A place to vent

[linnilue]

I am so happy and relieved that the people that post on this site feel comfortable enough to vent their personal frustrations with others.  We should all feel honored that we are the recipients and participants of such personal and sometimes profound information regarding very private medical and psycological issues.  I am proud to be allowed into this zone of opportunity.  aA you can see there is so much for all of us to learn both pre and post radio or micro surgery.  Both newbies and oldies alike can peruse this site to gain very valuable information, good or bad it keeps us all sane because we all have the same tumor, large or small.  Despite the medical intervention we choose there exists three outcomes, good, bad and mediocre.  These tumors effect our lives forever, just like cancer the tumor takes on a life of its' own.  And just like cancer the options are numerous and there are always three outcomes, good, bad and mediocre.  what is different about cancer is that it is through research that I feel that the doctors are much more realistic and forthright about outcomes and with AN's I think they(the doctors) are not quite honest or forthcoming about the longterm realities.  Therefore, I think that people are just in giving / venting their feelings, frustrations and REALITIES of micro/radio surgery.  Especially for "newbies" (of which I am one even though I am 2 1/2 years post radio) because there is no place to do any really good honest research on all of the implications following either one of the techniques available.  I wish I could've seen what people had to say about their own personal and private experiences, my choice certainly would have been influenced by these threads because the honestly is implicit.  I wish I was a "watch and wait" I wouldn't have done anything until I was forced by circumstance.  I am disappointed by the reaction of others who don't want "newbies" to be scared.  This information is not to scare anyone, it is to inform them of the absolute truths.  I am very disappointed by the notion that we should not "let this information get out of hand and we should be supercautious."  Why?  Because the truth is real?  Because people will make the wrong decision?  I don't beleive that for a minute.  I think people love honesty and I hate skirting the truth.  The truth will always set you free.  I have multiple issues following radiosurgery and my information is not to scare anyone, it is to inform them that all procedures have different outcomes and once you know that you can make the best decsion for yourself.  Everyone please keep posting about this.  I take great comfort in knowing that I am not alone, that I am free to come here to be apart of a group that I love and take comfort in its' presence and take comfort from the strength of others.

[er]

PPearl214
What is the difference between   microsurgical &. radiotreatment? 
Reading my recordes that I have, states ,The patient is willing toward a suboccipital craniotomy for microsurgical removal. 
He did not advise for watchful waiting
and no radiation
Please explain
eve
PS
I finally down load the photo taken of my self after my third month of surgery,   I look at that & I do look 100% better
Even though when I smile or talk my mouth is crooked .
the dumb blonde and off balance only last long enough until I go in and take a 20 minute or so rest 

[Jill Marie]

I believe that venting can be a postive conduit to healthy mental health. Why. Simply because as human beings we need to release our anxiety and concerns knowing that not one person on this site can change your physical condition but can change your mental stability. You relate with people who have the same thing. I thought this was one reason for this site.If we intend to sugar coat everything for newbies then we are  fooling ourselves and them.Life is not a bed of roses. Some come through with flying colors in AN surgery or radiation or microsurgery while other's have complications. We all have a right to feel down as Gary says. If we have too resort to playing footsie on the site-that we might offend someone because we are venting-well to tell you the truth I would rather resort too correspondence then with people on an individual basis.

I've spent the last 15 years wondering how others like me deal with having had a Tumor. After searching and searching for info. about people that have had Facial Tumors I finally gave up and tried to find a forum about AN"s as that was the most common info. I found when asking my doctor about how to deal with my issues.  When I asked for phamplets about Facial Tumors from the surgeon, eye doctor or info. on  the internet I alwasy get the same thing, it's sort of like an AN. 

When I first posted I wanted to let others know that after dealing with this for 15 years I was doing fine, married 30 years, same job for 12 years.  Then it hit me, what I NEEDED was to know how others TRUELY felt about their situation and how they dealt with it.  All the info. I have read on how to protect your eye, what ointment to use and how to handle various situations you come across in public have been great.  Then came the chance to VENT, the venting really helped, but the best part was seeing that others needed to VENT as well and reading what they vented about. 

Someone posted on here a while back that they wished they could take a vacation from their medical issues.  I think that is what got me going last Friday, here it was, the Memorial Weekend, I worked really hard all week and just wanted to relax and enjoy myself.  I can take a vacation or Holiday from work, laundry & house keeping BUT I can't take a vacation from putting ointment in my eye every 15 minutes!  Jill

[Jill Marie]

I am so happy and relieved that the people that post on this site feel comfortable enough to vent their personal frustrations with others.  We should all feel honored that we are the recipients and participants of such personal and sometimes profound information regarding very private medical and psycological issues.  I am proud to be allowed into this zone of opportunity.  Both newbies and oldies alike can peruse this site to gain very valuable information, good or bad it keeps us all sane because we all have the same tumor, large or small.  Everyone please keep posting about this.  I take great comfort in knowing that I am not alone, that I am free to come here to be apart of a group that I love and take comfort in its' presence and take comfort from the strength of others.

Well said, I'm going to post a bit about the bright side of life but I will be back to vent when I need to and will certainly be here to read what others Vent about.  Jill

[Joef]

I moved the topic to AN Community , I hope no one was lost in the move!  I do ask that we tone things down a bit or move this to offline PM's .. as Phyl stated,  we don't be a downer or scare newbies off! we all need to vent once in a while.. but like at the office .. I close the office door first     

[Gennysmom]

OK, I have a huge respect for you Joe, but your post begs a question for me....is this forum more concerned about scaring "newbies" or supporting patients?  I was here 4 months pre-op, and now for almost 11 months post-op, and I think this IS toned down in comparison to some threads I have seen that have been removed and I would be horrified to think that everything I learned pre-op was "sugar-coated" for my behalf, because that was the "real" focus of the forum here.  I think if you don't let patients be real, then what is the purpose of this site?  To continue the fallacy that having a brain tumor is a breeze?

[msuscottie]

Well said Gennysmom, I agree. I come here because I appreciate that things aren't "sugar-coated." I get enough of that from my Doctors.

[Jackie]

Good morning all,

I just needed to put my two cents  in. I recently went to a gathering of An'ers and being the newest member to be diagnosed, listened very intently to the others. What I gleened from the experience was absolutely "be informed", ask questions and make sure before you do any procedure, you know all you can possibly know about the possible complications. Also it is tantamount that you choose wisely the surgeon to do the procedure. After the shock wears off of the diagnosis, if you are lucky enough to have the time to "wait and watch" do your research. So many people that I spoke with afterwards had regrets of their decision to have a surgical procedure and are unhappy with the results. These were people who only spoke to one surgeon and were made to feel they needed to do something right away! After all surgeons do surgery!!! That is why all of you on this forum stress, be informed and continue to research what is best for you! One gal I spoke with is dealing with debilitating headaches, and many other post surgical problems and when she complained to her surgeon, he told her "She had a textbook outcome, quit complaining"! Just another reason to really check out whose doing the procedure and what kind of care will you get post-op.

[Lainie181818]

How sad we have been banished to the AN community room. So much for freedom of speech. This no longer feels like a support group. For some people this is the only contact with the AN world. Venting is part of the healing process as well as good days. This moderating seems more like censoring. Now i really feel like venting with nowhere to go.
Lainie.

[ppearl214]

Please note that the move of this thread to the "AN Community" forum is so that the "community" can feel free to share these emotions.... not a "censorship" of posts. As you can see, no one's posts have been edited or deleted as everyone has something of value to share.  The move was just to move it to a more free-form discussion forum.  As Joe also noted, for those that have stronger feeling regarding a particular vent, it is asked that you share that amongst yourselves in private email.

Please know that we all share many of the same feelings/emotions that you share (myself included) and all are respected... nothing has changed.

I now return you to your regularly scheduled broadcast.

Thanks.
Phyl

[linnilue]

Please note that the move of this thread to the "AN Community" forum is so that the "community" can feel free to share these emotions.... not a "censorship" of posts. As you can see, no one's posts have been edited or deleted as everyone has something of value to share.  The move was just to move it to a more free-form discussion forum.  As Joe also noted, for those that have stronger feeling regarding a particular vent, it is asked that you share that amongst yourselves in private email.

Please know that we all share many of the same feelings/emotions that you share (myself included) and all are respected... nothing has changed.

I now return you to your regularly scheduled broadcast.

Thanks.
Phyl

I think that is is a purely "politically correct" statement and I am so sorry to see you post this.  Every time soemone starts a thread which is deemed to be "too sensitive" and/ or "private"  the response by you moderators is to "tone it down."  Excuse me for exposing the truth but shame on both you and Joef for attempting to move what you consider "sensitive" material to another thread.  You are censoring, whether you want to believe it or not.  I am very disappointed.  I felt like a real person again once I knew that others had the same symptoms and results as myself.  Given the fact that most doctors jsut roll their eyes and don't give you the real truth, I found solice in this site.  Today I am disgustd by the response from the two of you.  It is as if we should not put forth the truth because the truth should be hidden, it's like you are manipulating what we are alllowed to say.  Both of you should rethink your responses.  I want the truth, if I had known the truth I would have given much more thought into making an informed decision.  Isn't this forum all about making informed decisions based on the results which are clinically present within this population?  Ask yourselves why you think that you should be able to control this information.  I think I know the answer and I don't like it.  I believe in giving patients all the information that they need, all the possible side effects that are possible and I want to know the numbers.  I am a nurse and have firsthand knowledge of full disclosure, theerfore I think that both of you are very wrong in moving this thread. I wish you would rethink it.

[nancyann]

No offense Nikynu, but I don't see a problem with just 'moving' this subject to the appropriate site of AN Community.  Lighten up my friend, we've got bigger issues to fry.

[TP]

I've read many threads on this site, I agree with most but there are some I don't agree with at all, so I type my response to those I don't agree with and then delete it or I just go find another thread and move on! The nice thing about this website is if you don't like something there are many other topics to find and spend your time reading.

However, when this particular thread started I really enjoyed reading it! I could relate to all the irritating side effects and issues with listening and communicating with my day to day life. I found myself laughing out loud. Knowing someone else is going thru this (although I don't wish this on anyone) does make me feel a little better knowing someone can relate to what I am going thru. Missing half of the conversations going on around me, taking forever to eat my food, having a messed up eye, these are just a few of the simple tasks in our life we take for granted but now have become mini obstacles to remind us daily of our situation. So when I read that we were being told to tone it down or we need to be more positive - I personally took offense.   I try very hard to be positive most of the time.   I think everyone so far has been very adult, no one has used any harsh language and folks have spoken from their heart. I pretend daily - saying I am doing great. I have bad days but I don't tell folks in my daily life that cuz I don't want too be "negative" or come across as "complaining". I try to be the rock solid tough gal that I have been most of my life!

So I vote that the venting thread is positive!  I've enjoyed reading everyone's venting updates and issues! It has made me feel good. Vent on!  

[Windsong]

I think putting this thread under "An Community" which states states "this section is for personal messages" is a misnomer.

The comments in this thread all seem to deal with post An treatment whatever it might have been.

Surely it is more suitable to be listed under either "General Category/An issues" OR "Post Treatment/Comments and Information" ?

[Windsong]

I moved the topic to AN Community , I hope no one was lost in the move!  I do ask that we tone things down a bit or move this to offline PM's .. as Phyl stated,  we don't be a downer or scare newbies off! we all need to vent once in a while.. but like at the office .. I close the office door first     

I prefer open doors.....

I wouldn't be on the net reading about Ans except that I want to know things, all things.....

I don't eat candy either.