ANA Discussion Forum
General Category => AN Issues => Topic started by: linnilue on August 29, 2007, 12:53:53 pm
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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
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thanks Holly. Looking forward to further participation of this discussion......
Phyl
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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 (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~
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Sam, you done good on this post with movement, copy/paste, etc... thank you :) Phyl
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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
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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
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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
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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.
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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~
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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
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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
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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.
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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
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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 :P 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
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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
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...and this is why I love a lively discussion! :)
IMO, passions run high for each of us in our own ways. I commend you all for sharing and listening and respecting each of our own emotions in sharing certain aspects of our AN journey that we have shared with each other here. This discussion certain demonstrates our inner wills, our mental strength, our resolve, our compassion for others that share a common denominator called AN's.
Phyl
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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
Thank you Steve for your response. After writing my last post I thought I might have been too harsh and defensive, not a good thing. I love this forum and I do try to respond to those in need. Finding this "place in space" has been a source of inspiration for me and I feel quite sensitive to those who are newly diagnosed and looking for support along their own personal journey. That is the reason that I wanted this discussion moved from Sam and Adrian's post because that belongs to them and I wanted it to stay that way. That young couple should inspire all of us. You are a very honest man to come forward and "right your wrong" and that is honerable and I thank you very much for. I needed it. Have a great day, "Nurse Holly" :)
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Defensive ?Hmmm.............
hi renee,ever been to the haight/ashbury area ?
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Defensive ?Hmmm.............
hi renee,ever been to the haight/ashbury area ?
gotta love San Fran! One of my fave cities to spend time. :)
Phyl
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Haight/ashbury?
Yes, I have visted. I have several friends in the bay area + berkley. I generally travel between San Diego and Santa Monica/Venice/Topanga. My dad lives in Virginia, my sister Portland and I was born in Indiana.
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hi renee,you have stumbled into a very supportive group,welcome.
i grew up in los angeles,went to santa monica jr high,graduated from hollywood high.
i sense you got off to a rough start,as with AN's , all shall mend.
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Hello again, Renee:
Thanks for the updated post.
I'm sorry you felt a bit beleaguered and 'picked apart' by earlier posts that commented on your YouTube video but when you choose to place a video on the internet, you have to be cognizant of the fact that many people will view it and none of them will know you. That removes context and can result in misunderstandings. The same applies to internet message board postings. We're all somewhat anonymous but that gives us more latitude to be honest about our fears, worries, frustrations and joys - and to criticize when we feel some skepticism is justified, which was the case here. I can tell from your post that you've already recognized that this forum is populated by a lot of very compassionate people. Adversity tends to have that effect. One either becomes bitter and resentful or more open, hopeful and compassionate. You're a perfect example of that, Renee. Placing your video, paralyzed face and all, on the internet to share your story in a graphic way and to offer hope to others in your former situation is commendable. That your video comments generated a few questions and skepticism from other AN patients, close to the issue and knowing that mortality from acoustic neuroma tumors is ridiculously low, should not upset you. No one here knows you personally and most of us tend to have a certain degree of skepticism regarding almost anything posted on YouTube.
You're correct in reminding us that you are a peer. That is exactly why your video was of interest to us and why you were welcomed here. You are also correct in pointing out that you had the courage to show your face (on the video) in a semi-paralyzed condition, which was clearly difficult for you, as one would expect. You seem to feel slighted that no one commented on that aspect of the video. Actually, we did, by praising your courage. Apparently you overlooked those comments or, more likely, did not apply them as they were intended. I trust that misunderstanding is now past us. You have, indeed, had suffering in your life, Renee. So have we all. The majority of the people posting here are somewhat older than you and, because of having an acoustic neuroma tumor, have had to see successful careers sidetracked, good jobs lost and even marriages tested more than they should be. A few have even gone into depression. Some had friends basically abandon them because they didn't understand what the AN patient, who 'looked fine', was really going through. Trust me, we know about suffering, Renee. We really do.
I stand by my opinion that someone totally ignorant of acoustic neuroma tumors, watching your compelling video - as it stands - would come away from it assuming that an acoustic neuroma diagnosis equals a quick death and only a miracle (and iron will) could prevent it. That would be as unfortunate as it is untrue. Yes, your story is certainly inspiring because it has a happy ending but I can tell you from experience that many people will only see/hear the 'two weeks to live' part of your video and then jump to mistaken conclusions regarding the mortality rate associated with an acoustic neuroma. I trust that your promised addendum (to your video) will clarify the matter and bring a better level of understanding about the - as you stated it - unique situation you were in at the time of your diagnosis. I want to add that I don't view folks who suffer debilitating symptoms (as you did) and then receive a diagnosis of an acoustic neuroma tumor and freak out (for awhile, anyway) as weak or otherwise lacking in personal courage. They are simply human.
We come from very different backgrounds (and eras) but I think we share the same goal, Renee: encouraging those diagnosed with an acoustic neuroma tumor. Once again, I regret any misunderstandings and subsequent resentment you may have experienced as a result of comments made on this message board regarding your video, but, as I mentioned earlier, public exposure to an 'audience' that knows little-to-nothing about you can sometimes bring unwarranted (and unwelcome) criticism. The folks that post here are truly compassionate but also hyper-sensitive to mis-information regarding AN tumors. They have good reason to be. Fortunately, you took the time post here and clarify your experience for us. We truly appreciate that, as well as your good wishes for us all. Of course, we offer the same understanding and encouragement to you. Now, don't be a stranger!
Jim
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Hi All,
Many blessings to you and thank you for your comments. I want to clarify, as I did in an earlier post- I did not actually put the video on Youtube. I did not even know it was there until months later. The director put it up to show his work. He has other films there, too :) One of them won some awards. It was made for a 48 hour film festival of inspiring films called "elevate film festival" in LA. If any of you live there, I invite you to look them up on the web. The gathering is amazing so if you get a chance, go.
I have been so blessed with great support in my communities, not AN, but just general healing friendships with creators, artists and lovers of life who have never seen me as different since the surgery. Before I had surgery I did unfortunatley visit a forum that was very very depressiing and many people in so much pain, they seemed they were wallowing in it. One I remeber standing out to me was the suicidal nature that some felt gong through facial nerve damage, as well as belly's palsy patients. Of course I did not want this to be my reality, but when it was, and when I experienced such great healing, it made me proud that I could share new possibilities to those struggling with it. I am so happy that all of you moved forward and created a more conscious forum than the one I saw two and half years ago!
I also have another slideshow that you can check out if interested:
http://www257.rockyou.com/show_my_gallery2.php?instanceid=43792963
Smiles, I like to share
Renee
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Renee ... Firstly I want to commend you on your video on youtube! I have sent that link to many friends, family and co-workers so they know can learn what maybe to expect when I have surgery.
Here is my story .... and firstly let me apologize that I am not any where near as eloquent a writer as anyone who has posted on here - - I seem to have alot of 'brain fuzz' lately :(
Before I was even diagnosed as having an AN I was told by one of my mommy friends on my mommy board that I should 'google' acoustic neuroma ... as my symptoms were the same as what my mommy friends dad had. I learned a lot about this condition even before I was sent for my MRI - so I already knew that these were benign tumors but 'like the rest of us I NEVER thought for one minute that I would be told that I had a brain tumor - I just figured it would be some sort of weird virus and I would have to learn to live with it .... when I was told that it indeed was a neuroma my 'mortality' flashed before my eyes! I cried not for myself but for my boy's.
I am 43 years old - and I conceived my first child (FINALLY) at 35 years old (with some intervention) - I lost a child in the 5th month of pregnancy and have had another son since )just months shy of my 40th BD) - he will be 4 on Halloween - and he starts kindergarten this coming Tues. Sept 4th!!!! :(
I am scared beyond believe but try not to emmulate that to anyone around me - My ENT told me tht they will probaby recommend surgery since my hearing on the left side is only at 25%, I am getting headaches, 'brain fog', tintinitus, and some 'loopyness' (like I having that first drink on an empty stomach' :O
Your video brought to me the reality of this and I commend you! My biggest fear is not the actual surgery but the post-op - I am not anywhere near as beautiful as you and the whole facial thing scares me tremendously. My tumor (I guess) would be considered small to med. (1.5 - 2 cm) - I am still in schock that I actually have this (I was diagnosed in late July) - - my only symptom was a sudden hearing loss in Dec. '06 but things have progressively been getting worse.
I guess I should be thankful that they found something as most people go thru all sorts of tests for different things and they are never concluded.
I just want to THANK YOU for putting a face to this condition!
We have an AN site here in Canada but unfortunately is does not seem to get the traffic that this one does. Once again thank you and God Bless and iif you ever decide to visit the 'Great White North' let me know....
You truly are an inspiration as are all the AN patients on here!
THANK YOU!
p.s. I FINALLY have an appointment with one of our Cdn' world renowned specialists on Sept. 25th - I was joking with the gals at work that I must have a HUGE brain as I have (2) cds full of images to take with me to the appointment.
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Denise-
Yes, one goes through a roller coaster of emotions before, during and after diagnosis of the AN. You are so not alone..I am glad that you now know!
My advice would be to get as much info as possible about surgery and radiosurgery options and wait until you find what you are totally aligned with as the best choice. For sure find the surgeon whom has successfully done the most AN surgeries. I was told by my doc's that facial nerve damage is less than 1% these days. I was that lucky 1%! But my tumor sounds world's of difference from yours.
We support you and honor the situation you are in. Feel free to personally email me if you have specific questions. I can tell you all of what I believe helped me in recovery...from hypnosis to prayer and visualization.
Lots of love
R
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I had a nice visit with my son tonight (he picked up the salmon and brought it over, then grilled it, yum) and before he left I showed him your video. He sat down and watched with me and afterwards his first comments were about your courage in so many ways, and in the fact that you had even made this video and had the courage to include your face post surgery before the healing took place. He admired you and complimented you on your determination, and your healing process and approach. I was glad I could show him this as it let him know that despite what can happen to one, one can with the support of good people and self determination and prayer and various healing modalities, make good things happen. For myself it made me calmer about some weird effects I have had on a couple of occasions with my own smile which has thankfully settled down ( i think it was nerves being irritated either from the An or from the radiation treatment that I had.)
Again thanks so much for sharing this.
all the best,
windsong
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Renee's slideshow link has a slide with the caption "But most of all: LOVE vulnerable & raw".
That is what I love about this thread. Renee, Holly, Jim, everyone, posting from their heart. It is vulnerable and raw; it takes two or three replies to communicate successfully; there are misunderstandings and hurt feelings and dismay; but there is reconciliation, and new understanding, and huggles in the end.
I'm sure I will find some more threads in which to discuss the technical details of this or that treatment, and I will enjoy that as well, because I like that kind of stuff. But I will always value this kind of thread the most, because it is about what it feels like to have a life changing experience, and what it is like to put together a new life afterwards.
Thank you all for sticking with it and making it a great exchange.
Steve
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Jim:
Hello, I forgot I had not written back to you, yet :)
Thanks for your heartfelt comments.
All is well. I did feel I wanted to come here and shed some clarity about the film, since in the beginning there were several slighting comments. I have learned to be curious and ask questions, or so I thought until I wrote with some defensiveness and did not shed all the compassion that I could. I realized it was not about "someone not believing me" (even though that is what was said..) but it was more about wanting to help and protect other people. That is aligned with me.
I tried several times yesterday to make a note on youtube and for some reason the comment would not post.. I will stick with that until it happens.
Have a wonderful weekend and do something fun :-*
Blessings
Renee Airya
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Hi Renee,
I would like to thank you too for being able to share so much of what it is like to have an AN with so many people. I have recently met another person that just had AN surgery (4 months ago). Now that was something special. To see someone else going through the same kinds of things that I had only recently endured was very emotional for me. We had a great few hours together and will keep in touch for sure. I know his pain. And if i could, I would not have anyone else have to go through any of this ever again.
I also would never have my children go through the terrible pain of believing their mother was going to die from a brain tumor. But that is what happened when an uninformed and egocentric ER doctor decided to tell my family something that was far from the truth. I cannot tell you how terrible it was to watch my three kids standing there, beside my bed, crying and crying. I would do anything on this planet to not see that again. Our world turned upside down for a day and a half, until the neurosurgeon came to my hospital room and explained that I was not going to die. What a roller coaster ride that should have never happened!
After watching your video, I did think it was informative for people that may be having to deal with all this. It is uplifting to see someone with such determination doing so well. That is the wonderful human spirit. I only wish it had not had the death sentence attached to it. For most people that watch it, they will enjoy the entire video, but for a small percentage of lost souls, they will hang on every word because they are so freightened and unaware. They will think that they are going to die, or someone they love is going to die. I would like to ask you if you would consider omitting the part that tallks about imminent death.
I am one of the ones that had a pretty horrible experience with this whole ordeal. I do except everything that God has given me. I cannot change the fact that I had an acoustic neuroma, but I sure will try to change needless worrying and heart ache.
I hope you recieve this letter with the good intention that it was meant.
Take care
Pattibobatti
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Pattibobatti-
Oh, thanks so much for sharing :)
Glad you are still here!! and thanks for the video comments. I totally understand your concerns and want to address them. As I have mentioned many times on this thread- this is a documentary about me and my story. I am not an AN educator, nor was this film made to be that way. I also understand that people who "stumble upon it", may not know that. I CAN NOT be have the film changed. It was done for a film festival and out of my hands. I do not own the rights. I am however adding a remark on the youtube page regarding this and the unique situation of my tumor, giving persons this ANAUSA.ORG website address. To avoid misunderstandings and urgent feelings.
Also, bear in mind, that I did not make this film. I was sat down for a few hours and told my journey. I had nothing to do with the editing, or the final cut. Had I actually made the film, It would have been quite different, and would have included the whole story- but again.. I was invited to do a film festival and in the end, the hunderds of people whom have been effected positively from it is very incrediable. It is not meant to scare someone...
As an adult, and know that I was very young- 29 when I got diagnosed, I knew where to go and what to look at to find educational sources. This was certainly no challenge to me. I also do not feel that when receiving an AN diagosis that most persons would first go to Youtube as a resource. In fact, when I just did a google search youtube does does not even come up, this website is the first one listed, with many other sites following! Seems to me that there are some internet savy and AN interested individuals on this site and my film is just now being discussed here although it was made two years ago! I bring this up because I truly feel in my heart of hearts that we can all release the "fears" of the death statement and let it be what it is: my story. AND I am attaching a comment to appease the worried minds :)
The other thing to note, for contrast: Sites like this are supportive after one has had surgery, but when I was newly diagnosed they gave me fear. It was not a pretty picture that I would have surgery, but probably have all these extra problems afterward.. Even if you look at most topic headers, they are post-op Problems.. which is certainly not encouraging and one for sure takes away "my life will never be the same again.." That is one reason why I have NEVER even visited this or any AN site since I had surgery til now to comment on the video. I personally think that many "things that just have to be lived with" can indeed be transformed with the right healing. That is the perspective I want to bring. Several issues mentioned on threads omit the possibility of healing. I know spontanious miracles have occured outside of these "facts", or experiences, from hearing loss, to nerve issues, to radiation damage, etc. There are many, many alternative and safe and totally effective ways of creating higher health without limitations of "what doctors say are possible". So, you see, I also have "fears" that people get the wrong information from the web, too. It is a matter of perspective. I feel the mind is limiting (unless harnessed correctly) but the spirit is eternal. That is why I stand by sharing. That is the way to love, growth and support. It makes the world go round!!
Peace and love
Renee
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pattibobatti:
Thanks for your comments. I get a kick out of your screen name. :)
Your account of a callous ER doctor making irresponsible comments about your AN condition that had your young children in tears, thinking their mother was going to die from the AN, really grabbed my attention. I was so annoyed that I couldn't resist placing yet another post in this already well-traveled thread. I trust you and other members will be patient with me here.
Had a doctor made these kinds of comments to me and/or my family, I would have not only reprimanded to his face him for doing so, but, hopefully, without cursing, threatening or resorting to fisticuffs. I would have also made certain his superior was fully informed of this physicians insensitivity to a patient in a serious condition. In addition, I would have notified the hospital administration of my displeasure. Because doctors basically control hospitals, not much would really happen, but the physician in question would certainly be told by his superiors to knock it off, and I would have the satisfaction of knowing he might think twice before telling patients or family members they or their parent was in a terminal condition, when that was a palpable lie.
I won't belabor the specific video that this thread discusses, as that issue has been pretty throughly covered and I have little more to add. However, misinformation is rampant on the internet, as we all know, and, as your experience demonstrates, even doctors sometime exaggerate, to the point of adversely affecting patients and families, as happened in your case. This is why AN patients like those who frequent this site and forum tend to be vigilant regarding keeping information about acoustic neuroma tumors factual. We all know how difficult the 'AN experience' can be, physically and emotionally, so those of us who come through it want to do all we can to 'keep it real' and not allow misinformation to gain any more of a hold on the public perception regarding acoustic neuroma tumors than it already has. That benefits no one.
I applaud your positive attitude in the face of adversity, Thanks again for your post
Jim
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How true...
It takes guts to make oneself vulnerable.
Having symptoms with no real answers, then being given a diagnosis, is really quite monumental. In all sorts of ways.
The emotional aspect is there. Then again there is a strange sort of thing that happens when one hears that there is a tumour in one's head. It doesn't matter if its benign or not when you hear that. Somehow, if one has a "something" wrong in a part of the body distant from the head, it's easier to divorce yourself from that..... a bit like it's down there, or over there, but your head is clear..... But then you hear that, nope, you have something in your head and all of a sudden it explains why you've been foggy or unbalanced or not hearing right etc....
hugs and love and care to all here....
windsong
Renee's slideshow link has a slide with the caption "But most of all: LOVE vulnerable & raw".
That is what I love about this thread. Renee, Holly, Jim, everyone, posting from their heart. It is vulnerable and raw;
Thank you all for sticking with it and making it a great exchange.
Steve
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Hi Renee,
I wrote something to you that I have shared with few. Did you hear that my children thoutht that I would die??
Do you really care that many people will think that they or the person they love might die after watching your video.\?
Please think of others
Patti
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HI Patti long time no see!
Renee did not make the video but participated in telling her story. Kinda like being a model in a picture. You know they are taking pictures but do not know the one the magazine will chose or how/if it will be enhanced before publishing. My surgeon also had the death talk with me in front of my son. He did not realize my son was as young as he was. At the time he was 15 going on 30. My gf was with me and my son had dressed up (don't ask me why) for the appt. While waiting they had gone to get a soda together and the staff assumed it was my gf's bf or husband. Once the mistake was realized he quickly came in and apologized. I know for me my brain stem was involved and I had become very symptomatic by this time and was basically told I had good news and bad news. I had a tumor, it was benign, it was operable but if I chose to ignore it I would not survive long and the recommendation was to have surgery within 6 weeks. (He was the third surgeon to tell me this). I did not have radiosurgery as an option, I could not travel for treatment (had flown the week before and got sick on the plane). The dr's.have to discuss the morbidity issue with the patient but surely do not need to do it in front of children, especially young ones!
Renee, I appreciate you sharing your story as it gave me hope seeing you on the beach and realizing it was post surgery. I had no idea of the road I was goind to travel after my surgery due to not finding this site until after my surgery had occurred. I was not an informed patient and struggled to get where I am. The ability to see someone who had a larger tumor doing as well as you are gave me hope and determination to keep on pushing myself. Also, the ability to share your journey with friends and family in order for the to have more of an understanding of where I was and where I am was tremendous. Thanks for having the courage to step out of your comfort zone and participate in the telling of your journey.
M
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Renee,
I found your video before I found this site. It did not scare me. If anything it encouraged me. You were and are amazing. I'm the type of person who likes to know the good, the bad and the ugly. When I had my surgery last Sept, my surgeon wasn't prepared for what he found. When I went back to see him for a post surgical visit 3 days after the surgery, he was shocked I never had any symptoms of AN. I did, but I thought the facial numbness was from migraines. The balance issues because I have always been clumsy. Headaches were either stress related, migraines or hormonal. The fullness in my ear because I have sinus problems. The dizziness because of low blood pressure. I had and still have the noise and hearing loss, at the time I thought it was from ear infections. The Dr thought the fullness in ear was from an enlarged ear drum.
The Dr was waiting for the pathology report. I went home and googled ear problems. AN popped up and I read everything I could. My sons are always on you-tube so I asked one of them to see if there was anything on AN. I was amazed when I watched your video. As it turns out mine is a facial neuroma. I do not have the exact size, but my Dr said it was a mass. This mass destroyed my ear drum and wiped out the 3 bones in my middle ear. The Dr was able to debulk the facial nerve. I had a lot of problems directly after the surgery and continue to and none of my Drs had answers. This site has been a life saver for me. I have learned so much and through much support and advice I am going to see a Dr about FSR and another about GK.
This life of ours has many turns and bumps along the way. Thank God you are alive. Your journey is an inspiration. All of us have a story to tell. I think all of us can learn from one another. Sam and Adrian's journey has been spellbinding and heart wrenching. Thank God Adrian is going to have his surgery. He young and he has Sam, I believe he will recover in a relatively short period of time.
Thank you for sharing your journey. You have inspired and you have a lot of courage. God Bless you.
Anne Marie
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Hi Everyone,
I realize that Renee probably cannot do anything with changing the content of the video. That is out of her hands. I just wish she would add a strong statement to her video explaining the news she was given about 2 weeks to live is not the norm and in reality there is about a 1-2% chance of dying from the surgery she just had.
That would be wonderful. Actually, my son did get on the internet that evening when I was diagnosed. He would have been very informed had he been able to watch her video and very hopeful if it had a strong message was added at the end.
Pattibobatti
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Hi Anne Marie,
I really appreciate reading your explanation of how your symptoms could be explained without knowing about an An. It explains why some of us went without a diagnosis for some time. There's this book I have been reading lately (about healing the entire person actually) and one of the things that was mentioned is that the number of illnesses or conditions that exist that people could have far exceeds the number of symptoms that the body can exhibit. And that the number of "conditions" that are being named with new research keeps getting bigger too. It's a wonder that doctors can zero in on the precise one that one might have. It's not surprising too that some of us have this need to know all about what we do have (An) after floundering for any length of time not knowing what exactly is wrong. It's next week that you have your appt. and I wish you a good one.
Patti, I am guessing that you probably have company amongst us in terms of having experienced some painful things in connection with getting our diagnoses. I can only hope that given time the painful associations or memories get erased, disappear as it were. You and so many have come a long way after treatment. I wish you all the best, too.
One of the things I've found after treatment is that it's not always easy to forget one has/had an An. For one thing, having to go for mri's to get the all clear keeps reminding us of it. And for myself, there are times of a touch of "fear" simply from some new symptom for example. The good news is that I can come here and know that in most cases things are better. And, Renee, seeing how you overcame the facial effects is inspiring for me. I have to admit that that was something I really was scared about and then when surgery became my least favoured form of treatment given my total health picture, I was relieved that I'd escape that with rad treatment. However, about a year and a half after, my nerves acted up and I had a panicky moment for a few days when my smile went all crooked. It settled back to normal but I still can get twinges and zips and zaps of sensation. The thing is I am not so scared any more because your video story let me know that one can overcome "fear" and that a positive approach can change things. How we cope and deal with things becomes more important than the actual side effect(s).
Thanks everyone for sharing the stories you have.
windsong
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All,
Truly touched by how many of you on this thread and in my personal emails have sent messages of thanks and inspiration. I want to let you know that YOU are the ones that are inspiring and I shared my story to support YOU. It is not about me, I only told the journey of a survivor as a reflection of you. We are all ONE and you are all beautiful, now as always!
Patti, I think some emotions got a bit heated up and perhaps you did not read my posting that I am putting a commentary on youtube regarding my individual situation being life threatening and not the norm. (for some reason th system has been stuck and it has not taken my post, yet) I also want to add that I have just re watched the video ( I have not seen it in a while) and I do think it is a bit confusing due to several segments being put together out of order. This is unfortunate because it seems confusing, perhaps more for me because I know the order of things! SO I WILL put the post on youtube as promised. Also realize that the video has been there for quite some time and you all have just now seen it. In the hundreds of emails I have received, not One has stated any fear. Rather, it has alleviated many fears for anyone challenged with a disability.
I know that it is scary being given a death sentence, I was given one twice and I had to tell my family and soul mate both times..... I totally empathize and am sorry for the grief that seems to still be present concerning that. It is both a blessng and a curse to face mortality this way. Though in eastern philosophy you an "only really live after you die", consciously speaking.. ...You are a strong woman and your children know that Mommy is a survivor and I can only imagine how inspiring that is for them and how grateful they are! So know that I am sending immense compassion your way. Know that my story is my story is my story... and if you make a film, it will be your story. If my experience is not like yours, or I do not feel good about what you share- I can not try and tell you to have a different life because the way you shared it did not make me feel good. I think some people here may be forgetting that is what has been asked of me (in a few comments). I found peace with it, though. It is worth personal misunderstandings to bring light and hope to many, which is my goal.
In light and healing,
Renee
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hi renee,and a big shout out to my buddy patti .renee , too produce documentaries.
my first thought was she is going to every public forum regarding AN's to dig up some interest/feedback
for a video that she wants to enter into a film festival ,to me thats a great way of marketing.
you might want to consider all the replies you have got,and consider making changes if your deadline
for the festival will permit you to,this is your target audience.maybe letting people know that these type of tumors
are for the most part 98% benign.maybe change the 2 week death sentence to something like, can be life threating.
dont let your production staff say they cant do it,i do this kind of stuff everyday.
just my opinion.i personally like the running on the beach and the tilting your head back
while standing perfectly still,i can't wait for the day.
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Hi all,
Thank you for keeping this respectful and a lively discussion. I'm sure that Renee had to sign a "release form" for the use of her story on film/pictures. If so, then the person who holds the rights is going to use the images/films as they please. Renee has shared here, regardless if we agree or respectfully agree to disagree, that this was her journey and what the health professionals have told her. I have to respect the fact that she worked, from an artistic standpoint, with sharing her story as she wanted it to be told. Scottie is writing his book, we have posted our journeys here and Renee shared her's in image/film.
Regardless of how I feel her story was handled or what she was told, we see what she writes here and how she shared her story through film and images. That worked for her....
Thank you all for keeping things on track, for being respectful, even if we agree or disagree with how her story (or the content) has been shared with others in the community.
Phyl
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Phyl,
Hello!
Thank you for reminding us of the respectful part.
We are all suppose to be here to share and not judge.
Renee
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FYI, I just looked up the video on youtube again, it is about the sixth one if you go to www.youtube.com, and search for "acoustic neuroma". It now has the following comment added at the end by Renee:
"AN IMPORTANT NOTE REGARDING THIS FILM:
My AN situation was urgent due to the location, size and life-threatening symptoms. Acoustic neuromas are difficult to predict. It is not typical to receive news of possible death due to the tumor,as I was intially told. Symptoms continued to manifest at an alarming rate that landed me in the ER and made surgery impairative. Please seek medical advice through a SPECIALIST dealing with AN. Best of health and life!"
Thank you for that, Renee.
The fact is that while most AN's are not life threatening, sometimes they are. There have been other posts in this forum where ANer's were complaining that others around them didn't take the AN diagnose seriously enough. Once people hear that it is not malignant, people sometimes think it is like having a wart removed - no big deal. It is the potential for an AN to become life threatening that leads most of us to get treatment for them in the first place, although we are of course also interested in preserving nerve functions as much as possible, and wish we could lose the tinnitus as well.
It is really unfortunate that in several cases, children have overheard discussion of morbidity, and I feel for those who have had this happen. I am glad this thread got started, and that those stories have been brought together here. I don't think there is a simple answer to the question of what information should be out in the public on ANs. We don't really want everyone to think that ANs are no big deal, but we don't want everyone to think that every AN is life threatening either. The only real answer is to get enough information out there to show people that ANs span a wide range of symptoms and severity, and that no one case is typical.
I know that the topic of this thread can be harder to deal with than some topics, and I appreciate the post from Phyl on maintaining respect for all points of view. As Renee said, we are not here to judge, but to share and discuss, and to struggle with this difficult question. I really appreciate seeing all the contributions, and I hope it can continue.
Steve
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Hi,
While I was not directly informed by my doctors that I didn't have long to live, it certainly felt that I didn't. Incidentally, as I was being briefed by my neurotlogist prior to surgery, I asked him myself what would happen if I let this go on longer. He replied, "You'd probably die". I went as far as you could go with AN. Also, my paternal grandfather died from a non-cancerous brain tumor in 1941.
I can relate to most of Renee's story and find it inspirational. By expressing herself and telling her story, Renee has provided a service for others in a world or on a subject where there really isn't much media available for people looking for answers and information by which to gauge the outcome of their own situations.
Paul
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Hi sgerrard,
Horray! And thanks for posting !
Patti
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I'd like to share something that may help others to understand the comments made regarding "2 weeks to live" To many it must seem like a pretty far fetch comment, especially for a doctor to say. How could he/she be so irresponsible?
After all AN's are very treatable, so how could such a remark be made and be in balance with what we know to be a very treatable tumor. I am not a medical professional of any type, but we also heard very similar words on the day of discovery with a shorter time frame to live being given. You see like Renee and other's on this list my husband had a giant AN. Due to size of the tumor and location his ventricals were blocked, resulting in hydrocephalus which was advanced at the time of discovery. If death had occurred it would of been from the hydrocephalus caused by the AN. When the tumors are very large like Renee's, Paul's and Chet's then it can become life threatening. The statement of 2 weeks to live is a very real part of Renee's AN journey, just as it was for us. It wasn't said out of being callous or irresponsible, it was the truth as it applied to the situation we were in at the time.
Having shared this. I would also stress to the readers of this post that the above cases are the exceptions and very rare. Most tumors are found at a much smaller size resulting in more choices and much better outcomes. I shared the above with the hopes that readers could better understand.
respectfully and with hugs
Raydean
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Raydean,
Thanks for your posting. Yes.. the big tumors..In order to humor my self I say "Of course I would have chosen to be one the biggest so I could see what I can get through". reframing things in this manner has seemed to help me :)
My problem, I think, had to do with the tumor being stuck to the brain stem. Not only did I loose vision, but I actually saw vivid colors (geometrical shapes) for several hours.. no one really knows why.. my brain was going through some freak out process.
Is your husband okay now?? I am sorry that you, too, went through such an ordeal. And I thank you for reminding us all, that all situations are unique. Not only did I have the "low percentage huge tumor" but I also ended up with the "low percentage paralysis". It does happen often, but to hide it really serves no one. this is probably why I even got chosen for the film festival where most films get made out of extraordinary situations. Us ANers are troopers!
Lots of love and continued healing wishes to you. I hope that you have been able to find peace, having gone through all of this,
Renee
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Hi,
Forgot to say thank you to Renee for adding the statement to your video! I think you probably eased a few confused and scared minds.
Patti
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Renee,
You are a source of inspiration to me! Not everybody can live well after facial nerve paralysis.I know I would have hidden in my basement and backyard had my facial nerve been paralyzed! Thanks for coming out with it. I am not afraid of it as much. On you it honestly does not look as bad!
Could you please talk about paralysis and what are the figures for it? What did you do to resolve it? Thanls,
Eve
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Patti
Oh yes, of course! Truly, well.. i did not know that more people would see it than at the film fest more than two years ago. but i am grateful to have come here and realized that there are ANers out there that would of course also want to support people in healing. All in all, i appreciate the co-creation of this newly added comment- though it was my life, which I can not change teh drama of it- I can still avoid unnecassary fear for others, which was opposite of my intention. So thank you all of coming to a place of understanding and respect. I do see my reflection in many many women on this site. You being one of them, Patti. Thanks for supporting a peaceful movement.
Renee
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Renee
You couldn't have gotten two better surgeons, and it was cool to see "my guys" in the video. I was able to get to them when my tumor was relatively small and my face was totally unfazed, thanks to their skill and expertize at peeling my AN off my facial nerve. However I did come out of it with chonic migraines which I suffer from to this day. We all end up with something don't we?
Peace,
Capt Deb 8)