If you had to do it over again ....

[Nancy Drew]

Considering gamma knife.  After having radiosurgery do any of you ever doubt that maybe you should have done the surgery instead?  Or even had CK instead of GK or GK instead of CK?  Or that you should have done the wait and watch a little longer?  I guess what is done is done.  I am always one of those who constantly doubts myself, and I get hung up on the "what ifs".  Making a really big decision just about drives me crazy.  However, I didn't have to think twice about marrying my sweet husband of 26 years!  Would love to hear what any of you might have to say regarding this subject.  I know no one can make my treatment decision for me which is a bummer!!!  Thanks.  Nancy

[CaryF]

Hi Nancy,

I just sent you a PM but I thought I would be the first to answer you question. If I had it to do over again I would still pick GK. After all my reading, research and the folks I actually got to sit down and talk to, I feel I made the best decision I could. I felt that the least evasive approach was my best 1st line of attack. If for one reason or another I have to revisit this problem then I will do whats needed to kill this little bugger. Even if it means looking into surgery. Everyone is different, with different goals, mine is to keep active & hold on to what hearing I have left. I chose GK over CK because I liked the one session approach, long track record and the fight with my insurance co. about going out of network for CK was going no where.

Cary...

[Kaybo]

Nancy~
I have to be honest and say that after getting to know people better on here and their different treatment choices, I would really consider one of the NON-surgical routes.  I totally understand wanting it GONE and that size is definitely a factor, but after all the "effects" I have had, for quite a long while now, I think I would look into other things.  Of course, they were not even available when I had my surgery and I am just glad that I am alive & kicking today!!   

K

[OMG16]

We were never given the oppurtunity for any sort of radiation and I wish we had been.  We were only told surgery was the way to go for our 16 year old son and it did take us a 1.5 years to decide to do that.  I know as a Mother I would have gone the CK route without the worry of brain surgery and the effects it can have when something goes wrong.  Which thankfully is very rare indeed.  So continue your research and peace will come when you make your decision.  Kisses to your forehead  16

[Nancy Drew]

I have always heard that the longer you can wait it out the more time they have to come up with something new and hopefully better.  Sorry to hear that other less invasive treatments weren't available or that doctors wouldn't give out info about other options.  Sometimes I think doctors tend to go with what they know.  Sounds like you are a good mom 16, and I will try to get my husband to kiss my forehead more often.  Glad to hear that you are still kicking K.  Keep on keeping on.  Nancy

[OMG16]

Nancy you are so right about new treatments.  Just last week I watched a show put on by our local news regarding brain tumor and cancer break throughs.  They show something in clinical trials now where they use scorpion venom and a dye that is only uptaken by the abnormal cells in the brain and it is very exciting to say the least.  We are lucky in the Seattle area we have alot of biomedical research facilities and hopefully can benefit in the future from this.  I will try to find the link and attach it for you.  I may need Steve's help as I just learned how to send a link with my email last week.  I am indeed very proud of myself.  Shhh don't tell my son as he has known how to do all this since he was in 1st grade and got his first computer.

Forehead kisses always make everything better......don't they?      16

[Nancy Drew]

Scorpion venom?  Well, they injected this stuff in my knee for tendonitis, and it's made from the comb of a rooster.  It worked.  I read that smoking cigarettes keeps one from getting canker sores in the mounth and tanning beds help with depression.  Those two I think you can rule out!!!  Speaking of depression, do a lot of people get depression in Seattle because of the rainy weather?  I have problems with depression, but it helps living in Denver with the over 300 days a year of sunshine.  Sorry I've gotten off subject folks.  But, I will say that no amount of sun is keeping my depression at bay right now since I found out the AN is growing.  But, being here on this forum helps.  Thanks.  Nancy

[OMG16]

Nancy I just sent you the link for the tumor painting research.  Yes it is so depressing not having sunshine and we would love to move to Palm Springs now intead of in 10-12 years.

Don't get depressed that just adds to the stress of an already stressful life changing event like you are going through.  Just try to remember that it is a benign tumor that is slow growing and that you can manage through the symptoms that it causes.  Do like my son says (he is wise beyond his years) and wake up and think of one thing that you are thankful for and start by smiling and laughing to start the day off. He has helped me with the illness that I am going through and excepting and forgiving what has happened to him.  He still has the brain tumor that may be causing blindness slowly, had a massive stroke and has left sided paralysis due to this and is the most positive upbeat person I know.  If he can get through all of that then we can to!  If you need help with this please PM me and I would be happy to be your one on one support.  Hang in there and know that we on this forum do care and want to help you through this.  I think you need millions of forehead kisses.  16

[Nancy Drew]

16, It sounds like both you and your son are an inspiration to each other and to everyone else.  I always hear you have to deal with the hand that you're dealt which is not always easy to do.  I do try to find the positives in each day.  Some days I do better than others.  I have bipolar disorder that sometimes gets in the way, but I manage it fairly well.  You are right about the tumor being benign.  That is the positive side of it all I guess.  I volunteer on the oncology unit at The Children's Hospital, and I think it was meant for me to volunteer there (just started three months ago) because it helps me appreciate the fact that my tumor is benign and not life threatening.  Those kids are so brave.  It usually whips me back into shape mentally when I go there.  Maybe I should volunteer more days each week.  Thanks for the encouragement, and it is nice to get a little mental "tune up" from time to time when I need it.  Take care.  Nancy

[OMG16]

The peidatric onc unit can give you a love of life that you did not know you had.  I applaud you for your volunteering in this unit not everyone is strong enough to do this.  I think you have more internal strength than you are aware of, and you are treating bipolar to boot.  You are an inspiration yourself and you should be very proud of how you are handling all of this.  3 cheers for Nancy.  16

[goinbatty]

Making that final decision is extremely tough.  If I had to do it over, I would still chose CK.  My first reaction after being diagnosed was surgery.  I was in watch and wait until it was obvious it was growing more rapidly than expected.  Guess I could have waited longer but my thought process was zap it while it's small and hopefully the side effects will be less.  So far so good.  It's such an individual decision.  It is true that there is something to be said about development of new treatments. This is my favorite website I use to research clinical trials.  Although acoustic neuromas aren't listed right now, it may be at some point. 
http://www.centerwatch.com/patient/studies/area14.html
http://www.centerwatch.com/patient/studies/area10.html
http://www.centerwatch.com/professional/pro1756.html

[er]

hello Nancy drew,

Like Omg 16, I was not given that choice. I was told I had to do the surgery. Watch and wait would kill me because it was growing and it was put a lot of pressure on my brain and radiation was out of the question. I really don't remember why?
eve

[MaryBKAriz]

Good Morning,

Since I just had CK one week ago, this isn't a long term answer, but I feel in my heart that my answer won't change. I am glad I went CK. It is FDA approved, been around 10 years, so has a decent track record, for sure. I had all 4 options, watch & wait, (not an option I liked because of quickly worsening symptoms), three types of microsurgery, most likely middle fossa or translab, then the 2 radiosurgeries, GK and CK.

I am 59 so I am not ancient but not a spring chicken. At my age, surgery seemed extreme for a smaller AN. I thought, would I rather have my brainbooger, "Goldie", dead and in me or dead and out of me. I didn't care, dead is dead. I have seen reports of tumors that grew back either way, so the "cure" seemed the same to me. Big AN centers, with Dr.s who treat hundreds of people from all over the world can do the surgery to remove re-grown tumors, either way. My Radiosurgeon said CK can be done, again. CK has no screws in the head. I only had one treatment, since my hearing was gone. Originally, I was doing the 3 day CK to save my hearing because it has a better track record of doing that. Unfortunately, for me that quickly became a non-issue. 

When it all comes down to it. These were MY decisions made for ME. I took a look at my life, my age, taking care of elderly mom, frequent RVing, time with "retired" hubby, etc., etc. Then I looked at the confidence I had in my doctors. I looked at the way they gave me all the pluses and minuses. They even sent me to this forum! They wanted me to know and be educated in my decision.

Good luck with your decision. No matter what you decide, we will be here supporting you. What is good for one person, may not be good for the next. Once I knew which way I was going, I felt comfortable with my decision and haven't second-guessed it.

Take care,

Mary

[shygirl]

if I had it to do over again, I would definitely have found this forum first thing!!!! I was also told I had no choice but surgery. The neurosurgeon told me the tumor was too large for radiation. Too large? 1.8 cm is not too large!!! I know this now. My hearing was also perfect and the ENT strongly suggested translab. I think I'm just too trusting in Drs that I didn't second guess.

I would have gone with CK. But, what's done is done and I still have a good quality of life. I'll never be the happy-go-lucky person I was, but I'm still fun!!

Shye

[Nancy Drew]

Mary,  Thanks for your input, and I am glad you were able to feel good about your choice to have CK.  I flip flop between CK and GK, but I am leaning more toward the GK at this point since the CK here is new, and I don't think they concentrate as much on treating ANs.  The GK center here is run by some of the best AN docs in Denver area.  They are open to GK and surgery, and they do both procedures.  Cary on this site also lives in Denver, and he researched his options very well.  His AN was slightly bigger than mine, and he was able to maintain his hearing with GK.  His doctor and my doctor consult with each other, and I might go with his doctor only because I hear he has more experience.  But, I still go between W & W and GK.  Still waitiing for the panel of doctors opinion this week before I get caught up too much in having to decide.

As for you Shye, I am so sorry your doctor didn't tell you about more options available to you.  I think sometimes doctors go with what they know best, and it is a shame they don't think outside the box sometimes.  However, doctors are human, and I guess you have to take that into consideration when you make a decision about anything.  I had to make a decision about a surgery many years ago, and I got opinions from many doctors in town.  They all went against my doctor, but in the end I went with what my doctor suggested, and he was right on the money.  So, you never know.  Best of luck to you as you continue your journey.  Thanks everyone for your support and wisdom.  Nancy