ANA Discussion Forum
General Category => AN Issues => Topic started by: satman on September 12, 2007, 04:11:17 pm
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hello everybody, when i was at PT today, my therapist told me that
i would be done with therapy at the end of the month.
looks as though i will be returning to work on nov 5th.
my walking is still rough ,as i have to use a cane,but i'm starting to walk without it.
my balance is still way off in left field,but i get by.
the dizziness is fading away day by day,and I still have facial issues, still being patient on that one.
thought i might take the month of october off work ,as
i think i deserve it .
april 9th-17 1/2 hr surgery on 8 cm AN,august 1st 8 hr cranial nerve surgery . time sure does move slow when recovering.
I'm not even going to bring up the eye issues,explicit lyrics.............................................................
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I'M GLAD THINGS ARE GETTING BETTER FOR YOU. A 8CM AN, THATS WAS PRETTY BIG. I HAVEN'T HEARD OF ONE THAT LARGE. WHAT IS THE LARGEST YOU HAVE HEARD OF. TAKE CARE AND GOOD LUCK
MARK
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unfortunatley, 8 cm
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Wow, this TUMAH gets a big RED STAR!
You are quite a hero!
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Hey John: I remember when you were asking about the nerve grafts - I'm so glad you had the guts to get it done, & at the right time (earlier than later). Yes, yes, yes, take another month off - I just wish you were feeling at your best for this extended vacation (I think that was the only drawback I felt about being off from work recuperating - not the time for snorkeling, hiking, etc.... ). Well, enjoy it as much as you can - you know once you're back at work it's the 'yearly vacation' mode.
Always good thoughts, Nancy
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Hi,
So glad to know you are on the road to recovery. Our doctor said that he did an 8 CM. THat's largest I have heard of. That is a monster. You must have been in great shape to have it get that big without any symptoms. THey told us that your body adjusts to it then one day it can't adjust anymore.
The good news is they say the nerves regenerate after time. I am thinking of you.
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i had a bunch of symptoms,just ignored them.
did i ever learn my lesson!
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Hello there satman!! Been to Margaritaville lately? I used to think of Jimmy Buffet when I heard that song. Now, I
think of you!!
I don't know of too many people on here satman that ran to the doctor at the first sign of a "symptom". I ignored mine, thats for sure. Even when I had vertigo for 4 days in a row, I still figured that I had the worst flu of my life and didn't go to the dr. until the 5th day. I think I had tinnitus for at least 4 years before that!
Hang in there satman. Keep looking way back to see how far you have come. I remember your posts from when you couldn't walk at all.
Kathy in Minnesota
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hi kathy,i try to go to margaritaville every chance i can.
in Texas they really help with the heat,the mexican food also.
i remember you too, always there for support and i also hear your a buddy of a new found friend of mine.
Dallas Cowboy special comimg on,cant ignore that ! it's Miller Time
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Glad to hear I'm not the only one who ignored my symptoms. It took me 3 months to get to the ENT to see what the cause of my diminished hearing was. My first visit to the neurotologist (post MRI), he asked me how long I couldn't hear well. When I told him 3 months I thought he'd fall over.
Anyway, Satman, sounds like you're making progress!!! That's so incredible. With an AN that size, I'd say you're comparable to SuperMan.
Keep up the good work and next time you're "raising the glass", have one for me ;D
Jan
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HI,
My son Eric also ignored some symptoms. But really didn't have many until the numbness on face. Even then it took us 2 months to go to the doctor. Even the first doc he saw said to go to the ENT but it took us a while to do that too. He had no hearing loss at all. If he had that I am sure we would have caught it earlier. Even when they did an MRI I didn't think an MRI was a big deal. We were completely surprised when we got the Diagnosis. Had no idea it was coming.
You are not the only one.
:)
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hi, John:
Congratulations on your slow but steady recovery.
You really do deserve a month off (from work) that you can enjoy a bit, having gone through therapy, not to mention an 8 cm AN removal. I thought my 4.5 was large but I feel like a pipsqueak compared to you. That's O.K. I willingly cede that distinction. ;)
I also ignored symptoms, such as a steady decline in the ability to hear in one ear. Finally; intermittent, stabbing head pain on one side, a noticeable loss of equilibrium, a pronounced lack of appetite due to diminished sense of taste (I lost 30 pounds), weakness and unaccustomed lethargy combined to motivate me enough to consult with my PCP. After ruling out a suspected thyroid condition, he ordered an MRI scan, with contrast. Using my lack of appetite as a clue, he suspected and was looking for a sinus problem but the MRI found the AN, instead, prompting a personal, evening call, direct from my doctor's home phone. I was both impressed and concerned. My PCP and the neurosurgeon I eventually selected were alarmed at it's size and placement, pushing on the brainstem to the point that my brain had been pushed as far to one side of my skull as it could go. I underwent microsurgery (retrosigmoid) less than a month later. Then, three months following the surgery, FSR treatments (26) to kill the remaining tumor. So far, so good, as I note in my signature. I was fortunate not to suffer any serious complications and am doing well, now.
I regret that you've had a long road to full recovery but at least you can now see 'the light at the end of the tunnel', as it were.
I wish you continued success in your recovery and an enjoyable autumn as your 'issues' steadily improve.
Be sure to try and keep us informed of your progress.
Jim
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Hi John,
Boy, can I relate to you. I had surgery April 18th and had some tough complications. It sure is a long haul, I agree. I am still going to PT and getting better.
Congratulations on hanging tough and best wishes that you continue to recover.
Jeff
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You go Satman! And listen here sometime: http://www.radiomargaritaville.com/_listen/windows_hi.htm (http://www.radiomargaritaville.com/_listen/windows_hi.htm) Great tunes!
Capt Deb 8)
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thanks for all the replies,all of you are a very
big part of my motivation,not a single day goes by that i dont think of you guys.
i may be getting better,but still have a very long way to go,i just hope that
i can help the newbies get by all the fears and worries. i still have so far to go in fact, that i'm
watching my wife Sam install wood{laminate} floor,i think i need a beer,watching all the hard work.
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Hey Satman,
Don't forget I have met your wife and my advice is to get your little self over there and help her with that floor.
Hope you are doing good. I see that you start your job on the 5th. You will be fine....Probably not like you were, but you will be great!! Today I was up on ladders and painting a little girls room, so there.
Call me up,
Patti
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Hi NancyAnn,
I was wondering why you said it is better to have a nerve graft sooner than later. My facial nerve has to be removed with a nerve graft. I'm waiting at the moment. I have some weakness. I'm seeing the Dr again in Jan. or immediately if the weakness is more pronounced. The Dr did say that this is the tricky part knowing when to go in and do the surgery.
Anne Marie
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Wow 8CM! At first I thought that was a typo!
That must of been a long yet determined road to recovery.
Conrats to you! Must feel damn good I am sure! :D
Sam~
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Hi Anne Marie: You know, I never asked the doc why, once my facial nerve was cut, the sooner the nerve graft is done the better - I thought maybe it had to do with not letting the 'dead' nerve go too long. But the 'earlier than later' is regarding the hypoglossal anastamosis; if you have a cross nerve graft (good facial nerve to bad facial nerve), you can wait, even a few years (I was told). I don't know why that is. Hmmmm
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Hi NancyAnn,
I still have my facial nerve. There is weakness happening. I'm told they remove the nerve from the back of my right leg and graft it were my left facial nerve was. I do not know all of the medical details. I trust this Dr way more than the one I was originally referred too. Windsong lives about 1 hr from me and she suggested I get a hold of her Dr. Really a caring man. Understood my anxiety and explained all of the MRIs and the CT scan. I've got a list of quetions for my next visit.
This forum has really helped me. I felt so isolated before. If only I could get my headaches under control. I've asked the family dr for topomax, but he has to wait for the report from the specialist.
Anne Marie
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Yeah Satman, watching hard work wears me out too! I've watch me old man lay a few wood floors since my surgery--always makes me thirsty! Just take it easy and pace yourself--that's the key. Trying not to over-do it, but you still have to force that other balance system to work overtime. A fine line to learn how to walk indeed.
Be well and sail on!
Capt Deb 8)
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Hey Anne Marie: you may be getting ready for the cross nerve graft; I think what they do is harvest a nerve from another area (in your case the leg), so it will be used to attach part of the right facial nerve to the left? Not sure. If I was going to have the hypoglossal anastamosis, the doc told me he would use a nerve from my neck (that's the jump part of the 7/12 jump) to attach part of the tongue nerve(12th nerve) to the facial nerve(7th nerve). So, ask your surgeon what type of nerve graft he plans on doing. Since I'm not going to have any nerve graft, I haven't had further visits with the doc to find out exactly what would go on. I wish you all the best my friend, Nancy
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Hey satman:
Did I read an early post of yours right, that your AN was OVER 8 cm??? 8 and 3/4 cm??? I was looking through your old
posts to see if you ever had a gold weight put in your lid. Did you? The eye stuff did drive me bonkers. I feel very bad for you and anyone else that is still dealing with the dry eye. I don't have to worry about you forgetting to lube up when you go to Margaritaville, do I?
Yes, your new found friend is a good buddy of mine. She is a good one to use if you need someone to lean on. She has had just about every complication and overcame all of them.
BIG HUG from Minnesota!! Kathy
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hi Kathy,yes you read it right and i am so happy to have all that behind me.
i go the same eye doc as patti[pattiobatti]she refered methe guy she uses . man , the stories she can tell. the eye dr. says that
until my eye gets the blink reflex back the gold weight will not help.he has told me that my cornea is in great shape
so i just keep it lubed and when it starts to burn i put more in.
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So, Satman, I hate to be nosy, and I hope it's not rude of me, but I'm wondering if your AN ranks up there with the largest ever treated. I know my neurotologist's partner operated on a 5 cm AN a couple years ago, but yours was the largest one I have ever heard of. Should we be nominating you for a Guiness World Record or something? ???
Jan
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guiness sounds good ! as in beer.other than that,i dont want to be
the circus clown anymore.my friends are already putting me in the spotlight
every time we get together,you know,"watch him walk",etc,etc.
does anybody else get that kind of attention ?its quite irratating.
i could go on and on but i wont.i guess i'm going to have one of those days.
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HI satman,
I don't like it when you are sad. Some days are just like that, though. I hope you can focus on positive things today.
When I met you in the hospital, you had a wonderful way of putting everyone at ease. You were funny and personable. Maybe that is why your friends are comfortable keeping you in the spotlight. I am sure they would never want to hurt your feelings. Don't worry, I'll get 'em!!
Have a better day, John
Patti
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hi Patti,you always say the kindest things.
next time i see dr.Gupta i am going to ask him if i should go with that contact
you have been talking about,want to get his input, out of curiousity.
i will call you soon,would love to chat.
Jan,i am sorry if it seemed like i was being a smart__ _ _.
I really didnt mean to.
being irish/italian i seem to respond without thinking things through.
I truly did not mean to come off as a jerk.
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satman -
didn't take your answer as a smart-a** remark, or think you were a jerk - and I hope you didn't take my question that way either, as that was not my intention. I was just truly curious. The first time I realized your AN was 8 cm, I was floored; I thought it was a typo and you meant 8 mm. Reading your posts these past few months, I have been amazed at what you've been through and the positive attitude you consistently have. IMO, you have a whole lot to be proud of; the things you have accomplished are incredible.
Jan
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Hi satman:
I can relate to being in the spotlight too. If I had a dollar for every time I heard: CAN YOU HEAR ME NOW in the first year post op, I would have had enough money for a new car.
I have trained most of my co-workers to tell me, on your right or on your left if they are trying to get my attention. One guy just would not get it. He would always just yell louder to get my attention. I had explained to him a zillion times that I am not hard of hearing and that my good ear works great. Yelling won't help me figure out where you are. About a month ago, he did it again. I pulled him aside, told him that I had thought I would never wish an AN on anyone but he was pushing it. I told him I was seriously thinking about wishing one on him so he would understand how SSD works!! Well, I am happy to say it worked. No more Kathy, ...Kathy,...Kathy!!! Just a normal sounding Kathy, on your left........
So John, you have three choices. Let it go, say something or get mad. Obviously, when dealing with idiots, you should use the latter. ;D
I hope today is a good day for you. Kathy
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On another post topic yesterday I wrote in all upset over my 1 year MRI which looked like I might have had 1.7cm residual tumor - turns out it's probably the 'fat' packed into the space.
Anyway, I & my co-workers are so relieved - however, I am now being called 'fat head' at work (said of course with much love & relief that it's probably NOT the tumor come back !!).
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I love you all .
i'm over the "pity poor me".
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Ok, that's iit, I'm not coming to any more of your pity partiies. Really, I didn't even know that you threw one....
Have a good night!
Patti
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Hi Satman--Just wondering--where did you have your surgery?? Who were your surgeons?? 8 CM sounds like it'd win the Gold ribbon if there was a contest for the biggest AN found and I might add, successfully removed!! Take care--Mary from MA ;D
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hi there mlb57,i had my surgery at plano presbyterian in plano texas[suburb of dallas].
my surgeon was DR.Chang. yea it was a big one and 6 months later i am still dealing with
quite a few issues,at least im out of the wheelchair,dont ever want to see a walker again,and now i really
dont need the cane.I tend to walk like Ozzy Ozbourne,ha,ha , it's ugly but i get to where i'm going.
check out some of my previous posts,there is some more detailed info there,if you care to read about it.
the one thing i truly feel blessed about through all this B.S. is the fact that i have found this forum,and have met some great people.
Obita,i sent you a p m,but not sure if you got it.
My computer has taken on a mind of its own.
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Satman,
You are my hero. You have gone from 8cm ...to pushing aside the walker. (I am still using the walker in public places to give me a safety barrier from being knocked over...4 weeks post sugery here... but hey I am walking on my own around the yard outside)
Model of healing inspiration you are to us all... and I thought my "ted the tumor" was a whopper.
SATMAN Super Trooper...Keep moving forward!
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I'm so glad that you're getting better. I know it's been a slow one but we are all pulling for you.
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Satman,
You truly are an inspiration! My An was 3.5 and pressing on the brain stem. My vestibular nerve was severed, so I still walk like a drunk twenty-six months after surgery. I think my attitude is getting better.............it may be the pills....not sure and my family sure doesn't want to find out. So I will keep taking them. Walking without aid is awesome! Keep up the great strides and keep us posted!
Brendalu
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thanks guys and gals , it is folks like you guys that really give me motivation.
there are so many days that you feel like you just want to give up,blow off therapy,stay home and feel sorry for yourself,etc,etc, because it seems
like no matter what you do , things just seem to stay the same. I hope that makes sense, anyway,all i can do is look
at all the people in my therapy class , and then you start to realize,ok, things are bad , but they could be much worse .
so, no matter what kind of day your having, just suck it up,do what your supposed to do,and believe me , i know its hard ,but in
time ,with your exercises and repitition, things will get better.
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hey man its so good to hear you are doing so well. I had a 6cm tumor and you are recovering a little faster than I did. Just keep workin at it. It seems (at least sometimes) that the people with the smaller tumors are the ones with more problems. I don't understand why I really can't backtrack my tumor more than 2 or 3 years ago. I dunno. Frankly, I don't care. Life is better and that's all that matters.
Chris
P.S.- what kind of work do you do? I worked as a stockboy in the freezer/dairy departments in a grocery store. Working was very therapeutic for me.
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Hi DFCMan,i work for ABC news in Dallas .
I havent been back to work yet but,I am going back nov 5th.
And I actually cant wait to go back, ,I got cabin fever,i am ready to get out of this house.
I went to the doc in april after I took of work early and did'nt come home for 2 months because they did a cat scan and found
an 8 cm tumor.
damn I'm glad thats behind me.