My 22 year old son was newly diagnosed

[mcrue]

One thing that I would like to add to this discussion is that there are multiple studies that show positive attitude directly, positively impacts surgical outcomes as well as outcomes to many medical treatments, including cancer treatments.  I see it all the time with patients.  I can almost tell you before treatment which patients will not improve, based on their outlook.

Respectfully, we can agree to disagree.

If that concept was true, then people could simply treat their cancer or illness with "positive thinking." I've read too many "horror" stories of scenarios featuring some of the most positive thinking people around who suffered devastating post-op outcomes. It would make me ask "why do bad things happen to such good people."

I think the whole concept of positive thinking regarding outcomes is up for debate with respect to any scientific facts/evidence:  http://www.cancer.org/treatment/treatmentsandsideeffects/emotionalsideeffects/attitudes-and-cancer

This is just my humble opinion and is not meant to offend anyone. I submit it in good faith

[S. Robin]

Thank you Bamastory,

You have been very helpful. Kindness and encouragement go a long way. We are all weighing the options and will each follow the road that our research dictates is best. I have studied and studied the options, receiving your encouragement and validation was just what I needed at just the right moment. Thank you so very much!

[Kathleen_Mc]

Jon proposed to his girlfriend a few days ago. They are excited to make plans to start a life together. If we wait, which no Dr. has advised, and he graduates from college, gets a full-time job, gets married and starts a family, his life will be so much more complicated if he needs to have it out then because it has grown and started to cause more problems.

S.Robin......One thing for him to seriously consider is having this tumor dealt with before having children. I say this as had I been told BEFORE I got pregnant with my first child that I had regrowth of the tumor that had been removed some 7 years earlier I would have certainly put off starting a family until after I had the regrowth removed.......then have my family AFTER I saw how I felt afterwards. Absolutely anything COULD go wrong when he has surgery, there are some rare cases of horrible outcomes and if he was so unfortunate he might not be able to work anymore, or be the father he wants to be.
Just my two cents
Kathleen

[mcrue]

Thank you Bamastory,

You have been very helpful. Kindness and encouragement go a long way. We are all weighing the options and will each follow the road that our research dictates is best. I have studied and studied the options, receiving your encouragement and validation was just what I needed at just the right moment. Thank you so very much!

S.Robin......One thing for him to seriously consider is having this tumor dealt with before having children. I say this as had I been told BEFORE I got pregnant with my first child that I had regrowth of the tumor that had been removed some 7 years earlier I would have certainly put off starting a family until after I had the regrowth removed.......then have my family AFTER I saw how I felt afterwards. Absolutely anything COULD go wrong when he has surgery, there are some rare cases of horrible outcomes and if he was so unfortunate he might not be able to work anymore, or be the father he wants to be.
Just my two cents
Kathleen

Thank you Kathleen. You have been very helpful. Sometimes the kindest thing you can do for someone is tell them the truth and not sugar coat things. Thank you so very much! I'm sorry your tumor had regrown 7 years after they removed it all with microsurgery. Thank you for sharing your two cents. I agree with you that major brain surgery should never be minimized.

[mcrue]

I have carefully reread this entire post and I don't think there is another way to interpret the "sugarcoating" and now the reference to minimizing major brain surgery to be directed to anyone's post other than mine.  This thread is about a Mom whose son is going through a very tough decision making process that we all have faced or are still facing.  I tried to give emotional support so that she could step away from that burden 24/7.  You don't need to clarify again or state that it is difficult to communicate intent in this type setting.  You obviously feel my support was misdirected and potentially harmful.  Your emphasis on the fact that bad things can happen is why I avoided this forum prior to my major brain surgery a month ago.  I knew bad, potentially devastating, life changing things could happen.  I'm pretty sure everyone that has done any research after their diagnosis is aware that this can be serious.  You may feel my brand of support isn't helpful.  I'm not sure that telling people over and over that bad things can happen is helpful.  For those of you in watch and wait, choosing radiosurgery or microsurgery or in limbo wondering if the treatment chosen will be the end of the journey or the beginning of a longer journey....good things can happen too.  I wish everyone the very best on their respective journeys.  It appears I'm not a good fit for this forum and I appreciate you pointing that out so many times in this one thread.

Thank you Kathleen. You have been very helpful. Sometimes the kindest thing you can do for someone is tell them the truth and not sugar coat things. Thank you so very much! I'm sorry your tumor had regrown 7 years after they removed it all with microsurgery. Thank you for sharing your two cents. I agree with you that major brain surgery should never be minimized.

The only contribution I've made to this thread since we last spoke was to Kathleen, where I praised Kathleen for her comments (see quote above).

My comments were friendly, positive, and in the spirit of the ANA forum.

With all due respect, I never quoted your post, and your name was never mentioned since we last spoke.

I'm sorry if you disagree with my point of view or misinterpreted my remarks; however, with all due respect this thread is not about you. Opposing points of view are more than welcome and even encouraged on the forum so long as they are respectful.

If you disagree with my point of view regarding sugarcoating, then we can "agree to disagree" as the saying goes. Everyone has passionate views, and at the end of the day we are all on the same team.

Not that I should have to defend my self; however, as many on the forum know I was initially diagnosed at Michigan Ear Institute last summer. The reference about "brain surgery should never be minimized" comes directly from their website! The Michigan Ear Institute's website under the section "SIZE OF TUMOR."  Please take a look for yourself.

I was simply passing along Michigan Ear Institute's words of wisdom, which is a good thing in my opinion. I stand by my comments.

Michigan Ear Institute says "surgery should never be minimized, and the risks of surgery include death."  As far as I know, death is not a side effect of radiation.

Our fellow forum member, and senior contributor PaulW, had a friend die on the operating table from the surgery. So yes, the risk should never be "sugarcoated" or minimized in my opinion. I hope anyone considering treatment factors that into their decision making process. As the proverb goes...a true friend tells both sides of the story.

I feel like I'm walking on egg shells around here before I post.

Best wishes.

http://www.michiganear.com/ear-services-acoustic-neuroma.html

[Director]

I have been notified about the tenor of the recent posts- I do not see any ill-intended posts, and hope you all can move on with this or other conversations.
Thank you all for the support and advice you provide.
Allison Feldman, CEO, ANA

[ANGuy]

There are horrific risks involved with radiation and to state otherwise is, at best, incorrect.  There are risks involved with any treatment or observation approach. 

I have been shouted down by cheerleaders for pointing out the risks of cancer from radio therapy, and I probably will be again.  Never-the-less, check and see what the long term research on the safety of radio-therapy is for AN's. 

[mcrue]

There are horrific risks involved with radiation and to state otherwise is, at best, incorrect.

I respectfully disagree.

Just like (paraphrasing the  ANA motto) it's important to find an Acoustic Neuroma team of surgeons who offer the most experience specifically treating AN's, who work at top-notch AN facilities considered Centers-of-Excellence, and who offer the highest success rates specifically treating AN's with the highest yearly volume of AN surgeries, it's also equally important to quantify statistics and risk regarding the individual treatment options for AN's.

As an analogy..... if one were to be in a plane crash or were to get hit on the head by a meteor while stepping out on their front porch, that would be considered truly horrific; however,  the likelihood of those events ever occurring are very remote.

Please read what senior ANA forum members (ANA Administrator, Moderators, etc) have opined in the past regarding this topic:

https://www.anausa.org/smf/index.php?topic=15147.0

These people have been around the AN world much longer than most of us.

There's a reason the ANA forum has several "sub-categories" such as: facial paralysis issues, eye issues, balance issues, cognitive/emotional issues, headache, etc. While some radiation patients may visit those sections, I believe the majority of those categories are visited by post microsurgery patients.

With all due respect, I don't see any sub-categories addressing the "horrific risks" in regards to radiation; however,  unfortunately almost everyday you find people struggling with many of those issues post-op.

In addition to the link I provided featuring contributions from senior ANA members, The Michigan Ear Institute also features a rather comprehensive list regarding microsurgery:

http://www.michiganear.com/ear-services-acoustic-neuroma.html
 
Finally, I submit these comments in good faith and with good intentions. They are solely my opinion, and not intended to offend anyone. Best wishes to everyone on their AN journey.

[Director]

Folks, PLEASE keep the discussion to the original topic. Keep in mind the original poster's intention. If this discussion continues on the current path, the thread will be locked. Suggestion is to take the discussion offline through PM if you would like to have 1 on 1 conversation. We are watching this thread very carefully.
Allison Feldman, CEO, ANA