Renee's video

[Jim Scott]

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

[Windsong]

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

[pattibobatti]

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

[Battyp]

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

[yardtick]

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

[pattibobatti]

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

[Windsong]

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

[reneeairya]

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

[satman]

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.

[ppearl214]

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

[reneeairya]

Phyl,

Hello!

Thank you for reminding us of the respectful part.
We are all suppose to be here to share and not judge.

Renee

[sgerrard]

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

[Crazycat]

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

[pattibobatti]

Hi sgerrard,

Horray! And thanks for posting !

Patti

[Raydean]

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