ANA Discussion Forum
General Category => AN Issues => Topic started by: Ryan on April 11, 2008, 11:00:24 pm
-
I remember visiting this forum almost 2 years ago, the most desperate and helpless I've ever been. What's Acoustic Neuroma? This thing inside the skull, that cannot be touched by the hand...This thing that grows within perhaps the most powerful skeletal structure on the human body? Why?
4.3 centimeters at it's widest measurement (big for an AN tumor), and displacing the brain stem. I inspect every layer of the MRI pictures and see a very clear picture of what is going on "within." The site is horrifying to say the least. It is unmistakable. You can't mistake something that big!
What to do? Radiosurgery? Physical surgery? Wait?
I know many people coming to this forum are feeling what I "felt." But it may be surprising to you that it was not me with the tumor. It was my father...
My father broke down in tears in front of me when he told me the results of his MRI. As if he was ashamed. As if there was something about his affliction that he felt he could not admit without fear that his son would see him from a very different perspective. Maybe a perspective of weakness...I could see it in his eyes. As I hugged him, I felt his fear in my embrace. His shoulders shaking and his tears dropping to the carpet like rain. It was very scary to me. But I vowed that I'd learn everything I could about his condition. And I did...
This forum was a very large part of my "education" on Acoustic Neuroma. I was here every day. I missed a lot of work through my research. It was a mysterious, long and sometimes very depressing period of time, but I learned everything I needed to know about AN to help however I could.
My father opted for surgery. Specifically, he opted for endoscopic surgery from the Skull Base Institute. I am thinking many of you are wondering if he's still alive. My father is in fact still alive and doing much better than I had expected (based on what I learned about AN). He was told by many surgeons that he might not ever walk again, but he does. They told him he'd need to take 5-6 months off work (he owns a business). He was back at the office within 3 weeks.
Now I'm not saying everyone will have the same experience my father had, but please ease your worries a bit. Whatever you choose to do with your situation, remain calm. If you're here on behalf of someone with AN, tell them to remain calm. It's truly not as bad as some stories may imply. I experienced a very rough period of mental stress and physical symptoms through my reaction to my father's condition. It was unwarranted stress.
He recently got his follow up MRI (I waited to post this until I could be sure), and was told that everything is fine. This is a great relief for me, especially given the size of his tumor. He is 55 and his health is exceptional. I would urge people to recognize that most successful stories don't get posted within these message boards, since people put the experience past them. So consider that a very good percentage of people with AN tumors have a good recovery.
I am not saying that my father is in the clear, but his outcome was much better than I'd ever imagined it would be.
My father did experience significant hearing loss in his right ear, but has learned to cope rather well. He does have headaches in certain weather (primarily stormy weather). He also has tinnitus, however he does not speak of it much anymore - so I can assume it has become "white noise" to him. He has the occasional brain fart (especially when writing with a pen), but his neurological status is very good. And, thank goodness, is very well-equipped with his sense of humor (the ultimate test). He is also experiencing a renewed appreciation for things (life and family), which is a very welcomed "side-effect".
I hope that my story has helped all who stumble into this world of confusion and worry. It really is not all that bad. There can actually be a lot of good that comes of it...
- Ryan
-
Ryan -
this is a great story. And the twist about the AN belonging to your father, not to you, really took me by surprise.
Your father is lucky to have a son like you to help him get through his "AN journey".
It sounds like he is going extremely well and that is something to be celebrated.
Thanks for posting,
Jan
-
Wonderful story, Ryan. What many of us have to remember is that this is just as terrifying for those who love us as it is to us - maybe even more so. Thank you for sharing this with all of us - and give your dad a big hug.
Debbi
-
Ryan~
What a great story - thanks for sharing it! I am glad that your dad is doing so well. I do think that you can read about a lot of people that have it really bad, but their are so many POSITIVE stories here, humor, and people just wanting to encourage others. I know that is why I am here - I am a 12 year "postie" (& I will say that it is nice to have friends that truly empathize with what I have gone thru or feel), but I CERTAINLY do not dwell on the AN. I have a VERY full life - a husband and 3 beautiful daughters that keep me running! My message is that there is life AFTER acoustic nueromas!
Thanks for, yet, another encouraging story!
K
-
Ryan:
Thanks for a riveting account of your dad's AN experience from your point of view, which is somewhat refreshing. Your story was well written and certainly one we can all relate to at some level. The 'happy ending' makes it even more significant.
I was 63 when my AN was discovered. My wife was stalwart, if shaken, and my son followed my lead, which was basically that of a cautious optimist. I fully expected to come through this O.K., so my son (26 at the time) shared my expectation and, although concerned, he wasn't overcome with anxiety. This also helped my wife cope. I was relieved that the tumor wasn't malignant but was operable, even though large (4.5 cm and, as so many AN's seem to, was pressing on my brainstem). I also trusted, in this order, God - and my neurosurgeon. My (retrosigmoid) surgery went well with no real complications and my follow-up FSR was also uneventful. My recovery was rapid (driving again two week post-op, with my surgeon's approval) and both treatments were ultimately successful. Today, almost two years after my initial diagnosis, I'm pretty much back to where I was before my AN manifested itself, with only a few very minor 'reminders' of my AN experience and possibly a bit less stamina than I had before, although my age (65) may be playing a part in that. :(
I remain an active member of these message boards for the reason you referred to in your post. Most AN patients who have successful outcomes to treatment put the experience behind them and stop posting once their crisis is passed and/or they feel they have no further need of an acoustic neuroma support site and it's forums where folks ask questions, relate their symptoms, problems and experiences to other AN patients. I can understand that. I used to own a Mustang but once I sold it, I stopped posting on message boards specific to Mustang owners. However, I'm grateful to this site for the information and support I received when I first joined it, almost two years ago. I see the posts filled with complaints, frustrations and anxiety as well as the posts from sometimes confused and frightened, newly diagnosed AN patients, their spouse or family and I want to do what little I can to help them, if possible. Sometimes, I can't. I can't cure headaches, make anyone's facial nerves regenerate or otherwise solve physical problems, and I know it. However, being an active participant on these boards does keep me grounded, humble and grateful. I'm one of the luckier AN patients, as is your dad. I believe that sharing my positive 'AN story', as you have about your dad, is beneficial to others, especially 'newbies' (the newly diagnosed) and so I remain here awhile longer, doing what I can to encourage others who may be immersed in fear, anxiety and frustration when confronted with a Brain Tumor. It certainly is scary. Maybe I can help. At least I can try. That you re-visited the site to offer your dad's positive experience is commendable.
Thanks again for your heartening post, Ryan and the very best to you and your father. :)
Jim
-
Jim~
As always, very well stated!!
K
-
Thanks Jim,
I always look forward to reading your post. You have a gentle encouraging way and you always seem to calm me down. Maybe your life experiences have something to do with it. Your wife and son are a wonderful strength for you and your ability to write so openly about them is a strength for me and I hope others. Men also see things in a different light than women. I've always been the doer, the go getter and the one to keep it all together. I haven't been too successful at that lately. My family now does more than I do around the house, mind you I do work full time outside the home. It is hard to step back and let the reigns slide.
I do suffer from the headaches, the nasty sinus problems, the numbness and pulling on my left side of my face anxiety and to some extent depression . I know I need the nerve graft, but I am scared and I am normally very good at communicating with my husband and sons, but some reason I'm very afraid to voice my fears to them. They think I'm addicted to this forum. In a sense I am. I've read the good, the bad the ugly and the real success stories. Reading your posts, laughing with Capt Deb, being encouraged by Mazey and watching Nancy and now Kay's transformation with the tendon transfer has given me a real sense of hope. Having Phyl pass the popcorn and a beverage of choice just makes my battle a little easier.
It amazes me that we have people from all over the world here posting. Lorenzo in Ireland, Michella in Italy, Laz in Australia and now Shiva in India, not to mention all of the people in the UK, The US and my home Canada. This forum is a true community. We worry about each other and encourage each other on. We have people from every walk of life and we know the utter helplessness each newbie feels. Not all of lives experiences are good, but being able to share, complain, praise, encourage and understand, cry when needed and laugh for joy when a battle has been won makes this place so wonderful and addictive.
Anne Marie
P.S. it's the steriods.........motor fingers ;D
-
Thank you Ryan - I needed this story today. :)
Kimberly
-
Ryan,
Your story is heart-warming. You eloquently captured the heart and the emotion of the story behind the AN diagnosis. Thank you for coming back to post it.
And congrats on the follow up results.
Kate
-
I remember visiting this forum almost 2 years ago, the most desperate and helpless I've ever been. What's Acoustic Neuroma? This thing inside the skull, that cannot be touched by the hand...This thing that grows within perhaps the most powerful skeletal structure on the human body? Why?
4.3 centimeters at it's widest measurement (big for an AN tumor), and displacing the brain stem. I inspect every layer of the MRI pictures and see a very clear picture of what is going on "within." The site is horrifying to say the least. It is unmistakable. You can't mistake something that big!
What to do? Radiosurgery? Physical surgery? Wait?
I know many people coming to this forum are feeling what I "felt." But it may be surprising to you that it was not me with the tumor. It was my father...
My father broke down in tears in front of me when he told me the results of his MRI. As if he was ashamed. As if there was something about his affliction that he felt he could not admit without fear that his son would see him from a very different perspective. Maybe a perspective of weakness...I could see it in his eyes. As I hugged him, I felt his fear in my embrace. His shoulders shaking and his tears dropping to the carpet like rain. It was very scary to me. But I vowed that I'd learn everything I could about his condition. And I did...
This forum was a very large part of my "education" on Acoustic Neuroma. I was here every day. I missed a lot of work through my research. It was a mysterious, long and sometimes very depressing period of time, but I learned everything I needed to know about AN to help however I could.
My father opted for surgery. Specifically, he opted for endoscopic surgery from the Skull Base Institute. I am thinking many of you are wondering if he's still alive. My father is in fact still alive and doing much better than I had expected (based on what I learned about AN). He was told by many surgeons that he might not ever walk again, but he does. They told him he'd need to take 5-6 months off work (he owns a business). He was back at the office within 3 weeks.
Now I'm not saying everyone will have the same experience my father had, but please ease your worries a bit. Whatever you choose to do with your situation, remain calm. If you're here on behalf of someone with AN, tell them to remain calm. It's truly not as bad as some stories may imply. I experienced a very rough period of mental stress and physical symptoms through my reaction to my father's condition. It was unwarranted stress.
He recently got his follow up MRI (I waited to post this until I could be sure), and was told that everything is fine. This is a great relief for me, especially given the size of his tumor. He is 55 and his health is exceptional. I would urge people to recognize that most successful stories don't get posted within these message boards, since people put the experience past them. So consider that a very good percentage of people with AN tumors have a good recovery.
I am not saying that my father is in the clear, but his outcome was much better than I'd ever imagined it would be.
My father did experience significant hearing loss in his right ear, but has learned to cope rather well. He does have headaches in certain weather (primarily stormy weather). He also has tinnitus, however he does not speak of it much anymore - so I can assume it has become "white noise" to him. He has the occasional brain fart (especially when writing with a pen), but his neurological status is very good. And, thank goodness, is very well-equipped with his sense of humor (the ultimate test). He is also experiencing a renewed appreciation for things (life and family), which is a very welcomed "side-effect".
I hope that my story has helped all who stumble into this world of confusion and worry. It really is not all that bad. There can actually be a lot of good that comes of it...
- Ryan
===============
Ryan,
Hello there. I am researching SBI and would like to know how you found them to be overall. I would like to know more about your Dad's procedure; he is comparatively young - 55 yrs and I would like to know more about his condition today. You indicated that the doctors told him he might not walk again but he is. Why did they say he might not walk again - because of the surgery? As I go through your post, he seems to be doing well. I would be more than happy to call you if you don't mind me taking a bit of your time. Thank you....M
-
It amazes me that we have people from all over the world here posting. Lorenzo in Ireland, Michella in Italy, Laz in Australia and now Shiva in India, not to mention all of the people in the UK, The US and my home Canada. This forum is a true community. We worry about each other and encourage each other on. We have people from every walk of life and we know the utter helplessness each newbie feels. Not all of lives experiences are good, but being able to share, complain, praise, encourage and understand, cry when needed and laugh for joy when a battle has been won makes this place so wonderful and addictive.
Nicely said, motor fingers. :)
I really liked Debbi's thread on Happy Endings, which captures much of what Ryan's story brings up. Many of us experience the "renewed appreciation for things" Ryan mentioned his father has. I was impressed by the number of people who have been through serious complications that also share that sentiment. Having an AN can turn out to be almost a good thing, it would seem. Though I can't wish one on anybody, I can wish that more people could experience the benefits that can come with it.
Thanks, Ryan.
Steve
-
Many AN'ers move along with life after treatment.... but I choose not to and remain here for the exact reasons noted below... a true feeling of "community" for those with a rare condition. Nicely put, all.
Phyl
It amazes me that we have people from all over the world here posting. Lorenzo in Ireland, Michella in Italy, Laz in Australia and now Shiva in India, not to mention all of the people in the UK, The US and my home Canada. This forum is a true community. We worry about each other and encourage each other on. We have people from every walk of life and we know the utter helplessness each newbie feels. Not all of lives experiences are good, but being able to share, complain, praise, encourage and understand, cry when needed and laugh for joy when a battle has been won makes this place so wonderful and addictive.
Nicely said, motor fingers. :)
I really liked Debbi's thread on Happy Endings, which captures much of what Ryan's story brings up. Many of us experience the "renewed appreciation for things" Ryan mentioned his father has. I was impressed by the number of people who have been through serious complications that also share that sentiment. Having an AN can turn out to be almost a good thing, it would seem. Though I can't wish one on anybody, I can wish that more people could experience the benefits that can come with it.
Thanks, Ryan.
Steve
-
Ditto to comments made by Phyl and Steve...Oftentimes people move on...Others Pay it Forward. An AN in an odd way causes a person to reevaluate what is really important. At least it did in my case. It also makes you realize that "shift" (take away the "t") happens at any time and at any age.
-
Ryan,
Thank you for sharing your story. Your Dad is very lucky to have you. I wish you both continues success. I love to hear stories with your Dad's outcome.
Brenda
-
Ryan -
this is a great story. And the twist about the AN belonging to your father, not to you, really took me by surprise.
Your father is lucky to have a son like you to help him get through his "AN journey".
It sounds like he is going extremely well and that is something to be celebrated.
Thanks for posting,
=====================
=====================
jan....here i go again. i do not understand how to start a new post! i wanted to know if you or anyone heard of the alleghany hospital in pittsburg, dr. JHO (pronounced JOE) which was mentioned by i IXTA , where minimally invasive surgery techniques are used. i can't seem to get from 'mike' just now, if they have performed many, etc. etc. maybe someone will see this note and respond? monica
Jan
-
Monica -
to start a new topic (new post) go to "home".
Pick the category that most closely fits your topic - e.g. AN Community, Pre-Treatment Options, etc. - categories are listed on the left side of the screen.
Click on the category you've picked and you will see a list of all current topics under that category. Look at the right side of the screen and find the "button" that says "new topic". Click on that button and a "window" will open. Fill in the blanks (subject, text), click on post, and you're good to go :)
Good luck,
Jan
-
This is just too beautiful a story as are the replies you have gotten here- Ryan.
It is so nice to hear of another AN treatment success story that “kept moving forward� – but still took the time to come back and tell us about it.
Thank you SO much for sharing!
Now someone please hand me a tissue… :'( :) :'( :)
No no no- not popcorn Phyl ???, (with the beautiful pearly whites ;D) …. A tissue! ;) I got teary eyed (well one eye tears anyway) reading this thread - and now my popcorn is all soggy…
Daisy Head Mazy :) :'( :)
-
HI,
Thanks for your story. There is life after AN. And my son had a huge one too. There are issues but most people come out of this fine and it is not ususally life threatening. The other good news is technology just keeps getting better and better and the doc's are getting better at this too. 20 years ago there was a 40% chance of motality now it is virutually 0%.
Thanks again,
Your dad is lucky to have such a caring son.
Peace and Love.
Robyn
-
Robyn,
I had my first surgery 20 years ago. From what I remember, mortality was already lower than 40%. Now I cannot believe what I survived! Where did you get your figures?
Eve
-
Hi Ryan,
How are you? I've read your story. I have questions for you. Where did your dad have his surgery? Was it done by a neurosurgeon or neurotologist? did he have walking or balance problems before surgery? and did he have physical therapy after surgery? I am scheduled for surgery in about a month. I have walking problems now. In fact, I sit in a wheelchair. I am hoping that I can get rid of the wheelchair after surgery. Thank you. Greetings! Effiya.
-
Wow! I'm very pleased everyone found my experience helpful! It was very nice reading all of your posts. Jim, you seem like you'd be great to hang out with! :D I too commend everyone that sticks around to help people get through their experience. You simply can't beat that kind of help!
A few people asked about my father's procedure. I had mentioned that some docs told him he may not walk again after his surgery. Although this is probably extremely rare, it was mentioned as a possible result of his surgery. But remember, docs have to tell you these things even if it is close to impossible. I'd urge those that felt worried after reading that comment to fear not. It was simply something that worried my Dad enough for him to tell me about it.
Remember that a lot of what you read on the internet can be outdated, as several advances have been made in this realm.
My father opted for endoscopic surgery from a surgeon in Los Angeles. Their website is www.skullbaseinstitute.com . The surgeon's name is Hrayr K. Shahinian, MD (http://www.skullbaseinstitute.com/shahinian.htm).
I participated in the phone consultation with him and my Dad and was very impressed with his knowledge and reassurance that my Dad was going to be ok. The incision was very small and the scar is no longer visible on my Dad (it's covered up by his hair).
LizH, I hope the above answered your question. My Dad did have some issues with balance before the surgery, but was able to walk ok. He still has some slight balance issues, but it hasn't gotten any worse. He didn't need physical therapy after surgery, but then again he probably wouldn't admit needing it if he did. I believe his will [to be as normal as he was before getting his AN] was a tremendous help with his recovery. I sincerely believe positive mental attitude made a huge difference for him.
I was not with my Dad during his surgery (he flew out to California with my stepmom), but he sounded good on the phone after it was over. The surgery wasn't too long (6-8 hours if I remember correctly). He wasn't too fond of the trip home, mostly because he was just so exhausted (surgery does that), but he had a great attitude about everything.
Thanks to everyone that replied! You all seem like such a good group of people! :D
- Ryan
-
Thanks Ryan. I am glad to hear that your dad is doing well. LizH