Bob

[mindyandy]

HI Tracy
I am 31 years old dx Sep. 2007. I had CK done January 08 (1 year ago  ). My AN was 1.4 x .09 something like that. I also had a hard decision. My experience thus far is I had swelling issues around 5-9 months after treatment. Sx were ringing & slight pressure & slight numbness...(strange). At my 9 month MRI it showed swelling. I just had my 11 month MRI and it showed some shrinkage  . I'm hoping it will continue down that path.
Whatever you choose to do I do hope you feel comfortable with it. I found out about my AN right after I had my 2 child. So I do understand.