ANA Discussion Forum
Archive => Archives => Topic started by: Battyp on June 22, 2006, 07:45:50 am
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After my 10 month follow up yesterday and a question from my doctor he got me thinking..I know scarey!
He walked in the room and asked me "knowing what you know now would you still go through the surgery" I just wondered how everyone else felt. Knowing what I know now and knowing how sick I was before surgery and knowing I wasnt' going to get any better only worse and that surgery was my only option I have to answer yes!
I took the fast track...diagnosed july 11th on the table august 23rd and they were worried I wouldn't make it until then. I didn't have time to research, decide and change my mind and I only had one surgical option. Just wondering how others felt.
Hugs to all,
Michelle
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I would of done nothing differently, except maybe not ignoring my symptoms and going the Dr. a few years ago!
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Batty:
I would not have changed a thing if I could do it all over again.  I had about 7 weeks between also.  Getting that thing "outta me head" was the most important decision I have ever made and also in my case the right one.
I feel like I won the lottery. Except for being deaf in one ear and multi-tasking seems a bit more difficult (my secret, I have not told anyone at work this one) I am no different than before May 13, 2004.
Cheers!  Kathy O'Brien
ps: And as Joef just mentioned, I shoulda gone to the doc earlier too - ah, lesson learned!!
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hey batty.
By the dr asking that question... to me... it would be like someone saying "do you 2nd guess your decision if you could do things differently". For me... as everyone here shared with me during my decision making process... never question your decision. Stick to it and whatever the outcome, you deal with it.
So, I don't question my decision. I'm fine with my decision and in my case, would not do a heinsight of it.
xoxox
Phyl
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Hey Batty,
Good question. There are days I wonder what would have happened if I never knew about the AN. I had very few noticeable symptoms. My hearing was decreased 12% and noticeable only when on the phone. If I didn't have good insurance I wouldn't even had had it checked out. It was that minor.
Now I wake up every morning with facial paralysis and numbness. I still think I did the right thing by having surgery. From reading some of the stories of other people I think I would have gotten a lot worse. Think it might have been quick since the doctors wanted to do surgery as soon as possible. I was diagnosed August 3 and had surgery on September 6.
Jean
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thanks for sharing guys. I think the doctor feels bad about my outcome as none of this was expected just knew it was a possibility. I think he was trying to see if I regretted anything. the only thing I regret is believing the dr who misdiagnosed me for almost a year..not what my surgeon did.
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Nan, here. I still fight with trying not to 2nd guess. I wish I had Phyl's resolve about that.
If my Chicago doc is right and I have Mal de Debarquement, too, I would have not rushed into surgery, though I was sick for 4 months priior.
But since my symptoms only got worse, I would have either watched and waited or opted for radiation.
Nan
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I think that many on the list have some regret
or other, could I ? Should I ? What if ? etc, etc.
The truth is, in many cases (like mine for example)
the safe time to defuse these monsters may well
have been 5 or more years ago
- when (often) there were no symptoms at all.
These things move from small to large over a 5-10 yr period
and give very little indication what is going on.
Many people pass away of natural causes
- without ever knowing they had an A.N.
(and by the time you present with multiple symptoms
- some damage has already occurred)
Often 12 mths misdiagnosis makes very little difference to
the final outcome - they simply dont grow that fast
It may make life a bit easier if we can comprehend
that no real consequence came of any error
- a similar outcome may have happened
a week, a month, or a year earlier
- who can say
In one way, I/we are all very lucky that it happened now
- and not 100 yrs ago
Clue : we wouldnt be writing about the experiance....
Best Regards
Tony
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The problem with the "knowing what you know now.." question is that you don't know what would have happened if you hadn't had treatment, or if you had chosen a different treatment. So, to me, it's not a question that can really be answered. We don't know what the alternative outcomes would have been.
Regards,
Rob
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Hi, BP,
I had the fast track to surgery also, 34 days. When they found my tumor with the MRI it was 3.5cm, when they removed it, it was over 4cm, mine did and was growing. I had a blood vessel feeding the sucker. I had no choice but surgery.
I do however, agree with Obita, I should have gone in a few years prior when my hearing started to go. Then maybe it wouldn't have been so bad.
Denise
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Rob in my case I actually do. I was so sick with head pressure/pain that I could barely get out of bed by the time they diagnosed the problem. My brain stem was starting to twist. I did have one neurologist tell me that AN's do not kill people and do not cause headaches and in her opinion do not need to be removed or treated. Then she looked at my MRI and changed her opinion and said..oh yours was highly involved and needed to come out. DUH LOL
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your neuro - did she work at the 7-11 ????
Best regards
Tony
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After my retrosigmoid surgery to remove a 3cm AN, I certainly do wish that I could have had radiation instead because it would've given me a much better chance at saving my hearing (which was lost). There were doctors who would have done it, but all of the well-known centers recommended against it.
The most frustrating part for me is that I've been getting annual physical exams for that last 20 years but not a single doctor ever caught it until it was already in the large category. I would happily have paid the $1,500 MRI fee a hundred times over to get my hearing back. I think eventually annual MRIs will become much more routine and start to notice these (and other things) much earlier.
Good question. Sometimes that hardest part of dealing with all of this is the psychological aspect.
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batty,
 One of the damnedable things about AN is that we have to make decisions based on percentages a lot of times.  If I wait, what other functions do I risk losing.... etc.  In some ways, a large AN makes the decision to treat easier, not that I envy anyone placed in that position.  The likelihood of imminent brain and nerve damage and/or death preclude much choice.
 I guess I subscribe to making an informed decision and moving forward.  There isn't much point in second guessing the decison.  Partly because you can't change it, and partly because you can't really know (except in very serious cases like yours) how a different choice would have affected your future.
 I do occasionally think about some old love interest, and whether I should have pursued more enthusiastically.  But then again she may have turned out to be Cruella DeVille's lost twin sister.  :D
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Yes, I didn't have a choice to watch and wait because the tumor was 4cm and compressing my trigeminal. I had no other symptoms because I sure wish I had known about this tumor when it was tiny so I HAD some options.
But if I knew what i know now I would have enjoyed my face more in the weeks leading up to the surgery.
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The only regret I have is not being more persistant with the doctors that I saw early on in my symptoms. I was misdiagnosed for almost 2 years. I always wonder how things would have turned out if I was diagnosed from the getgo :-\  But that wasn't what was planned for me.  I had one week from diagnosis to surgery and I have never questioned my decision to do it. I was told that if I did not have surgery, I would not be alive past 1 year. I do live with SSD, some facial paralysis and other AN goodies, but I am doing OK.
Good question Michelle
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I would have gone much sooner if I had insurance. I had to wait until I got insurance for treatment. Almost died because of it.
I lost my mother 1979 because she had no insurance.
       Paul
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Hi,
I am getting better at reading posts and being able to respond. Although I am only about 5 1/2 weeks post treatment, I am glad that I made the decisions that I did. Each day it seems that something new comes up that I had not realized was a problem post surgery until that very moment. But I tell myself that at least I am here to raise my children, which may not have been the case without treatment. I really don't think that anyone can go through the AN experience and come out the same after treatment but hopefully we all come out stronger on the other side.
Hugs and Kisses to all,
Karla
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Karla,
It is so good to see you posting. You are still in my thoughts and prayers.
Lynn
I wouldn't change my decision for treatment. I had a great team of doctors and a great support team. I'm at 10 months post op and am now back to feeling like I did before treatment.My pre op symptoms were severe hearing loss and vertigo. I still have ssd and balance issues. I am hoping my balance will continue to improve.But... without tratment I may have more issues by now.
I do kinda wish I had gone to the doctor earlier. I knew something was wrong, I was just scared to find out what it was.Fear is crippling at times.
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I find living in a "what if" state of mind to be quite detrimental to my emotional health! I just want to get over it and do what I need to do for myself, my loved ones, and my friends TODAY. I try to stay focused on the NOW part of life and live in the moment.
Capt Deb 8)
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I know I wouldn't have done anything different. I wanted that sucker out and it had to come out being it was pressing into my brain stem (had the sucker smushed into a third of it's normalcy). I wish I had a more realistic view of what was probably going to happen to me. I thought more of a, not me, I'll be fine, but it wasn't the case. Mind you, I didnt' have things I've read others have run into, but I just wasn't prepared to not be able to walk without a walker or someone holding me so I didn't fall over. Trying to make the best of what I've got..............sh!t happens, life goes on!!! :-\
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Yes, I agree with you both Deb and Static...life goes on and somehow we endure and adapt!
Karla it's so good to see you posting again!
Lynn made a comment about being 10 mos out and just now feeling normal...I'm still waiting for that to happen. I told my mom yesterday on our drive home that I feel like if my face would "wake up" I'd feel normal again and could adapt to the drunken sailor walk. It's the speech thing that really gets to me. The foggy headed feeling :(
Funny I haven't seconded guess my decision with my surgeon choice or the choice to have surgery. I know I didn't have a choice at the time so was surprised when the surgeon asked. I met a man yesterday that was in a lot worse shape than I was. He had a bad car accident and was disfigured. I know my situation could be a lot worse than it is and am thankful where I am. Scared but thankful.
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Batty,
I do have that foggy feeling at times... Do you ever have pressure on the back of your head?The doctors say it is hard to tell what comes from my neck and what comes from the surgery. My neuro otologist says the nausea and dizziness probably come from sacrificing my balance nerve but nobody knows about the pressure. I KNOW I will feel pressure on the back of my head and here comes the nausea and dizziness. At those times I feel very stressed and don't feel like doing anything.
I'm sorry I meant I feel about like I did before surgery as far as symptoms. Before surgery I had lost most of my hearing on my an side and now I have lost the rest of it. I really didn't think there would be much difference because I was almost deaf in that ear but I guess that little bit that was left mattered because it seems to get on my nerves a little more now especially in crowds.
I was nauseous and dizzy before surgery and I still get that way. I have to admit I haven't really challenged my vestibular system.1. I didn't realize how important it was( Deb's use it or lose it post helped)2. my neck and back hurt from a previous injury so walking very much makes my back hurt. I have started vestibular therapy and am trying to do the exercises. This week I had a cold? and couldn't go to therapy. I didn't really feel like it and when I called and they heard me she said they didn't want me to come.I have really improved since surgery I just feel I have been stuck here for awhile. I have A LOT to be thankful for and I am. I almost feel guilty for wanting more at times but then I know God didn't bring me this far to leave me like this!
This AN journey has been my first experience with cyber friends and I am so thakful you guys are out there. My family is great and they try but they just do not always understand and I am so grateful for you guys.
Thanks for letting me go on and on... it helps,
Take care,
lynn
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I think it's important to remember and to know "that we all did the best we could with the information we had at the time."
It'd be pretty easy for Chet and I to get lost in the "if only" but I know deep in my heart that we made the best decisions at that time with the information we had at the time. No looking back.
Hugs to all
Raydean and Chet
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I agree,....looking back the only thing I'd have done differently if I'd have insisted on going to a rehab facility when I left the hospital instead of relying on my mom and son. We just didn't know it would take two months for me to be able to get my eyes focused and start becoming more independent. I had no post surgical expectations...I didn't have time to think that far in advance and no one to ask :o)
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Like many AN patients, I really didn't see any viable option to having the tumor removed. At 4.5cm, it was doing damage and had to come out. I had about 4 weeks from diagnosis to surgery and made good use of the time by doing a lot of research and gettiing 'educated' as to what to expect, post-op.
I ignored my AN symptoms far too long...out of ignorance...and wish I hadn't. Other than that common 'regret', I have no reservations about having the AN surgery and my recovery has been going very well.
Jim
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Well Jim seeing how you are in that top 5% you better not have any regrets! :o) I see you took the fast track too. Gee, we should have cornered that before Disney did LOL ;D
thanks to all for sharing!
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Batty
I knew the risks going in and felt I had done my research. 20 months post surgery I wouldn't have done anything differently.
Dave
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By the time my tumor was diagnosed I didn't have any options it was "hurry up and get on the table" so to speak. The one regret I have is that I didn't push for a second opinion after the first neurologist didn't find anything wrong, that was 4 years prior to diagnoses, and certainly if I had been told by my GP he had sent a memo diagnosing my syptoms as "psychosomatic" I would have asked for a second opinion right then but I wasn't told, I was only told he didn't find a neurological cause for my symptoms. I was young and didn't question my GP, I know better now.
Kathleen
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Oh I hate that "psychosomatic" line from doctors. I had one tell me that about my son's condition which I didn't take and found the problem and send the doctor a letter with copies of the diagnosis...he's lucky I didn't tell me he was "psycho" LOL
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I would do it again. The problems I have had post-op are much easier to deal with and assimilate into everyday life than the problems I was having pre-op.
If that was a fast track, I must of had the jet-stream track. Went into the ER on 10/5 (thursday) because I just couldn't take the headaches anymore, diagnosed with the AN 10/6 and on the table 10/11. I never left the hospital from the time I walked into the ER on 10/5 until the 16th I think it was so I had no time/options to research, other than what the good doc told me. But yeah, I would do the surgery again, even knowing what I know now...what was my option...according to my doc...."have the surgery and deal with a few issues like the deafness, etc....or don't do anything, have a stroke from the AN putting pressure on my brain stem and die" not much of a choice!