ANA Discussion Forum

Treatment Options => Radiation / Radiosurgery => Topic started by: novagirl on August 12, 2009, 02:38:06 pm

Title: Radio is not for young people???
Post by: novagirl on August 12, 2009, 02:38:06 pm
Hello everyone,

I've just recently been diagnosed with an AN (right-side, approx 12mm x 4mm x 5mm, mostly located outside of the IAC). Have been looking at my options and have definitely visited this site quite a bit (already received my informational packet from ANA and have gotten in touch with the local support group).  First of all, you are guys are great! Thank you so much for being around and posting on here. As many before me, I would like to express my gratitude for helping me through the first several days after being diagnosed. Even know I personally wasn't posting anything, I WAS READING A LOT!!! And it has been a tremendous help.

So now, on to my question. My ENT and the neurosurgeon he works with are both recommending surgery. When I asked about radio, they both said NO and cited my young age as the determining factor (I just turned 33). They said since there is no way we can tell what the long-term side-effects/complications could be, they strongly recommend AGAINST radiosurgery. I do have an appointment next week with the CK team in Georgetown (I live in Northern Virginia), but I was wondering if any of you had similar/totally opposite responses from your doctors. I was leaning more towards radio for a couple of reasons: (1) I am a single mother with a very active 5 year old who is starting kindergarten this year, and I really didn't want to be dealing with post-op issues if I could avoid it; (2) quality of life - I still have all of my hearing and no symptoms other than occasional (very rare) vertigo. I've also read posts on www.cyberknife.com, which looked very encouraging.

Anyway, this is my "coming out" post :). And looking forward to reading whatever you have to share.
Title: Re: Radio is not for young people???
Post by: Jim Scott on August 12, 2009, 02:48:29 pm
Hello and welcome Novagirl!  Thanks for joining us (although I wish you didn't have a reason to do so - an acoustic neuroma diagnosis).  

I'm pleased to learn that this website/forums have been helpful to you.  Unfortunately, many neurosurgeons and ENT's still cling to the concept that irradiation treatment for for an acoustic neuroma is not recommended if you're much under 50 - or 60 or even 70, depending on the doctor.  Although this may have made sense at some point, it has been shown to be inaccurate.  I'll let others offer the details as to why.  So, your doctors reaction to radiation was drearily predictable.  However, as you've already seen, not every neurosurgeon or ENT holds this outmoded view.  Definitely check out CyberKnife treatment.  

Jim
Title: Re: Radio is not for young people???
Post by: Kaybo on August 12, 2009, 03:33:44 pm
WELCOME Nova Girl!!

I can't really add to the debate, but just wanted to welcome you!!  I'd be more than happy to chat with you though if you have any questions or concerns or just need an ear.  I am 39 and had surgery when i was 25 so I have kind of been at this a while!  Just PM me your number if you'd like!

K   ;D
Title: Re: Radio is not for young people???
Post by: Vivian B. on August 13, 2009, 05:05:22 pm
Hi Novagirl,

Welcome! When I saw my surgeon, I automatically assumed that a surgery date would be scheduled. Instead he told me not to make any hasty decisions and to see a colleague of his a Neurosurgeon specializing in radiation. When I saw his referral letter to the Neurosurgeon it said to consider me for radiation assessment. The surgeon explained that there were a lot of risks involved with surgery and why go through it if I had an option that had small risks if any. Also regrowth could happen with both radiation and surgery. When I saw the Neurosurgeon he had a radiation specialist with him who explained the radiation risks factors and they both recommended W and W and indicatedli that from now on I would be followed by their office. I am 46.

Hope this helps.

Vivian
Title: Re: Radio is not for young people???
Post by: Tumbleweed on August 14, 2009, 12:31:44 am
Hi, Novagirl:

More and more doctors are recommending radiation instead of surgery regardless of age, as there are less risks (especially to the hearing and facial nerves) and far less recovery time with radiation. That said, the choice of treatment is a very personal matter.

The best  course of action is for you to get opinions from three or more doctors who (collectively) practice neurosurgery, GK, CK and "regular" FSR. They'll all have their biases, but you might discover a prevailing, if not unanimous, opinion in their responses. Listen to what each has to say. Weigh the risks vs benefits of each approach. By the time you've received three or four (or more) qualified opinions, you will probably have a strong gut feeling on which type of treatment you want. I got six opinions! A lot, yes, but by the time I got the 6th one, I was already crystal-clear about what treatment I wanted. That peace of mind was invaluable to me.

Several doctors offer free review of your MRI and other tests and a consultation (either written response or via a personal phone call to you):

Dr. Steven Chang (my doctor) at Stanford Univ Medical Center (the facility with the most experience with CK)  is both a neurosurgeon and a CyberKnife practitioner. He will review your case for free. His email address is: sdchang@stanford.edu.

Dr. Derald Brackmann at House Ear Clinic (California) will also give you a free consultation. Many people see House Ear as biased toward neurosurgery, yet Dr. Brackmann recommended I get radiation (specifically GK, but I chose CK instead) once I stressed to him that hearing preservation was vitally important to me. Make sure you explain your goals and concerns thoroughly with every doctor you consult with, as that may influence their recommendation.

Univ of Pittsburgh also gives free consultations; they are the most experienced facility for GK in the US.

Good luck and remember: you are the boss. It's your body, your decision. Take your time. Research your options thoroughly. Then follow your gut instinct. You'll come through just fine, with no regrets.

Best wishes,
Tumbleweed
Title: Re: Radio is not for young people???
Post by: novagirl on August 14, 2009, 06:47:04 am
Thank you for everyone for welcoming and for your comments. One thing that I definitely realized by now is that I should take my time and get several opinions. The first doctor I saw pretty much said: you need surgery and soon, and that's it. So it's definitely nice to know that there are other options and that this is not an emergency (in my case). I'll let you know what the folks at Georgetown will tell me, but I am also thinking of contacting HEI and possibly Stanford (thank you Tumbleweed for the contact details!) 
Title: Re: Radio is not for young people???
Post by: mk on August 14, 2009, 07:48:44 am
Hi Novagirl,

1.2 cm is still small, and you certainly don't need to rush into anything. Like everyone else said you have plenty of time to consult and reach an informed decision. The cyberknife forum can also be very helpful, and the doctors will answer any questions you have.

It is true that many doctors recommend surgery for younger patients and there are many valid arguments for this. The counterargument is that some young patients lead very busy lives, and may have to care for very young children. I can certainly sympathize with this, that's why I chose to have GK, because I was afraid of the potential side effects of surgery affecting my capability to care for my kids. Others chose to W&W, to try to get through the difficult period of child rearing and take care of this afterwards.

In any case, you have plenty of time for research. In the meantime also make sure to request a follow up MRI (usually 6 months is recommended) to get an idea about what is the growth pattern. Feel free to PM me if you have any questions.

Marianna
Title: Re: Radio is not for young people???
Post by: novagirl on August 14, 2009, 08:05:51 am
Quick update:

I did post the same question on the cyberknife forum and got a response from Dr. Medbery (in record time I might add!!!!). For those of you who are considering the pros and cons of CK, it will probably be interesting to see it.

http://www.cyberknife.com/Forum.aspx?g=posts&t=2070

Title: Re: Radio is not for young people???
Post by: Jim Scott on August 14, 2009, 09:35:11 am
Novagirl ~

I'm glad you checked out the CyberKnife forum and received a rapid response from Dr. Medbery.  He stated about what I expected but coming from a licensed physician that deals with AN patients, his words are a lot more compelling and should definitely give you something to think about in the weeks to come as you research options. 

Jim
Title: Re: Radio is not for young people???
Post by: Melissa778 on August 14, 2009, 10:47:07 am
Novagirl,

I recently chose to have translab to remove my AN.  Radio was an option my doc went over with me, but because of location and other factors I chose surgery, and then ended up needing a bit of Gamma Knife anyway.  The decision between surgery and radio is very personal and not always easy.

I am 31 and had Gamma Knife last fall and I feel terrific.  I won't lie, surgery for me even at a young age and being overall fairly heathly was rough.  My gamma knife was a breeze.  I did worry abotu some of the "myths" that are currretly out there about radio and age being a factor, but I'm living for the now.  And if radio now deals me issues later in life, I'll deal with that later in life. :)  One problem at a time :)

Surgery was also very rough on my children.  My son was 5 and my daughter 2 at the time of my surgery, i was 2 hours from home for 6 days.  Seeing mom laid up like that was rough on them.  We went over alot with them prior to and they were a great help after.  But they did go through rough spots themselves.  And recovery varies for everyone, btu it did take me awhile to get back to normal activities.  And some days I'm still not "normal".  Although I find most people aren't anyways :)

Feel free to PM if you care to chat or have any questions.

Melissa
Title: Re: Radio is not for young people???
Post by: novagirl on August 14, 2009, 01:26:26 pm
Thank you for your posts, everyone.
Jim - yes, I was very glad to hear from Dr. Medbery and you are absolutely right, getting an opinion from a licensed physician who treats AN patients for a living definitely carries a lot of weight for me!

Melissa - thank you SO much for your message!!!! Actually, after I read it, I realized something: my ENT (who was so strongly opposed to radiosurgery) did say that if he "doesn't get it all, radiation could be used to treat whatever is left of the tumor." Hmmmmm. Guess that means radio isn't as bad as he painted.... Anyway, I realize there are no guarantees with ANY treatment and there are risks associated with surgery and radiosurgery (and W&W!). So we just have to look at our individual circumstances and figure out what is best for us, as you said, in the "now." And then if necessary just deal with whatever comes our way down the road.

I also really appreciate what you shared about children. I am sorry they had a rough time. I am glad to hear you are doing well now, I am sure that makes them very happy.  One thing that I have really come to realize more than ever before is that my child and her well-being is my top priority, bar none. She needs a healthy and happy mother, and that is my goal.

This forum is absolutely amazing! Thank you everyone, God bless!
Title: Re: Radio is not for young people???
Post by: Tumbleweed on August 14, 2009, 10:55:41 pm
Novagirl, I'll add a couple more things:

1. Marianna raises a very good point about followup MRIs. Until you've had at least one followup, you don't even know if the tumor is growing. Dr. Brackmann told me he has observed some ANs that didn't grow at all over the course of 20 years! As your tumor is small, "watch and wait" is another viable option for you.

2. When you consult with doctors who do radiation treatments, ask them how long they've been practicing that form of treatment (whether CK, GK, or standard FSR) and then ask them if they've ever seen malignancy arise after treatment (in the irradiated area). I doubt any ever have. Dr. Chang told me a year ago when I was treated that he had not seen a single case of malignancy in post-CK patients, and he had treated over 700 for, if I'm not mistaken, over a decade. Now a decade isn't very long. But GK (which is very similar to CK) has been around for around 40 years now, and I don't think there are any firmly documented cases of malignancy as a result of treatment. I believe I once read about one case -- out of many thousands -- but it arose years ago when doses were much higher and the possibility of coincidence could not be ruled out. Research shows that the chances of malignancy developing are the same as the risk to the general population of developing cancer.

For me, I had to ask myself what was I more worried about: immediate damage from surgery or theoretical damage from radiation decades later in life. I'm obviously over-simplifying my decision-making process here, of course (radiation also obviously causes damage, or it wouldn't kill the tumor) these decisions are not that simple and there's a lot to consider. But hopefully I've given you yet another perspective to consider in making your very personal decision.

Best wishes,
Tumbleweed
Title: Re: Radio is not for young people???
Post by: eab on August 16, 2009, 09:07:18 pm
Welcome to the club... sorry about the AN, but as you've already said, you've found a great resource in the website. I continue to be amazed at how polarizing this topic is... there is definitely a surgery vs. GK vs. CK among patients and doctors alike.  So while I would love to be a moderate voice, the truth is, I am pro-radio. 

I am 38 and had GK on July 6.  My AN was about 2cm at it's largest.  In considering my options my decision had a lot to do with being the mom of 3 young kids (a 4 year old and 2 year old twins). Also, I have good hearing that I wanted to hang onto, but more than that I'm vain enough to be seriously concerned about my facial nerve.  I have the slightest loss of feeling in my left cheek and didn't want to find out what the rest of my hopefully long life would be like without that nerve.  I am 6 weeks out and feel completely normal, maybe a little tired, but it's hard to tell what the source of that is with 3 kids and summertime heat.  I know that I have a long way to go before I am out of the woods but for today I can keep up with my kids and know with measured confidence that the AN is not going to continue to be an issue in my life.

If you are interested in a really detailed CK story, check out: http://www.myacoustic.org/
He had a tough couple years recovering which seems fairly uncommon, but compared to many of the surgery recoveries I've read about on this site, it could be much worse. (Yes, I know there are people who had surgery who recovered quickly too.)
Best of luck in making this tricky decision.
Feel free to PM me if you want more GK details or have any questions.
Beth
Title: Re: Radio is not for young people???
Post by: MaryBKAriz on August 16, 2009, 10:43:34 pm
Hi Novagirl,

I just want to say although I am 60, I do know your AN is small like mine. Small ANs are very often candidates for radiosurgery. As people mention it is a personal decision and all I can recommend is do as much homework on the subject with qualified and EXPERIENCED AN dr's. I consulted many and ended up with a doctor who gave me all options, watch and wait, 2 types of surgery or 2 types of radiosurgery. He gave me lots of information, answered a lot of questions but didn't push me into anything. I am very gald I went CK although I have balance issues (I had it before also and have other health problems contributing to that issue). My husband too me out to eat after the treatment! It has  been more than 14 months now and my life is good!

Hang in there and feel free to PM me if you want to talk.

Mary
 :)

Title: Re: Radio is not for young people???
Post by: sgerrard on August 17, 2009, 05:56:42 pm
One of the sessions at the symposium last weekend was a panel discussion, with various cases presented to 5 physicians by the moderator Dr. Weit. In some cases they all agreed, but it is important to note that even with 5 distinguished and experienced panelists, in some cases they certainly did not agree. In particular, there were cases where some said "definitely surgery" and others said "definitely radiation."

That is just the way it is, and I don't know if the day will come when the entire medical community agrees about when to treat acoustic neuromas with which treatment. If you are considering radiation, you need to find a physician who routinely suggests radiation treatment as an alternative when it is appropriate. Then you can tell whether your case is a good one for radiation treatment.

You might also take a look at Francesco's story, he had CK at age 34 and is two years post CK now: http://anausa.org/forum/index.php?topic=9777.0. He has a web site detailing the entire experience.

Oh yes, and welcome to the forum. :)

Steve
Title: Re: Radio is not for young people???
Post by: novagirl on August 18, 2009, 07:04:36 am
Thank you, everyone, for your support and comments. You guys are amazing!
I'll meet with the CK team tomorrow and hopefully I am a good candidate for radio.... Dr. Medbery seems to think so, but will see what tomorrow will bring. I'll definitely post to let you know.
Steve - yes, I definitely agree with you: the fact that doctors tend to disagree so much on the treatment of an AN can be frustrating. I guess we all wish there was a magic pill that we could take and be done with it! :).
Title: Re: Radio is not for young people???
Post by: Tumbleweed on August 18, 2009, 08:49:14 pm
I've been thinking about Steve's last post on this topic. What's interesting is I remember reading a survey of doctors awhile ago that infers their opinions don't differ so much when it's their brain at risk. In the survey, doctors were asked what form of treatment they would choose if they had to seek treatment for an AN. The overwhelming majority said they'd choose radiation. Age didn't make a difference -- young and old doctors alike chose radiation.

Best wishes,
TW

Title: Re: Radio is not for young people???
Post by: DR on August 19, 2009, 09:59:03 am
Welcome to another newbie.  Please let us know how your meeting goes today.
Title: Re: Radio is not for young people???
Post by: novagirl on August 19, 2009, 02:02:26 pm
Well, here is an update. I met with the CK team at Georgetown: a neurosurgeon and a radiation ongologist. They basically said I could choose any of the three options available: w&w, surgery or radiosurgery. I asked the neuro point blank what he'd do if he were me, he said he'd have surgery because he's had surgeries before and he'd want the thing out of his head (I didn't press him whether he's had BRAIN surgery before!). The radiation guy stepped out of the office when I asked that question so he didn't weigh in. But the neuro sais as a rule, the tendency is to recommend surgery for younger people because the recovery (as a rule) would be easier.

They laid out all the risks and possible side-effects and basically left it up to me to make a decision. Both agreed that radio surgery has very good tumor control rates. Also, possible side-effects of surgery are definitely more serious.  Hearing preservation is better with radio. The only concern about radio that the neuro raised was that they cannot tell me for certain that the irriadiated AN will not start growing 20-30 years from now (even though GK has been around for decades, it apparently from what I understood, wasn't used specifically for treatment of ANs). At Georgetown they haven't seen any patients who needed surgery after CK. They also said if I am not ready to make a decision right away to just go back and have an MRI done in October-November (my last one was in July). So that was pretty much it. They didn't tell me anything I didn't know going into the meeting. Nor did they try to steer me towards a particular treatment. So it's all up to me!

This about sums it up.
Title: Re: Radio is not for young people???
Post by: ppearl214 on August 19, 2009, 02:05:24 pm
actually, the appt sounds pretty decent. I, personally, would challenge one or 2 of the comments but overall, the info that was shared sounds reasonable.  They are definately right... you are in line for all 3 options... and that it is solely up to you and your personal situation.  Maybe do another MRI in 6 mos and see just how active (or not) the AN is and take the time to continue your research?

Just my 2 cents... but heck, in today's economy, worth less than that! :)

Hang in there.....
Phyl
Title: Re: Radio is not for young people???
Post by: novagirl on August 19, 2009, 02:12:12 pm
Thank you Phyl - and it's very nice to virtually meet you. Congratulations on the award.
Just curious - which comments would you challenge?
Personally, I must say I am leaning more and more towards CK, so couldn't understand WHY the neuro thought surgery was a better option when clearly there are known side-effects, and he said hearing preservation is 50/50 (my hearing is 100% on the AN side right now)
Title: Re: Radio is not for young people???
Post by: Jim Scott on August 19, 2009, 02:22:59 pm
Novagirl ~

I'll concur with  my fellow moderator, the award-winning Phyl, that the Georgetown doctors seem to have been honest with you and weren't acting as partisans for any one treatment approach.  I also agree that waiting until the fall to have another MRI scan and see if the AN has grown would be a logical approach.  In the meantime, seriously consider a treatment option, should the MRI present bad news (growth).  We always state that AN treatment is a very personal decision and no one here will try to tell you (or anyone) what to do.  It's clear that both AN surgery and radiation each have pluses and minuses.  There is no totally 'right' or 'wrong' choice, only your choice, based on your research and 'gut' feelings (intuition) about what you believe is right for you.   Other people's experiences, while beneficial as research, cannot guarantee your outcome, no matter which approach you choose.  That being the case, we stand ready to offer whatever we can to help you make a decision, should one be necessary.

Jim
Title: Re: Radio is not for young people???
Post by: ppearl214 on August 19, 2009, 02:28:43 pm
*smiles*

thank you for the congrats and "virtually" nice to meet you as well :)

Only my 2 cents and others here may note differently, which I totally respect (unless they disagree with me ;)  jk) :)


Dr noted to you about being younger and ability to recuperate from surgery quicker. Now, we know that is commonly true with any ailment or surgery... but, with radio... honestly, there is no recuperation.  I took the week off from work for my radio treatment... each of my treatment days (5), I had my CK, went to lunch, got online with here and my work emails (I'm set up to work from home)..... walked my dog, etc etc etc.  I reported back to work the following week.  So, I respect what the doc noted about surgical treatment and younger folks recuperating faster.... with radio, there is no recupe period.

dr is commenting about not being sure if an irratiated AN would grow back in 20-30 years... well, heck... I don't know where I'll be in 20-30 yrs (could be 6' below, ya know?)  I could be hit by lightening or the oldest woman living that becomes pregnant (ok, don't go wishing that one on me!).  Bottom line.... life is filled with risks.  Surgical risks... radio risks... 20-30 yrs from now... I can't think that far forward, so, for me... you do what is best for you and your situation (overall.. ie: financial, facility location, experience of the team, your day to day living situation, your employment, etc).

Only from my own experience... like you, I had high level of serviceable hearing (over 90% at time of treatment).... 3.5 yrs later, I still have over 90% serviceable hearing.  I know of those that lost more hearing after treatment (both, surgical and radio) and some that remained the same. To me, its a Craps Game as "individual results may vary".

There are 2, to date, that I personally know, that had failed CK and went into surgery (they both participated here on these forums).  Success rates for radio, overall, is very high, so for anyone to see an AN radio failure is VERY rare.

Heck, I've been married 2 times now.. that is risk enough for me! :)

so, enough from me... welcome again to the site... disregard the man behind the curtain... but most of all... glad you found us! :)

Phyl

Title: Re: Radio is not for young people???
Post by: ppearl214 on August 19, 2009, 02:45:59 pm
sidenote: BTW, there was a girl at the symposium this past weekend that she and her mom have been on these forums for a while. Taylor and TaylorsMom.... Taylor has been through utter heck with her AN journey (you can do a search on "Taylor" on the home page at the top/Search option). Taylor is now 21 and everyone that met her will tell you what a spitfire she is... now she has a small AN regrowth and had CK performed  last week.  So, in keeping with this topics title:  Radio is not for young people?.......young is just fine. Phyl
Title: Re: Radio is not for young people???
Post by: novagirl on August 19, 2009, 05:12:18 pm
Jim/Phyl - thank you so much for writing back so quickly! And Phyl - the sidenote was really helpful, I really appreciate it! I am really greatful ANs are treatable and am greatful to have options! So will probably wait till the next MRI and at that point make a decision. Right now, it looks like CK would be the best course of action for me (just given my individual circumstances and based on what I learned so far). Clearly, there are no guarantees with any treatment, but I think I'd like to minimize side-effects and try to preserve hearing. Quality of life after treatment is also important to me (a busy working mom talking). I also agree that we just have to take it one day at a time and not obsess with what MIGHT possibly happen down the road. Lots of things might happen (lots of things totally UNrelated to AN!) We can just pray that whatever comes our way will be only good!

Good wishes to everyone. I absolutely love this forum!
Title: Re: Radio is not for young people???
Post by: ppearl214 on August 19, 2009, 06:30:47 pm
we kinda like it around here as well. :) Keep us updated on how you are doing.... as you can see... we're all here to help :)  Hang tough!

Phyl
Title: Re: Radio is not for young people???
Post by: Tumbleweed on August 20, 2009, 01:15:38 am
Chiming in on a couple other notes...

Surgeries can "fail," too. There are (rare) cases of surgeries for AN removal where a piece of the tumor was missed by the surgeon, or left in intentionally because it was involved too much with a nerve to remove without endangering the nerve's function, or it just simply grew back years later for no explainable reason. The recurrence rates for ANs are roughly the same for surgery and radio.

Radiosurgery treatments are very well tolerated by most patients. That said, some people react strongly. I'm one of those. I suffered profound fatigue for about a month after getting CK and was pretty wiped out through the second month post-treatment. But my reaction was highly unusual. It may have been due to my tumor reacting very strongly to the treatment (a plus), because I initially had swelling followed by very dramatic shrinkage. In any case, I would do it all over again in a heartbeat if I had to. CK has been a miracle treatment for me. I only mention my initial trouble post-treatment so that Novagirl knows the risks, however small, of having a strong reaction to the treatment. Bottom line: I feel better now (13 months after getting CK) than I did immediately before getting treatment, so the rough ride was totally worth getting to the treasure at the end of the rainbow.

FWIW, my personal path was watch-and-wait for 6 months after diagnosis to see if the tumor was growing or not. When it was determined it was growing (and growing quickly), I already had chosen CK as my fall-back plan and immediately scheduled treatment for several weeks later (when it was most convenient for me to have it).

Novagirl, I think your doctors went about your consultation in a very balanced way. Most doctors will do as yours did and tell you all your options and then respect that it's your decision to make. And your neuro gave his opinion when you asked for it. I'd say it was a good appointment.

As for the whole 20-to-30-years-from-now-uncertainty thing... if it were me (and it was 13 months ago!), I'd choose the treatment that is most likely to succeed and that's the least likely to do damage in the short-term. There are new treatments being developed in the field of medicine all the time, and a superior form of treatment may be available for treating ANs 20-30 years from now. (I recently posted news about high-intensity ultrasound that shows some initial promise for treating brain tumors non-invasively sometime in the future.) The research I've read indicates CK and GK have equal to the best results coupled with the lowest number and severity of side effects (nerve damage). Especially for young people in their prime, I would think a primary goal should make the next 20 years -- their prime years -- the best in their life, not sacrifice their prime years because of some fears over what might happen 20 or 30 years down the road.

Just my opinion, of course. And perhaps I've overstepped my bounds (if so, I apologize). But this forum is all about sharing opinions and knowledge (and support for one another). Take my opinions with as much salt as you care to.

Best wishes,
TW

Title: Re: Radio is not for young people???
Post by: Vivian B. on August 20, 2009, 05:27:19 am
Hi TW,

Well said. I just wanted to ask you where you posted the news about new treatment ultrasound. I would appreciate it.

Vivian
Title: Re: Radio is not for young people???
Post by: novagirl on August 20, 2009, 01:17:06 pm
TW - just wanted to thank you for chiming in. Everything you said makes ALOT of sense to me and is totally reasonable. I agree and am glad that other people reason along the same lines as I do :). Your story is very encouraging, and your thoughts/comments are always sincerely appreciated.

Best wishes
Title: Re: Radio is not for young people???
Post by: Tumbleweed on August 21, 2009, 01:37:16 am
Hi TW.... I just wanted to ask you where you posted the news about new treatment ultrasound.

http://anausa.org/forum/index.php?topic=10175.0

Best wishes to all,
Tumbleweed
Title: Re: Radio is not for young people???
Post by: Tisha on August 21, 2009, 06:31:24 am
Hello,

I would also like to add that in many cases, CK can be performed again if the tumor would start growing down the road.

Tisha
Title: Re: Radio is not for young people???
Post by: Vivian B. on August 21, 2009, 07:01:00 am
Hi Tisha,

Do you know if GK be performed again if the AN regrew?

Vivian
Title: Re: Radio is not for young people???
Post by: goinbatty on August 21, 2009, 07:53:35 am
Hi there,
Sorry to hear about your AN.  There are several of us on here who were treated at Georgetown.  If you do a search for Georgetown, hits will come up.  My only advice would be to consult with mulitple physicians and read, read, read before deciding.  I was treated with CK a year following diagnosis when the repeat MRI showed that the tumor had grown faster than the norm.  Just remember that the specialist you see tends to recommend treatment in their field.  When I went to Georgetown for consults, I was required to see a neurosurgeon even though I had already made up my mind for CK.  And as expected, he recommended surgery.  I then saw the radiation oncologist.  I'm from SC so several months later I returned for treatment.  I'm very pleased so far.  Very few side effects which were mild.  My AN hearing decreased slightly but still remained within the low end of normal.  I do think it's decreased some since my last exam in 1/09.  Will probably have follow-up exams in January. 
Sandra
Title: Re: Radio is not for young people???
Post by: Tisha on August 21, 2009, 08:18:57 am
Hi Vivian,

I really don't know the answer to your question about GK.  I would think the only reason it would not be able to be performed is because of the "one hit" strong use of radiation vs. the "painted" fractioned CK....but I don't know, sorry.

Tisha
Title: Re: Radio is not for young people???
Post by: sgerrard on August 21, 2009, 08:55:07 am

Do you know if GK can be performed again if the AN regrew?


Dr. Kondziolka (the GK guru from U. of Pittsburgh) was at the symposium, and he said yes. They have only done 5 or 6 cases, with good results so far. It is done on a case by case basis, and you would probably have more chance of weirdness and hearing loss. Happily it doesn't come up too often, but that also means this is one area of radiation treatment where there really isn't a lot of data.

Steve
Title: Re: Radio is not for young people???
Post by: ppearl214 on August 21, 2009, 09:42:52 am
Steve, correct me if I am wrong.... he also noted that typically, this is very rare as the success rates for many radio treatments is so high that re-do of radio treatment is usually not necessary......  did I mis-hear him?  Or was that Dr. Blevins that said that?


Phyl
Title: Re: Radio is not for young people???
Post by: novagirl on August 21, 2009, 11:55:39 am
Sandra - thank you so much for your post. Dr. Gagnon (who treated you) and Dr. Jean were the ones I met with. They were at the meeting at the same time. I am glad to hear your CK treatment at GT went well. I was really impressed with Dr. Gagnon myself. He definitely didn't try to steer me towards any decision and provided very good explanations in "farmers' language." I felt very comfortable talking to him. I am very close to Georgetown (I live only about 10 miles outside of DC) so am very happy they have CK there! Glad to hear from someone who was treated there! And I hope your AN dies in peace and gives you no more trouble :).
Title: Re: Radio is not for young people???
Post by: sgerrard on August 21, 2009, 07:40:14 pm
Steve, correct me if I am wrong.... he also noted that typically, this is very rare

Dr. Kondziolka is more of a numbers guy than an adverb guy. :)

He put the number at 98% control of growth, so 2 out of 100 radiation patients would have to grapple with the question of a what to do for a second treatment.

Steve
Title: Re: Radio is not for young people???
Post by: Tumbleweed on August 23, 2009, 09:52:00 pm
If I remember correctly, Dr. Chang told me the same success rate (98%) applies to AN tumor control for CK performed at Stanford.

Best wishes,
TW
Title: Re: Radio is not for young people???
Post by: RamAir on August 24, 2009, 01:03:37 pm
Novagirl...take a deep breath.  You're going to be fine ;D

An AN diagnosis is not the end...but the beginning. Rather than go into long detail...check out my posting about my radiosurgery experience 10 years ago.

http://anausa.org/forum/index.php?topic=186.0


If you'd like to talk...I'm listening. ;D
Title: Re: Radio is not for young people???
Post by: novagirl on August 24, 2009, 02:29:46 pm
RamAir - thank you! Your experience is truly inspirational!
Title: Re: Radio is not for young people???
Post by: smallbutmighty on November 05, 2009, 06:48:33 pm
Hey Nova Girl!
Sorry to hear you have one of these things too! I am 34 and have a small 1c AN...got GK a month and a half ago! I have video of the whole thing and post op too to share with anyone who'd like to see. My fiance is a camera man and he used iphone sneakily...but wanted to comment..DONT listen to what one specialist has to say about what another does. Instead go directly to that specialist and ask him/her! I got the same speach about age/kids etc from a surgeon. I point blankly asked him statistically about down sides of radiation verses surgery and he said that I am more likely die in a car accident than have side effects from radiation and that I would have side effects like facial paralysis etc from surgery. Not to mention recouperation time. Had GK and am so happy! Would do it again and again over surgery!
Title: Re: Radio is not for young people???
Post by: davjack on November 07, 2009, 10:22:32 am
Hello and welcome Novagirl!  Thanks for joining us (although I wish you didn't have a reason to do so - an acoustic neuroma diagnosis).  

I'm pleased to learn that this website/forums have been helpful to you.  Unfortunately, many neurosurgeons and ENT's still cling to the concept that irradiation treatment for for an acoustic neuroma is not recommended if you're much under 50 - or 60 or even 70, depending on the doctor.  Although this may have made sense at some point, it has been shown to be inaccurate.  I'll let others offer the details as to why.  So, your doctors reaction to radiation was drearily predictable.  However, as you've already seen, not every neurosurgeon or ENT holds this outmoded view.  Definitely check out CyberKnife treatment.  

Jim

You just made my day ;D I'm pretty sure I'm coming to my decision.
DJ
Title: Re: Radio is not for young people???
Post by: Nickittynic on November 07, 2009, 11:55:32 am
Hello from you neighbor in Baltimore! I don't have much useful to say except Hello and Welcome! If you ever want to hear about my experience at Johns Hopkins (I had surgery there but my grandfather had GK for meningioma there, though it was YEARS ago..), feel free to PM me.
For me, I was told radiotherapy was not an option.. or not a good one, I guess.. because of a combination of my age (23 at the time) and size of my tumor (almost/about 5cm). They said it would require so much radiation that it could fry other good parts of my brain ??? I didn't ask anymore questions about it but perhaps I should have.
Title: Re: Radio is not for young people???
Post by: sgerrard on November 07, 2009, 12:09:41 pm
I was told radiotherapy was not an option.. or not a good one, I guess.. because of a combination of my age (23 at the time) and size of my tumor (almost/about 5cm).

Age should not really be a factor, but tumor size certainly should, and a 5 cm AN is indeed too big for radiation. It is too close to the brainstem at that point.

Steve
Title: Re: Radio is not for young people???
Post by: novagirl on November 09, 2009, 08:49:06 am
Nickittynic:

Hello and thank you for sharing your experience. I've heard a lot of good things about Dr. Tamargo at Hopkins so I am sure you got the best care possible. I'll have my MRI this Wed to see if there is any tumor progression since July. And if there is growth, I'm pretty sure I'll go with CK at Georgetown. In July my AN was 1.2 cm and my hearing is intact, I also haven't had much dizziness, so if I CK stops the growth, I can definitely live with my very minor symptoms. My AN was pretty close to the brainstem, but the radio-oncologist (Dr. Gangon) I spoke with said I was fine for CK, so will see. Hopefully, the thing has not grown much.  Although I've seen a lot of posts about ANs growing dramatically between MRIs.

Thank you for writing and perhaps we'll get to meet at one of the support group meetings.
Best wishes to you.
Title: Re: Radio is not for young people???
Post by: Nickittynic on November 09, 2009, 02:02:17 pm
Sounds good! If I had it to do over again, and radio had been an option, I think I probably would have chosen it, too!
Good luck and happy MRI thoughts!
Title: Re: Radio is not for young people???
Post by: tatianne on November 11, 2009, 02:30:23 pm
Im 33 and I had GK in May  2009....My neurosurgeon and neurotologist both agreed on this treatment for me.

The felt the risks of surgery where far more great then the risk of having GK at a younger age.
 
Title: Re: Radio is not for young people???
Post by: novagirl on November 11, 2009, 04:52:28 pm
Tatienne - thank you for your message. I had my MRI done this morning, so like you, am waiting to find out the results. The technician said they will fax the written report to me as soon as they fax it to my doctor, so could be tomorrow that I'll get to read it. But my consult is not until Wed, the 18th.
I am glad you are posting on your progress. GK/CK results are very reassuring.