ANA Discussion Forum
AN Community => AN Community => Topic started by: Pooter on January 22, 2009, 03:59:41 pm
-
Everyone,
I've finally gotten around to posting my story to a blog. Thanks to Debbi's help in editing, I've finally gotten it done. It's somewhat of a long read, but it takes you through my journey from about diagnosis, surgery, and recovery. I welcome all comments. The address: http://briansbrainbooger.blogspot.com/ (http://briansbrainbooger.blogspot.com/)
Regards,
Brian
-
Brian, great job on laying out your story. I enjoyed reading it. I can relate to a lot of what you and your familly went through. Thanks for sharing.
Patrick
-
Pooter -
haven't had time to check it out - will do so later - just wanted to say I love the title!
Quite a tongue twister though ;)
Jan
-
Haha.. I'm glad you like it! It's part of the reason that I picked it. It may be a tongue twister, but I bet you'll never forget it! :)
Patrick, thanks for the kind words. I hope that someone will get something useful out of it. My road was less than easy, at least to me, but I've managed to come out relatively unscathed thank God (with the exception of my scar which I proudly show off with short hair). Time will tell if it's actually useful to someone.
Regards,
Brian
-
YAY my Pooter! Looks great from initial scan ... will read in its entirety later.... good for you for keeping one! I tried... I failed....
xo
Phyl
-
I think it is great - Jenni sounds like one very nice wife!
I like to read the stories post-surgery. As I walk this path, I appreciate the reality bite of the surgery and recovery. It is so far from my current reality that it is good to keep it in check. It seems on paper that brain surgery, 1 day in ICU and home 5 days later ... doesn't sound so bad. The recovery, however, is so much slower.
In retrospect, I am so happy with my ENT. Pre-MRI, he went through the most likely options - nothing, Meniere's or unlikely but possible an Acoustic Neuroma (and the whole run down that it is typically benign). I researched the crap out of it between then and the MRI, and so was very well versed when he said small AN. (Heck, I had already posted 5 or so times here!!!!)
I agree this board is a tremendous help as we all face the decision that is right for us.
Congrats on the blog ... so do you plan to keep it up? (I am a blogger ... but very little is about ANs, and is mainly about my kidlets so likely bore the crap out of any sane soul!)
-
I think it is great - Jenni sounds like one very nice wife!
I like to read the stories post-surgery. As I walk this path, I appreciate the reality bite of the surgery and recovery. It is so far from my current reality that it is good to keep it in check. It seems on paper that brain surgery, 1 day in ICU and home 5 days later ... doesn't sound so bad. The recovery, however, is so much slower.
In retrospect, I am so happy with my ENT. Pre-MRI, he went through the most likely options - nothing, Meniere's or unlikely but possible an Acoustic Neuroma (and the whole run down that it is typically benign). I researched the crap out of it between then and the MRI, and so was very well versed when he said small AN. (Heck, I had already posted 5 or so times here!!!!)
I agree this board is a tremendous help as we all face the decision that is right for us.
Congrats on the blog ... so do you plan to keep it up? (I am a blogger ... but very little is about ANs, and is mainly about my kidlets so likely bore the crap out of any sane soul!)
Jenni's been great. I kind of like her a little bit.. ;) As for the blog; I'll probably add some here and there. For the most part I wanted to post my journey out there for people who've just been diagnosed to get a dose of reality. Not all surgeries end with on-going complications, surgeries don't end in death, you can have a normal, happy life after surgery.. I wanted them to be able to read about while sometimes being painfully slow, recovery isn't the end of "normal" life.. but, the beginning.
Thanks all who have responded.. Hopefully what I've done is helpful to someone along the way..
Regards,
Brian
-
Brian -
I really enjoyed reading your blog. I came to the forum after your surgery and never knew your whole story -- all I can say is wow you've come a long way! I always knew Jenni was special from the way you write about her but she is even more special than I thought, you are a lucky man.
Wishing you continued good healing,
Wendy
-
Hi Brian,
thanks for sharing your story, I'm a newbie and still on the watch and wait, and still learning.
thanks again
LisaP ;D
-
Everyone,
I've finally gotten around to posting my story to a blog. Thanks to Debbi's help in editing, I've finally gotten it done. It's somewhat of a long read, but it takes you through my journey from about diagnosis, surgery, and recovery. I welcome all comments. The address: http://briansbrainbooger.blogspot.com/ (http://briansbrainbooger.blogspot.com/)
Regards,
Brian
Pooter, I am new to this. I read your story and it brought back so many memories, good & bad...I am jealous that I didn't get a cap :D You did a great job in writing your story. I am glad you are doing so good. Jenni is a godsent as my husband was for me 20yrs ago. May we stay in touch and share our experience. Many blessings to you and your family...
Debbie Lyvers
-
Thanks Wendy, LisaP, and Debbie! I'm glad you each got something out of it. Jenni was a very big part of my recovery (and my life) and she is fairly prominent in my story for that reason. I guess that goes to show you that no matter what part of the journey you're on, you can get something out of it.. that's what I was after.
I've had one request that I post a more recent picture to show the latest progress in my facial weakness. I think it's a decent idea, but what does everyone else think? Does it belong there?
Regards,
Brian
-
I've had one request that I post a more recent picture to show the latest progress in my facial weakness. I think it's a decent idea, but what does everyone else think? Does it belong there?
Brian -
I vote yes. I also think you should post the picture here so those who don't access your blog can see it.
In fact, if you can post the new picture to the old thread it would be nice; that way we can see where you "were" and where you "are" all in the same place 8)
Jan
-
Yes, please put more pictures of yourself on the Blog so we can see the difference.
thanks
LisaP
-
Brian:
I read your blog and - I'm impressed. Good job! Informative and concise. Your heartfelt appreciation for your wife is both poignant and affecting - as well as deserved. I feel the same way about my Tina. :)
Jim
-
Brian:
I read your blog and - I'm impressed. Good job! Informative and concise. Your heartfelt appreciation for your wife is both poignant and affecting - as well as deserved. I feel the same way about my Tina. :)
Jim
Heh.. Thanks! "Concise" is not really the word I expected from you or anyone. If anything, I felt it was kinda long-winded. I guess I've been through alot so that begs for a longer story, but I guess I never expected that word.
Thanks for the kind words.
Regards,
Brian
-
Brian~
I'm going to get to this blog - I REALLY want to read it - but I need more than a sec here & there to sit down & give it some time. I didn't want you to think I didn't care!!
K
-
*sniff*cry*sniff* It's okay. Really.. *sniff*cry*sniff* ;)
Brian
-
Thanks, Cheri! I'm glad you liked it. Looking back on it now, there are things that I could change, but I think I'll leave it as is for now. It's an imperfect story about an imperfect person going through an imperfect ordeal. What can be better than that? ;)
Thanks again!
Brian
-
Over at the hemifacial spasm headquarters, members are encouraged to keep an MVD diary to help other HFS patients in their decision-making. Mine turned out very long and detailed because I wanted people to be informed about the complications I had. Complications are less common for HFS surgery than for ANA surgery, but they still happen. I also wanted people to get a feel for what they can do in Detroit, where I chose to have my surgery. I also put in a good word for this site, which is a great source of information for single sided deafness and facial paralyis, the two most common side effects for MVD surgeries.
I think the more information that is out there, the better. Good job, pooter!
Sara
-
Thanks for the kind words Cheri and Sara.. So long as it's helpful for someone embarking on this wonderful journey (AHEM), then it's served it's purpose.. I am still contemplating adding to the blog, but not sure what to write.. I could tell everyone the intimate details of me scratching my nose, but that's not real fun.. Heh. I'll figure something out.
Cheri, if it's any consolation, then many people go through those same emotions and are merely looking for help in the fog of those emotions and validation that those emotions are "normal". Writing a story about your journey leaving in all of the emotional inpact could do just that for someone. Again, just a thought. ;)
Regards,
Brian
-
There was a question posed on the HFS e-mail list from a person wanting information about acoustic neuromas, and in specific about finding a doctor, because her nephew had just been diagnosed. I was able to point her to this site.
If that is the only good that comes from my hanging around this site -- and believe me, it's not -- then it's reason enough.
Besides, I'm now an expert on TWO rare neurological disorders.
Sara
-
Brillian, Brian! And, yes, I agree with the suggestion of more pictures. And, yes, please update from time to time. I still update mine about weekly - I guess I look at it as sort of a journal or diary. It's a nice place to talk through things, laugh, whine, whatever. I've bookmarked yours and also added it to my blog as a link. Hey, you're my surgery buddy after all!
Debbi