ANA Discussion Forum
General Category => Inquiries => Topic started by: Twindad on June 14, 2011, 08:01:56 pm
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Well boys and girls, here I am. Recent widowed dad of twins with a 3.5cm ping pong ball on the left side. Never even heard of a AN until the MRI. Hearing is 3/4 gone already in addition to a numb face and nose. They tell me due to the placement and pressure on the brain stem that this thing needs to be harvested ASAP. Surgery scheduled in ten days. The only good thing that has come out of this so far is that I have proven to my brothers that there is a brain in my head after showing them the MRI. Already did all the homework on these things and from what I can tell everybody is different in one way or another. It's great to have a forum like this to communicate on. I am stressed to think I will have to sell my bike ! Been riding for over thirty years now. Is there ANY hope or people out there that still ride after one of these monsters being taken out ? If not, just tell me the way it is without any candy coating please. Guess I could use some friends that understand !
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Without issuing any guarantee in your case, I will state that I personally know someone who had AN surgery and now rides a motorcycle. In fact I think I know two. Short answer is yes.
Steve
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Thanks Steve. Maybe I should wait to sell my chromed out toy until after the surgery. She is like a third kid to me.
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Without issuing any guarantee, I will state that I personally know someone here who had AN surgery after AN radiation and still continues to waterboard/surf. Short answer.... yes.
Welcome.
Phyl
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I believe you can! Just be patient with yourself. I can't speak for motorcycles but I do ride a bicycle. After my AN surgery I did a lot of walking. Walking helps the brain and body adjust to the "New" you. When I felt pretty confident that I was walking in a pretty straight line (at least 4 to 5 weeks), I decided to give it a try. I must admit, I was a little worried when I first got on the bike but I took it slow and rode around my neighborhood (slowly). It took a little getting use to but I was not going to let this AN take control over my life. With a lot determination I kept working at it and each time, I rode a little further. Now I ride my bike as if I never had a tumor. Don't sell yourself short. After your surgery, baby your motorcycle, clean it up, maybe put on a new coat of wax, then when you are ready, just do it! Of course, have someone watching you, just in case. Think positive and don't let your AN ruin your fun! Please keep us posted. I wish you the best. Ann
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I have been riding motorcycles for 40 years...had 7 in the garage at one time. I was hit 3 times by cars, and never hurt badly. My wife begged me to quit ridding, so I gave it up. I used to ride my bicycle, but I gave that up because of my on going wonky status. I was in a club of high speed ridders in souther Arizona, and we rode at very high speeds on desert highways, and it requires quick reflexes at speeds over 100mph...not a problem back then. My reflexes are good today, but my wonkness might just cause me to leave the road, and that would ruin the whole day.
Your recover is an individual type of deal, and you may or may not be able to continue to ride your bike. I hope you can continue, but being a Dad of TWINS is far more important than having fun on a motorcycle. I'm sure your kids want to keep Dad around for a long time.
Recovery is a long term process, so don't be in a hurry. Don't sell the bike. I wish I had not sold my last one, just so I could look at it. It was a 1986 BMW R100S, and it was bullet proof...I was not!
James
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Thanks for all of the great support. I have come to terms with myself about riding a heavy cruiser in the near future. My children are at the top of my list and one woozy event going around a curve could create more problems than it is worth.
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Thanks for all of the great support. I have come to terms with myself about riding a heavy cruiser in the near future. My children are at the top of my list and one woozy event going around a curve could create more problems than it is worth.
Dad,
And when the twins were growing up, you had to stand back and have bandaids ready when they took a spill and cut up their knees. They will be there for you too, in all aspects of this "journey" and what lays ahead. Hang in there.
PHyl
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Twindad -
I'm not a doctor, nor do I play one on the Forum, but my answer is a great big YES!!!
Jan (single mother to twins born Leap Day 1996)
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Thanks for the encouragement Jan. Having teenage twins yourself you know as well as I do that we qualify for some sort of Dr. degree in psychology ! Especially with twin girls ! Oh the drama...Oh the drama !
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Oh, man! Drama times two! :o Say it isn't so ;D
One of mine (the oldest by 17 minutes) is a boy, and while he generally isn't dramatic, he has been known to give me other issues LOL
My two take turns being the "evil twin"; but hey, at least they don't typically gang up on me ;D
Sorry for the hijack, Phyl. I promise I'll be good . . .
Jan >:D
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How long was it before you got fitted with the Baha ? I am being told it is a wait and see. Did you get much vertigo after your surgery ? I am at the point now I am not sure it could get any worse. Almost went down on the escalator in the mall this evening.
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I only had slight vertigo post op and it didn't last long. My frustration with being SSD was the main reason I opted for a BAHA. I found being SSD very depressing; it had a huge impact on my life and the lives of my children (who incidentally were just as frustrated as I was).
My neurotologist told me I could try the BAHA demo as soon as my head was "healed" post op. I'm not really sure what "healed" means - kind of a subjective term - but I had my surgery 5/31 and tried the demo in mid-September. I was instantly enamored - and remain so to this day ;D The BAHA implant is one of the best things I've ever done; hands down.
The day I tried the demo, my doc had me plug my "good" ear with my finger and then he sat across the exam room from me and talked in a normal tone of voice. I could hear every word he said. It was amazing!
I decided right then and there that I wanted the surgery. He told me the first step was to approach my insurance company about coverage and said that usually takes 4-6 weeks. Long story short, my insurance company dragged their feet, lost my request a few times, etc., etc, etc., and by the time we finally got it all straighted out it was the end of February :o
I had my implant surgery on 3/4/08 and 90 days later (calcification period) I started wearing a Cochlear Divino. I upgraded to a BP100 in April 2010.
Jan
PS - I'd say stay out of the mall with your vertigo, but you did mention having girls and I realize how impossible staying out of the mall is; so I'll just say be careful on escalators. Use the handrails.
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Jan,
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Jan,
Thanks for the info. I hope to follow in your path with the implant. Sounds like you doctor is very supportive. So far my surgical team has been informative and very caring. I still have a long road to travel. Next week will reveal the outcome of my surgery. The vertigo I can handle at this stage, it's the massive headaches that are the pits ! The headaches get so bad sometimes it's almost unbearable !
Twin girls at a mall can rack up a shopping bill almost as much as a AN surgical bill !... Oh well, I love them and it's only money ! :D
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I had my BAHA done when I had my translab surgery done...two in one. I am a year and 3 months post surgery, and I am still wonky, but I don't have full scale vertigo. It is something I have become used to, and it does not interfere with me having a happy and full life style. I gave up the motorcycle and bike, but I still have my boat, still can lift weights everyday, and life is much better following the surgery than it was prior to the surgery. It is a slow recovery, so do not get discouraged...you have a great life ahead of you!
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Thanks for the words of wisdom James. I am a very determined person that will not let something like this push me down. I will miss the bike and have considered another flats boat. My doctor tells me that because of the size of my AN my body may have been overcompensating for a long time and there may not be any balance issues. Guess I will find out in 48 hours. Maybe I can have them save the tumor and I could use it as a bobber when I go out fishing on my new boat. :D
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I have been riding for over 40 years. Life without toys would life without boys. Saying that, I have been lurking on the forums for 6 mos since I was diagnosed with a 12 x 6 x4 mm's an. MC's have been a passion for me and to think of life without riding would be a real adjustment for me. I have gone through all the emotions and just came back from the ANA Symposium in Cincy. I am convinced there is total and complete healing after an treatment. This part for me is faith based and mentally accepting whatever the outcome I will be a better person because of it. I am WW as per local Dr and the recommendations from the symposium. Do not sell the bike, look at it as a challenge and a goal to be back in the saddle soon and safely riding wherever the road leads. I realize your surgery is in a couple of days and wll keep you in my prayers. Keep the shiny side up and the rubber side down.
Skip
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One of the ridders in my club ran into a tree in the New Mexico mountains and broke his back, and he cannot walk, but he can sit on a motorcycle. He added a side car to a BMW, and it has a hand shifter and both brakes work off the handlebars. If you can drive a car safely, but your are still some-what wonky, a sidecar might be the answer, and CanAm makes a nice trike now...all good options.
I would be looking at one of these, but I promised my wife that motorcycles are not part of my life any more. I really miss all the fun, and I hope both of you will have a very good outcome from your treatment and can continue to ride.
James
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Hey TwinDad,
I've never been involved with motor bikes, but I can understand the emotion.
First, good luck with the surgery tomorrow.
Second, take it one step at a time, it's a long road to healing, be patient and
be grateful with what you have. Post AN surgery is challenging, but we have to face
life with what it gives us.
Don't be afraid to vent your frustrations on this site, you have plenty of company.
God Bless !
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Thanks for all of the help on the motorcycle topic. After meeting with three doctors today I got another reality check. >:( I go in for the golf ball harvesting at 4:30 in the morning and the MRI shows this thing attached to nerves that concern them. So the bike goes and I find another man sport thing to do. ??? I'll start out with some nurse flirting in ICU and maybe move up to badminton or something.
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Okay, just what nerves is your golf ball attached to?
Most of us had an AN that was attached to 1 or more of the 3 following nerves: balance, hearing, facial. If these are the nerves in question, I wouldn't worry about the motorcycle.
There are lots of stories on the Forum from athletes - marathons (both running and cycling), standup paddleboarding, etc.,
I'm not a doctor, but personally I wouldn't sweat it. Never say never!
Jan
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My BF will probably be going for surgery and he has flat out refused to get rid of the bike. He says he will get a sidecar or trike it out for the stability if he needs it. Either might be an option for you.
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>:D I, too am an avid rider (harley) also considered a child lol seriously thru replied earlier this yr bout the joy of gettin on my bicycle n riding it mc next so it can b done lotsa walking n rehab n keep the faith reg
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Hi TwinDad:
My husband had a 3cm AN removed which was kissing his brain stem a year ago by Dr. Heilmann Tufts Boston and he has been riding his motorcycle this summer and is thrilled to be on it. He did not have any facial paralysis, balance issues or headaches, does have SSD and a walking gait issue. Everyone's healing process is unique and he did have to take some time before he could ride but hold out on the sale of your motorcycle just yet. Have patience with the recovery, you will be in my thoughts and prayers!!
Karen