ANA Discussion Forum
General Category => AN Issues => Topic started by: reg on March 17, 2009, 06:09:04 pm
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hi again gang iam a new person to this discussion board i replied earlier to moe who wrote about his experiences, let me tell you'all a little about me and my ordeal. well in nov 06 i was diagnosed with an acoustic neuroma measuring about 3 cmm, i opted to have it removed surgical with the blessing of my physcians (both neurologist, one specializing in skull based surgery),i had it removed in dec 06. my life hasnt been the same since. iam so glad i found other people who know what iam talking about when i say (it just doesnt feel normal). ive experienced vision problems, balance issues, loss of hearong, nerve damage and a host of other ailments not to mention iam only using one hand to blog because one side is still uncontrollable. but who's complaining i've got my life and i think iam getting better slowly but surely. it just good to finally talk to people who feel what i feel. i'll get back later iam getting a little tired now
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Welcome!
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So terribly sorry you are having so much trouble. Unfortunately, no one knows exactly what will happen after treatment. It's rather a moot point now to know how experienced a team you had. Having a highly experienced surgeon who has done many, many AN surgeries is highly desirable. But, that's water under the bridge for you, so now it's finding the right doctors to help you cope with the after effects of surgery. I presume you have had physical therapy by now. There is also vestibular therapy available. I do hope somebody can help you, because you need not settle with living with so many problems. I do hope something can be done to help you.
Take care,
Sue in Vancouver USa
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Hi Reg,
When you are able, tell us a little more about yourself. Do you have family with you? It does sound like you have not been having a good time! We are here to listen and support you however we can. There are a lot of really wonderful, caring people on this forum. Stay in touch as you are able. We want to know how you are doing and how you are coping.
Priscilla
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Hi Reg,
Welcome -- as you have discovered this is a wonderful group with caring, knowledgable and compassionalte people. Please keep us updated on your progress, or even just come here to vent and join in the occasional fun that takes place here.
Wendy
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Welcome reg, I have to ask was your AN 3cm or 3mm, because there is about 1 1/8" difference. It sounds like you have had a tough two years since surgery. Here is the right place to ask question and get help, alot of people with alot of experience.
Dan in Germany
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Welcome Reg
You are not alone .. We understand. Sine my surgery I have had many friends and family say "Otis so nice to see you back to normal" I keep thinking are you crazy I am not back to normal, I never will be the same. I had a brain tumour that left me deaf, temp facial paralysis... Oh I could go on and on but my point is that only others who have gone through this can truly understand. Certainly there are more empathic and caring people than others.
Michelle ;D
We are a new normal, and that takes some getting used to. Phyl started a good thread - mourning the old you.
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Welcome Reg,
You have found a group of people who truly do know what you are experiencing. I have a question about your arm that is out of control. Do the doctors know why? I had a very weak right arm after the surgery and couldn't write. It is now four months later, and it is much better, but still not normal. I wrote my abc's daily for a long time, and typed very slowly with a lot of corrections. I still have little out of control jerks at times when writing or typing. The doctors also seem a bit baffled by the arm, which it sounds like few of us experience. It could have been from brain stem trauma, or I've wondered if I had a mini-stroke. I'm curious if they had a sound reason for you.
Some days I think I'm doing pretty well and just kind of push through the pain. But other days I'm back to severe head pain. I am seeing a headache neurologist and trying some new things. Hopefully one will work. But I agree with everyone - it is a new definition of normal!!
I also remind myself that we are all very fortunate to be alive!!
Samantha
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Welcome! :)
DHM
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Reg~
I wrote on your other post - but WELCOME here too! ;D
Salamander~
I did have a stroke and had to COMPLETELY relearn how to use my right side again. However, it was MANY months and some intensive therapy! I write back with my right hand on paper but when I teach and use the board, I use my left. I also mainly eat now with my left - except I have noticed that for some reason, I usually eat desserts with my right! Go figure!???
K ;D
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Hi, Reg - and welcome.
I'm sorry you had to deal with an AN and, worse yet, had some daunting problems following your surgery, but I'm pleased that you found this site and these forums. As you well know, just about all of the folks here (me included) have or had an acoustic neuroma. While our individual experiences vary widely, our collective experience can be useful in helping others find coping mechanisms. Please know that you have friends here. Friends that not only empathize with your situation (and may even share the same challenges) but really want to help. We're not doctors and can't offer medical advice but, out of necessity, we've learned how to cope and want to share - not only our experiences with an AN - but our advice (when asked for) and, most of all, our support for you. In short, we want to help.
That stated, I can understand the fact that you may not be able to post frequently or send lengthy posts. However, please try to remain in contact with us and share whatever you feel comfortable sharing. We want to learn more about you, your AN ordeal and where you are, today, in your recovery. You seem to retain a positive attitude, which I believe is crucial to accomplishing a satisfactory recovery from AN surgery. Hold on to that outlook and please allow us to help you in whatever way we possibly can.
Jim
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welcome home reg, dont know what i would do without these folks,welcome.
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Satman Super Eight!
We have not heard from you in ages!
I missed you. ;)
Glad to read your post here... remember back when we were newbies too? :-\ :D
Reg there are some great people here... Satman is one of my super heroes ... “Quicker than a satellite beam ... faster than a speeding bullet... it is Satman Super 8!"
Actually I have a few other ANA super heroes... I hope you get to meet them too.
DHM
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Welcome to this supportive forum. As you will see, it is so enjoyable and comforting to see responses to your posts. I enjoy "getting away" in my AN cyberspace!
Everyone's symptoms post op are so varied and unique. I'm still reading and learning that I am NOT alone, I am NOT the same person I was before my AN surgery. I try to explain this to family, but I look the same (except for left sided facial paralysis) so they don't get it........Going on a road trip is NOT my idea of fun. The sound of the car makes the tinnitus higher, and my deaf ear is towards hubby (usually a good thing!) so I must turn to hear.
I'm kind of a hermit, so hasn't bothered me that I have to be a SOCIAL RECLUSE because of my severe tinnitus in a deaf AN ear. But if I had been a social butterfly, It would be a different story.
One day at a time, keep pluggn along and continually adjust how I live :-[ I do best outdoors where the sounds of nature mask the tinnitus. Can't wait for spring/summer.
Maureen
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Hi Reg,
Sorry you have to feel that way. Take one day at a time. That is what I am trying to tell myself. No treatment yet for myself. Need to decide at some point. Things willl get better. Always good to check with your doctors for new symptoms or unresolved issues. Take care.
Vivian
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Thanks for the hearty welcome all and yes the tumor was almost 4 cm Dan. I had a world renown skull-based surgeon and a top-notch neurologist that I had researched and had recommended to me. I just had complications including having a shunt placed in my brain cavity to relieve or drain fluids into my abdomen. I was out of it for about three weeks and was hospitalized for about seventy days, so I'm only going on what was told to me by doctors and family members but I'm better now, just still experiencing difficulties. I read there is an ANA symposium to be held in Chicago in August. I'm planning to attend. It'll be a good chance to meet others and have questions answered, also a good much-needed vacation. I'll post more, later.
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OMG, 70 days in the hospital? And out of it for 3 weeks? You were a sick puppy >:(
Hang in there. Every day is a challenge for me mentally- with the deafness/ringing. It affects how much stimulus I can handle and my thought process. I think my memory is worse, but that may be age.'
Yea, it will affect my life forever.
I love to vent and it's important to do that. Guys have a tendency to hold their emotions in. Let us know if we can give you any advice on coping with your specific symptoms.
Maureen