Renee's video

[linnilue]

I would like to ask everyone who is responding to Renee's YouTube video to move form Adrian's and Sam's post to this new post.  First of all I think that Adrian and Sam have had quite a difficult road so far. However today we can all rejoice knowing that Adrian has gotten the go-ahead from his insurance company and he can go to Tampa to have his surgery done by the expeerts he has chosen.  I can't tell you how happy I am for them.  Now, onto Renee's video.  Jim Scott's post was absolutely online with my thinking and I would love to see it moved here.  Let me be perfectly clear, I am very happy for Renee, she is so very lucky and she has done a great deal of work on her life through this difficult situation.  I applaud her for that.  I think that we can all view her recovery as a significant accomplishment.  But that is not the issue.  The real issue as both Jim and I have said is the "2 weeks to live."  It stings.  It raises the fear level to 100% in a newly diagnosed patient who is already reeling from the idea of a brain tumor.  That is a real problem for me.  I am obviously "the nurse" that she is talking about.  I am speaking as a member of the medical community and as an AN patient.  This statement just drives me crazy becasue you never hear things like this.  Believe me, it immediately would drain all hope from the patient and put them in a place of compromised decision making.  That is why I wish that that statement was not on that video and that the video was not swimming around the universe with this terse statement.  I want patients to know there is hope and yes, Renee's shows us that there is hope and she did recover but "2 weeks to live" dies with the hope.  My heart goes out to everyone with an AN it is not easy to get the news and we are all in the same boat, large or small.  We are here to support one another as is a very common thread here.  But we need to be sensitive and yet honest to all newbies and old/newbies.  Enough said.  Now let's carry on.  I wish you all well.  Holly

[ppearl214]

thanks Holly. Looking forward to further participation of this discussion......

Phyl

[Samantha n Adrian]

Thanks Holly! (nikynu) We are more than relieved. :)But I will post a reply about it in our thread.

I agree with you on Jim Scotts response. I could not have said it any better than how he did. And not sure how they "move" threads so I just wanted to place the quotes here for both Renee and Jim.

Here is the video on youtube for those who may not have seen.
http://www.youtube.com/watch?v=3pQ7RAeHYew

Renee's:

Hi I am Renee"that girl" from the Youtube video and wanted to reply to the post about this video.

First of all, (to the nurse) I respect your opinion. However, I am the one who has lived my life.  It seems unfortunate that you do not honor that all people, all bodies and all situations are different. All AN stories are different....I am also not sure why you think the video is "scaring people and should be taken down?".  I have more than 100 people contact me, with and without AN that have felt hope and inspiration  The whole point of this video is hope and self acceptance.

I intuitively "got guidance" that something major was going on in my brain since age 20.  I had Tried to get diagnosed for 10 years, being written off as a beautiful woman with "pyschosamatic problems"... I stopped even tryng to get help until my body told me it was "dying". For months, I went through many misdiagnosis again but kept going until I got the MRI... and then saw the tumor.
I had so much pressure in my head and facial nerve loss at the time that my doctor, though I had serious insurance problems, moved mountians so that I could have the surgery done within weeks of diagnosis because they did not know what was going to happen soon....My whole right side of my body was becoming numb (I was walking on crutches) because my tumor caused my head to shift it's weight and was putting pressure on the cranial nerves. My immune system was so slow that I developed major urogenital issues.  Many functions of my body were negatively effected. I could not walk straight at all. One week before the surgery I lost vision completely for four hours and was rushed to the ER, vomiting uncontrollably. WHY? of course I have no idea but this is how MY Body was reacting. No two people are the same!
When they removed the tumor, it was the only thing holding my facial nerve together and my doctors- who have done MORE AN surgeries than anyone in the US said this was THE most aggressive tumor they had ever seen. It was stuck to the brainstem.

I share all of this because: I was told that since my facial nerve was severed that the odds were not so great of having normal facial function. i was told that it takes 14-18 months for the nerve regeneration at that level. However: within 6 months, through prayer and visualization the nerve returned greatly. Do I have total function? NO. But I am self accepting and radiant anyway. Most peopel donot even notice unless I bring it up. I still did some modeling after the surgery and six months later was doing 15 miles, despite that I had a very diffcult time recovering vestibular wise. Many miracles are possible!!
 
I was intorduced to someone who is involved in this community. She gave me this link and I am glad that I visited so that I can communicate clearly My Story. I do not visit these links. I wrote a story for the ANA association that was published after the surgery that I felt really good about sharing. My intention has always been to inspire. I let go of the AN on all levels. I do not want to seek out the past. I have moved on with my life and enjoy a very rich life despite my "disabilities".  I choose to invest my time in health and feel that is the key to REALLY recovering.

Many blessings and Much compassion to all of you whom have had the AN experience. I truly honor you and hope that you have been able to recover inside and out.
renee airya

Jim's:

Hi, Renee:

Thanks for your informative post that helps explain what happened to you, as related in the video in question (I've watched it).

We all understand that every AN patient is an individual and our AN experiences are always different.  Apparently, your AN had grown to the point where it had severely affected your brainstem - with the resulting symptoms you described.  I have read that, if left untreated, this is exactly what can happen.  I also acknowledge, based on my own surgenon's statement, that an untreated acoustic neuroma tumor, due to it's location, can eventually kill you.  I'm very impressed with your recuperative powers and the great progress you've made in regaining facial mobility since your surgery. 

The only reservation some of had with your on-camera statement regarding your imminent demise is, due to the fact that acoustic neuroma tumors are rare in the general population, little is known about them - even to many physicians - and we don't wish to see misinformation being spread.  With the reach of the internet, misunderstandings can become 'facts' in a matter of days.  I believe that you probably were in danger of dying fairly soon had your AN not been discovered and treated, but the unequivocal statement that you had "two weeks to live" seemed a bit extreme, even taking into account your condition at the time.  For someone just diagnosed with an acoustic neuroma or their family/friends, to see a compelling AN patient, such as yourself, make that statement,  gives it immediate credibility.  The basically 'uninformed' person,( knowing little or nothing about acoustic neuroma tumors) then assumes they or their family member is just days away from certain death, when the AN patient in question may have a very small tumor and be nowhere near any danger of dying.  We see this happen on this forum; newly diagnosed AN patients - sometimes with very small, easily treatable tumors, almost paralyzed with fear that they are either going to die within weeks or 'become a vegetable' now that they have this AN thing in their head.  Yes, we can and do reassure them this is not the case but you can see how 'AN tumor equals rapid death' rumors can spread. 

This is the issue that motivated some of us, including myself, to question your on-camera statement that you only had two weeks to live.  We aren't doctors but we try to keep our statements factual and tend to question anyone with an acoustic neuroma tumor that seems to be exaggerating any facet of their condition, if it cannot be medically verified and has the potential to frighten other AN patients unnecessarily.  We all know that an acoustic neuroma tumor is serious and definitely can kill you, if left untreated.  That is a fact.  You likely were in danger of imminent death, but your unambiguous comment (in the video) of having "two weeks to live"' just seemed to be a bit over-dramatic, and our collective comments reflected our skepticism.  I can say without hesitation that I regret any misunderstanding that may have been generated by any of the comments made here relating to that particular issue ("two weeks to live") of the video as we admire your courage and splendid recovery from a very serious, life-altering medical crisis that we've all shared, in one way or another.

Our best wishes as you continue to recover and pursue your dreams, Renee.  We wish you well. 

Jim     

Like I said Jim says it perfectly here. I can understand Renee for feeling a bit attacked however when her personal journey, feelings and story are being questioned, but that is just not how it is meant. I can admit that it did make me start to freak out more with our situation and the possible surgery date having to be postponed. But who knows...  the reaction I received from watching Renee's story was at first scary and nerve racking and I started to cry about our situation but it also than motivated me to e-mail Adrian's medical department and explain to him the seriousness of his situation (to which I also included the link to this video) and that was when I told Adrian to see if he could get the doctor to do the same and he did... and etc, etc.... it caused the chain of events that have lead us to where we are today. What I am saying is that I do believe I stumbled upon that video for a reason and that it did in the end I think help motivate me out of fear of losing the man that I love.

Sam~

[ppearl214]

Sam, you done good on this post with movement, copy/paste, etc... thank you Phyl

[linnilue]

Sam,  You are one exceptional woman to say the least.  Adrian is so lucky to have you advocating for him and we are lucky to see your work and realize it for ourselves.  I am so proud of what the two of you have accomplished together and still have the time to respond to a new thread.  It's unbelievable.  Give yourselves two thumbs up.  I think that after Adrian recovers you two could enjoy new careers because you both have the capacity to move mountains even when they are covered in snow.  Thank you for moving the pieces of thread to this post (I couldn't do it).  You see, we are all here to help one another even if we don't realize it.  My Best, Holly   

[ppearl214]

Hi Renee,

Many in the other thread have presented "welcomes" to you and we are thrilled to see you here. 

IMO (again, a long shot for me but just a thought...) is that you were confronted with your own mortality during this very difficult time.  I have had mortality dealt to me in my mulitple diagnosis (some here know of my personal plight)... many here have not been in your shoes in facing self-mortality. Your bravery... your courage... in sharing, not just your story, but your video may be hard for some to handle, yet, for others, may not.  Again, my opinion only, is that you have been dealt a difficult pill to swallow where many others have not had to endure. You know your journey better than us here.  Sometimes, the written word is difficult when you see it in black/white in front of your face, yet, you lived it in technicolor, in your life.

You are strong in will... as are many here.  Some may have a hard time with wording... and that's ok... they are entitled... just as you are entitled to verbalize your plight as best works for you.   

Hang in there... we are truly lucky to have you here as you have much to share. We know AN's can be life-threatening.. .and sometimes, for some, it's a reality that we try to keep in the back of our minds... for those of you (like you and others here) that have endured the situation ... well, all I can do is reach out with arms for hugs and a big smile to know that you forge on... and beautifully at that.

It is good to see you here.

Phyl

[ppearl214]

Renee, I commend you... truly.  Like you, I believe in the spirit of "mind over body" as it can cure what ails you.  Like you, I have no fear of death. Each of us handles situations and experiences as best as we know how..... for you, it's worked wonderfully and I'm tickled that you are doing so well.  You are an inspiration.

Love is always good... so are huggles

Phyl

[Windsong]

i posted this and was asked for a subject title?


 right now I have to say that the post for moving it over had me wondering why it was moved at all,  as
this new one is about the previous post and made me wonder even more about why it was moved in the first place  when after being moved the first posts  in this new thead dwelt more on the previous thread from which it was moved  anyway?

thanks
W.

[Samantha n Adrian]

Renee,

You seem very defensive in your post and understandably so, but please do understand that this group (or as I like to call them "AN family") here are all very warm and compassionate individuals that are willing to talk and listen and help each other by telling our own "unique" stories as well....  for all AN's as we are finding out, truly are unique.

If you say that a doctor told you that you have "2 weeks to live" than you have clarified that now and we do believe you. I was wondering since Hittlezberger is in the video if it was he who had made that statement to you? We all have heard wonderful success stories from House and have many here that visit the forum daily and share their story that went there as well. House is well respected in this forum. Adrian and I ourselves sent them his MRIs and discussed with them what they thought were our best options. As a matter of fact Dr. Swartz from House called Adrian today just to see how he was doing. Truly caring doctors there.


I had a question about some things you said... You stated you have "No fear of death" as well as

It is of course not my choice to scare people.
I chose to vulnerably tell my story and release my journey in the form of art so that people can see what is possible in the healing process. If it scares people, then that is a lack of their own belief in themselves and their own possibilities.

That is truly great that your video has helped others the way it has. And like I stated earlier it helped me as well. The fact that if we waited for surgery Adrian might die got me motivated to take on the world one insurance company at a time! I was wondering if you could clarify for me though with this quote you made, were you like this before your surgery? When the doctors told you that you had a brain tumor and had 2 weeks to live were you not scared at all in that moment? If so that is truly amazing and you are as "unique" and your AN! Wow! I do fear death... not to much for myself but losing the ones that I love dearly. I have lost 2 of the closet people in my life (my father age 45, and my grandmother age 62) both of which were to brain aneurisms and were sudden and tragic (I was in a restaurant having dinner with my grandmother when it hit her) This has made me live everyday like it is going to be my last, for we never do know when our time has come. But I do admit that I fear losing those that are dear to my heart. I don't think that this makes me weak and I do not feel that this is because of my lack of belief in myself or my possibilities, or theirs for that matter, but more so because we tend to fear the unknown. And that is exactly why I sought out MUCH information about AN's after Adrian's diagnosis. I felt 100 times better once I had done extensive reading on AN's and then joined this forum and became more informed. This forum truly has been a blessing to Adrian and I both.

I do so hope that you can get to know a lot of the wonderful people on this forum and become possibly an informative yourself. We all have huggles for you Renee. Love, support and encouragement is expressed daily on here along with our experiences and information we share.

Sam~

[sgerrard]

  Hi Renee, glad you are posting some more. As you may have noticed, things can get a little prickly around here sometimes, but I wouldn't have it any other way. When the subject is doctors rummaging around in your head with sharp objects, or zapping you with giant ray guns, I want to see a little passion and energy in the discussions. It all gets sorted out eventually.
 
  The underlying problem is that ANs are all over the map, and it is easy for one person to get more worried and scared than they need to be, and for another to not take the situation seriously enough. There was a post here recently about a soap opera in Australia, I think, which worried some people because it made it seem like all ANs were fatal, or something. But I also remember a recent post from squirrellee, who had a heart attack in the middle of her AN surgery several years ago, and still has a number of serious complications as a result.
 
  From my point of view, we need both sides of the story, or both kinds of stories. I think your experience and your passion for living your life are an important addition to the forum, and an inspiration to those who do have to confront the most serious kinds of ANs. I also want to see Nurse Holly jump in with her boundless compassion and concern for people's mental well being. Having both is what makes this forum so good.

I can't actually bring myself to say huggles, like Phyl always does (except in the round about way I just did). But I do appreciate your video and having you here.

Stay well, Steve

[linnilue]

  Hi Renee, glad you are posting some more. As you may have noticed, things can get a little prickly around here sometimes, but I wouldn't have it any other way. When the subject is doctors rummaging around in your head with sharp objects, or zapping you with giant ray guns, I want to see a little passion and energy in the discussions. It all gets sorted out eventually.
 
  The underlying problem is that ANs are all over the map, and it is easy for one person to get more worried and scared than they need to be, and for another to not take the situation seriously enough. There was a post here recently about a soap opera in Australia, I think, which worried some people because it made it seem like all ANs were fatal, or something. But I also remember a recent post from squirrellee, who had a heart attack in the middle of her AN surgery several years ago, and still has a number of serious complications as a result.
 
  From my point of view, we need both sides of the story, or both kinds of stories. I think your experience and your passion for living your life are an important addition to the forum, and an inspiration to those who do have to confront the most serious kinds of ANs. I also want to see Nurse Holly jump in with her boundless compassion and concern for people's mental well being. Having both is what makes this forum so good.

I can't actually bring myself to say huggles, like Phyl always does (except in the round about way I just did). But I do appreciate your video and having you here.

Stay well, Steve

  Gee Steve,  I thought I already have shown my compassion and concern for people's mental well being.  I was VERY CLEAR in my response to the video, it was not about Renee's journey at all it was about the doctor's statement.  But, I knew in my heart of hearts (of which I have one) that my statement would be misinterpreted.   I don't think we need to be taking sides here.  I too said, if you would reread my posts that Renee's story is one of inspiration but already "we" have lost track of the " 2 week" statement.  Are you in the medical profession?  Do you know my situation.  I haven't bared all here but I have shared alot.  I do not need honors for my long journey of recovery which was quite difficult and like Renee I too have been quite successful after almost 2 years in bed.  Is that a good enough story for you?  Do you still think I lack compassion for others?  I too, like Sam lost my  father when I was 10 months old of an aneurism and my granfather of the same thing before I was even born.   And one more intresting factoid, kind of like Renee, my husband suffers with chronic pancreatitis and is hospitalized frequently.  How much more of my life would you like?  I bet you didn't know that I am one of the bigest fundraisers for non-profit agencies in my state.  Is that boundless compassion ?  Or do you need more?  Did you know that every Christmas that we anonymously provide food and gifts for several families in our community?  How much more do you need?  Is my suffering not enough?  You have no idea what I ahve been through, the struggles were endless and I ask noting of anyone, except to be compassionate and sympathetic to others.  Have a nice evening, Nurse Holly   

[linnilue]

One more thing.  When I was left undiagnosed, nauseated day and night, lost 65 pounds, couldn't get my head off the pillow, my doctors were mystified, didn't know what was wrong, they just kept saying, you are very sick and we don't know why.  It was much later when I started to recover that they told me just how "concerned they were for my life."  I was glad they didn't tell me before because I might have given up. But then again, I was so sick, I didn't have the energy to care.   

[sgerrard]

Gee Steve,  I thought I already have shown my compassion and concern for people's mental well being.

Uh oh, I have been misunderstood, my apologies, Holly.  Here is what I meant to say:

When I said

"I also want to see Nurse Holly jump in with her boundless compassion and concern for people's mental well being. Having both is what makes this forum so good."

I meant: I want to continue to see you jump in with your boundless compassion and concern for people's mental well being, as you always do.

I was trying to say to Renee that I want to see both her point of view, with all of its true grit, and your point of view, with your concern for people getting the wrong impression about ANs. I think having both makes it a better forum.

Sorry for not making myself clear, I hope it makes sense now.

Steve

[reneeairya]

Sam-

First of all thank you for sharing and being so honest about your feelings regarding death. The first comment: "of course It is not my choice to scare people. I chose to vulnerably tell my story and release my journey in the form of art so that people can see what is possible in the healing process. If it scares people, then that is a lack of their own belief in themselves and their own possibilities." This was in regards to me sharing my video and in no way associated with the "not fearing death".
what I am saying is: I can not help that this situation was my reality. I am telling my journey and that is all I can do. I release it to the public, for some people it may cause intense inspiration, for others it may be to raw and intense to see someone with facial injury, etc...
I am not responsible for how a person interprets it into their own reality: this is what you do when you share art. For example, first the video totally scared Adrian because it brought up a sense of fear about facial loss, then it inspired a call to action....everyone will take it different. I can not control how someone perceives it..
The second comment about death:
I have been on a :spiritual path: for the last 13 years. I am a healer in many areas including NLP, pilates, hypnosis, nutrition, prayer therapies..
My experience has been deep and intense. Due to the tumor I have been very ill for the 13 years, in varying degrees. Also, when I was 24 or 25 I was diagnosed with a "large mass in my pancreas" that was said to be a tumor. I was given a death sentence by my doctor. Prior to biospy, for a week and half I went into very very deep meditation, with community support, acupuncture, juices and lots of prayer. Luckily, before doing the biopsy, the doctor decided to do an ultra sound to first "find" the exact tumor location. My boyfriend and I were so happy because we "felt" it leave my body and when they did the ultra sound, it was totally gone...
Due to the fact that I had already experienced the feeling of "possible death" I was not scared of death at the brain tumor time. My fear was in quikly making the best decisions for me. I was going to go on a vision quest and heal myself and then due to loss of vision, copled with wanting to "challenge my fear of surgery", I decided on that. Also, when you meditate and cultivate your awareness and spirit... for me- it has provided freedom. I do not fear death, however, I do not have a huge joy in suffering! I do not think we are meant to suffer, which I why I choose to find lots of stories of miracles and beauty in love and life. Like you, I totally VALUE life, which is why I always want to have quality of it, surround myself with love and peace. I also want the most time possible with my love ones  and also realize that God really runs the show and knows when our time is right.
The love and beauty that your relationship is providing all of us who witness is just grand.
Peace to you
R

[reneeairya]

Holly,

I just wanted to reply because I read your last post and felt sad about it. I have only been here one day but see how this community values you and your process and path. I do not think that post was made to challenge your compassion. My heart totally goes to you. You are indeed a woman of strength...
I see how you have now felt forced, as I did, to defend yourself, by stating all of your compassion evidence, when you were "possibly being taken the wrong way". Please know that I also had the same response, which is why I came on here and more clearly stated my story. We all want to be seen clearly. The point is not how much we have suffered but how we can live now (my whole point in the video..). I simply felt I had to put all this "evidence" by staing my experience so people would better understand what the 12 min doc did not include.
I do also want to bring up (to clear the energy) that I recognize that you made a Second post that was "validating' parts of my experience. Thank you. I do know that there was another post..  and I sent you a personal reply to this post , but it has now vanished from the archives.... a first posting in which you stated a handful of times the nonsense, exageration, no way this was true, etc etc...
without any positivity (or even curiosity) until I came on here and other people started posting more positve comments.
That is just the way that it happened. My own sadness from this is the seeming double standard that I breifly witnessed of "not wanting newbies to be scared with my video" but then bold, sceptical comments towards me with no regard for me also being a peer .. this did not make sense if the whole point was for acceptance and support in the AN community. I am sure you did not mean it on purpose to hurt me, just as I have not meant to scare people with my journey.
The point of this site is to love and support and get the egos out of the way. This is the last comment that I am even posting about this video, unless persons want to email me and require/desire support in healing. There are so many more amazing things to be talking about than misunderstandings. I hope we can get on the same page with this and give big group hug.
Cheers Renee