ANA Discussion Forum
General Category => AN Issues => Topic started by: Pruneface on May 12, 2011, 07:00:38 pm
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Has anyone been basically "normal" post-op? That is, life goes back to what it used to be--- you can work at your job, you can go out, you can enjoy life, you're pretty much like you were before the operation? It sounds like everyone has major adjustments to make after the operation. I'm expecting to be rid of a problem with my head and then to carry on with life. Am I looking through "rose-colored" glasses?
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Pat ~
As you know, every AN patient has a slightly different experience. Most recover and go back to fairly normal lives. I did. However, although we don't wish to be negative, we have to be realistic. AN surgery is major and can have an effect on your quality of life, so some struggles should be expected. However, nothing is guaranteed one way or the other. AN surgery does not automatically equate to a diminished quality of life. We try to be positive because most AN surgery (and radiation) patients come out O.K. and those with issues usually have them resolved, in time. Your recovery will be measured in months, not weeks, although its likely that you'll be past your initial recovery period within weeks. I was driving (highway) within 2 weeks of my date of surgery, with my doctor's approval. I spent a week at Disney World two years after my surgery/radiation and went on almost every ride - with no problems. Walked miles every day, too. However, it took me two years post-op, even with no real complications, to be able to do that successfully. I still don't have the same level of stamina I used to have but as a retiree, this isn't an issue for me. So, now, 5 years post-op/radiation, I consider myself 'back to normal'.
I sincerely hope that you can think positive and picture yourself returning to a normal lifestyle, post-op - because you probably will. Just be prepared to exercise patience as you recover. No matter how well you do, it usually never seems fast enough. Well, that was my experience. You may be more disciplined...most people are. :)
Jim
P.S. I 'fixed' your post.
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Like Jim said, we are all different. Attitude is the key to my recovery. I am different post surgery, and I just accept the difference. Some kids fall down and look for Mom, other kids brush off the dirt and keep playing.
I had translab. SSD, but I have a BAHA. Not as good as 2 ears but it beats SSD and a whole lot better than profoundly deaf. I am always mildly wonky, but I have learned to live with it. I had a shop full of wood working equipment, but I sold it all because I still have 10 fingers. I still have my boat and use it...no problems, but I will not ride my bike because I would probably fall off going down a steep hill. I lift weights everyday, but I don't run anymore...I have an elliptical and use it. I had a stroke right before my AN surgery, and a heart surgery right after the stroke, and I am now retired. I have short term memory loss from the stroke and have problems talking sometimes.
All this sounds pretty bad, but I have a wonderful life. I accept this as "NORMAL". If you saw me, you would not guess I was ever sick a day in my life. I am physically fit, my wife thinks I'm still pretty easy to look at, my kids love me, my grandkids pull on my pants leg and want to sit in my lap.
I'm the kid that brushes off the dirt. No matter what type of recovery you have, you don't need rose colored glasses to have a great life. You get one shot, so don't waste it looking for Mom. Keep on playing!
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Thank you, both Jim and James, for the speedy response. I have a friend at church who seems to have bounced back; he does not seem hindered in any way. However, the AN Forum does seem so negative. My goal is to look at this as a removal of a problem, not the beginning of other problems. I'm thankful to hear from you both. My surgery is a month away, and I can't wait to get it over. I am a determined, active, no-nonsense individual, and I don't want my condition to be a cause for slow-down or change in behavior. Yes, I do realize that every surgery is different, but this site tends to look at the bleak outcomes quite often. Anyone who's had a good outcome, let's hear from you!
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I have to disagree with your comment that "his site tends to look at the bleak outcomes quite often." I believe that all of us who post on this forum are celebrating life despite any post op problems we have. We share our thoughts, our concerns, our information, our good days and bad days. I think the majority of us see the glass as half full, not half empty. Despite any post op problems I have, I am thankful to be here- to enjoy my family, my friends and to celebrate my future. :D
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Thank you, both Jim and James, for the speedy response. I have a friend at church who seems to have bounced back; he does not seem hindered in any way. However, the AN Forum does seem so negative. My goal is to look at this as a removal of a problem, not the beginning of other problems. I'm thankful to hear from you both. My surgery is a month away, and I can't wait to get it over. I am a determined, active, no-nonsense individual, and I don't want my condition to be a cause for slow-down or change in behavior. Yes, I do realize that every surgery is different, but this site tends to look at the bleak outcomes quite often. Anyone who's had a good outcome, let's hear from you!
Having been around the forum for a little while now I don't understand what you mean when you say "this site tends to look at the bleak outcomes quite often". Do you mean that we tend to discuss those who have suffered a less then favourable outcome with their surgery or GK?
Personally, I feel what we tend to do is support those who have recurring headaches, or those who have facial paralysis and can use help with all the new health care needs they have (ie how to care for and protect their eyes), how to know if they should call a doctor if they are suffering a side effect that doesn't seem right like CSF leak? And we tend to support those who are just diagnosed and don't know where to turn.
I had a way good outcome. But I still relied heavily on the folks here for support as I made my way through my AN journey. I think what happens is there are those who have good outcomes and drift away from the forum, grateful for the support they got here, but moving away from this chapter of life. There are many who stay because they rely on the assistance of those who have been through it, or they want to pay it forward. I'm one of those ones. I could drift away, as I have had such a good recovery, and sometimes I miss a couple of days visiting, but I like to come to the boards. I hope that I am a source of knowledge and support like these folks were for me.
Anyway, like I said, I had a really good outcome. Having all my pre op symptoms disappear, and the only complications were the loss of hearing and a slightly dry left eye I think I made out pretty good.
All the best to you during the wait and your subsequent surgery. I know that I can't wait to get it over feeling. Sounds to me like you're going into this with a good attitude and a good outlook.
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Anyone who's had a good outcome, let's hear from you!
Pruneface:
I am so sorry you feel that this forum is negative. It is a support group for those who are going through alot. Quite often we are venting about the obstacles, challenges, difficulties we face because we hope to find comfort, suggestions & solutions from those who have experienced hearing loss, balance issues, facial paralysis, & debilitating headaches. That's why you see so many posts about bad stuff--that is part of the AN experience.
Having an AN is not the end of the world, but its is something that I would not have wanted to go through without this crowd. This forum has helped me so much. We have so much in common & unfortunately, it's not rose colored.
Please have your friend from church join us on the forum so he can share his positive outcome. We can sure use more positive around here. After your surgery, I hope you will stick around and help those who are seeking answers & comfort through such a difficult time.
Syl
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Pat ~
Like the previous 3 posters, I feel that I have to weigh in on the 'negative' aspect that you (and occasionally ,others) see in the ANA website discussion forums. This is a fairly common misperception.
As Lauren, Nikki and Syl have explained, these forums are aimed at those dealing with an acoustic neuroma, be it those newly diagnosed and seeking direction or those post-op or post-radiation that are struggling with problems and seeking information, advice and support from folks who have been through something similar. Naturally, those AN patients that are post-procedure (surgery or radiation) and have few-to-no problems have little reason to keep visiting or posting here. Some of us do remain active in an effort to help and encourage other AN patients, just as you have been encouraged - and we are honored to do so. Unfortunately, because the majority of posts naturally include some form of problem to be dealt with, one might get the impression that AN surgey is all doom and gloom. Not so. It's no picnic but can be handled and problems surmounted. Only a small number of AN patients have truly intractable issues. The vast majority see their problems resolved in time, with patience, therapy and occasionally, surgery, when necessary, but they do come through this. The caution here is that this is not a surgery where you stay in the hospital a few days, come home, rest for a few more days then resume your normal activities as if nothing happened. Recovery can be fairly rapid, as it was for me, but there are definite limitations as you recover. Most are associated with balance. Like many, I simply absorbed whatever minor deficits I incurred after my surgery, made the necessary adjustments in my lifestyle and moved on, as I'm sure you will. A positive attitude and the determination to get your life back, as it were, can be a huge benefit in your recovery. I believe you already have those and, barring any unforeseen complications, you should come through this experience just fine. Then perhaps you'll be helping to assure and support newly diagnosed AN patients on these forums that are a bit intimidated and/or discouraged by the 'negative' posts they read. I'm hoping that is the case - and that you have a fantastically successful surgery.
Jim
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I had my AN surgery (retrosigmoid) almost 4 years ago and my BAHA implant 3 years ago and my life has been back to normal for a long time.
Everyone is different and we all heal differently, but ultimately the vast majority of us live normal lives.
For some it's a "new normal" after surgery (for example my new normal involves being SSD) but nonetheless it's normal.
Some of the stories on the Forum can be scary, but life can be scary too ;)
Seriously though, there are worse things in life than having an AN.
Jan
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I have to agree with all of the above posters. I have never seen this forum as negative. It was a tremendous help to more. There was so much information here and so many kind people that stay around to help others. I can not get here everyday due to a lot of teacher work every night. Be positive. I just had a second surgery in 5 months for a different tumor--a parotid gland tumor (salivary gland) and when I was down one day, I just talked to myself and said being down will not change a thing. I will still have a slow recovery. So I'm just trying to do normal things and act normally and feel better already. I will be going back to work on Thursday, 2 weeks after my surgery. Hang in there and be positive. Life goes on and it is good. :D Sandy
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I can only tell you about my experience. The first few years of my recovery, I tried so hard to be my old self again. It doesn't work that way. At least, not for me. I was constantly tired. My short-term memory wasn't very good anymore. I had alot of issues with my right eye(dry-eye, mostly.). Finally, about eight years after the surgery, I came to realize that I wasn't the same old me. Once I admitted that to myself, and started making the necessary allowances, things got a whole lot better(and easier) for me.
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I don't even know what normal is. When I was in my 20s, I was bullet proof. Never going to wear out. Had kids and in a few years, they could run faster than I could, ride a bike faster. Oh man, a gray hair...what the heck is that about? Well my mile times are getting slower, but thats just because my knees are sore today. Well, today I noticed that my knees are always sore, and now I have more gray hair than brown hair. Gee, the kids are in college, and I begin to wonder if my wife still loves me as an empty nester...yes she does! But I miss the kids. Now they have their own kids, I cannot run anymore, and the grandkids run faster than I can walk!
That old saying that life is not a destination is true. Even if you never got an AN, normal is going to change just because you got a little older. Just rub off the dirt...
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I have to disagree with your comment that "his site tends to look at the bleak outcomes quite often." I believe that all of us who post on this forum are celebrating life despite any post op problems we have. We share our thoughts, our concerns, our information, our good days and bad days. I think the majority of us see the glass as half full, not half empty. Despite any post op problems I have, I am thankful to be here- to enjoy my family, my friends and to celebrate my future. :D
I was not a happy camper post-surgery. Like you, I am a very active Type A person. And looking back at my posts, you can see I had headaches, adverse reactions to pain meds, etc. I got very depressed and my family was shocked, because I am a cup half full kind of gal. But honestly, 6 weeks after surgery, I was working, albeit fatigued and with a scratched cornea. 4 weeks after that, I was back to a normal life...deaf in one ear and tipsy now and again, but truly normal. So, yes, you will be fine...just give yourself permission to be a "patient" for a few weeks.
Of course, now I have to put the family through my hip replacement surgery on August 5. Only 5 weeks to recuperate this time--another show to vend. I refuse to get depressed this time! It's all about attitude! Go get the beastie out and move on.
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AMEN!
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I joined this website almost 2 years after my surgery. I wanted to make sure that other people knew there were success stories out there. I do have to admit that this site scared me when I looked at it prior to surgery. I don't see anyones stories as being negative, just their own experiences. I am thankful for all of the information I have gotten from this site. With that being said....brain surgery is a very serious operation with possibilities of horrible life long side effects. My life is normal and great! I was fatigued, ( more than just a usual tiredness) for about a year. Give yourself plenty of time to feel like the "normal" that you feel now prior to surgery. Some people get right back to life and others take several months to a few years to feel like themselves again. I dont remember if you have hearing loss or not, but if the hearing nerve is removed SSD takes a while to get used too.
Take care and best wishes for a speedy recovery!
Julie
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Now that I am through the surgery and basically fully recovered, I will respond to the the "normality" question. I had no headaches, no negative effects, and was myself after just a few short days. Having sought information fron the forum was generally helpful, but I found myself waiting for those not-so-positive outcomes, which didn't come. I have no facial paralysis, no balance issues to speak of, no "leaks." Basically, I am the same as before the tumor started affecting my body. I would urge people not to expect negative outcome; in fact, I resisted the urge to read about those who had problems. Going in with a positive, assured, "I will be fine" attitude is most of the battle.
Please know that my surgery was long (10 hours) and my tumor was fairly large (more that 3.6 cm). My cerebellum had two contusions on it and my brain stem was pushed to the side. So even rather serious conditions do not result in problem outcomes. I am truly blessed and ready to go forward from here.
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Pat ~
We appreciate that positive message based on your experience. I enjoyed a very similar outcome to my AN surgery (no complications, rapid recovery) and I also feel blessed. I agree that having a sincerely positive attitude (and, in my case, lots of prayers said for me) is a major attribute although I don't believe attitude, alone, guarantees a good outcome - but it sure makes the experience easier.
Unfortunately, some AN surgical patients do experience less than good outcomes and/or develop complications post-op that make their recovery difficult and can negatively affect the quality of life for that person. That is a harsh reality that, to maintain the ANAs integrity, we have to acknowledge and discuss as we attempt to help and support those AN surgery or radiation patients that are experiencing post-op difficulties. That doesn't mean that we can't celebrate the success stories of AN patients like you. Frankly, we love receiving these types of very positive messages from AN surgical patients attempting to encourage those facing surgery in the near future. Thank you for yours. :)
Jim
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Great news!!
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Pruneface:
Congratulations on such a positive outcome. Now, I hope you will stick around to provide encouragement for others who are seeking positive outcomes & to share your story with those who don't believe that life can be normal after an AN.
Syl
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This forum has really been an important part of my dealing well with my AN. I have not had surgery yet, but I go for balance tests this week and will see my doctors soon afterwards to get their thinking on my case. Comments and experiences here are realistic and factual, and this is what makes the forum so useful. None of us wants to face a "worst case scenario," but if we do find ourselves in one, we want answers, advice, and support. This is certainly the place to find all of that. Hopefully, as I go through this process, I will be able to make my own small contribution.
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Thanks for posting the follow-up. Glad to hear of your positive outcome, and that others can read about your experience!