ANA Discussion Forum
Post-Treatment => Balance Issues => Topic started by: HJY on March 10, 2011, 10:21:40 am
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I have a query - to which there probably is no answer - does anyone ever actually feel normal again after surgery? My balance is pretty good but what doesn't seem to be changing is that disorienting way the world 'shakes' up and down or side to side the moment I move 'quickly' - or should I say 'normally'!? I'm 13 weeks post and still find it hard to walk quickly, drive, manage shopping centre aisles and especially cooking!! Please tell me you do actually get back to feeling normal again!
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HJY-
I think that it is safe to say that all of those things will get easier and you will adjust to your "new normal"! I am 15 years post op and do all those things on a daily basis without giving it a second thought! ;) Thirteen weeks is still in the early stage when you are talking about brain surgery. Some of us recover faster than others. You will get there, I promise!
K ;D
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I'm quite certain you will get much better. I've spent much of this year completely frustrated with my balance, but it abruptly got much better over the past several weeks. I now have lots of time during the day, maybe an hour or more at a time, when I don't feel "wonky headed," or don't give a second thought to how I'm doing with my walking.
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HJY ~
Hi - and welcome. The short answer to your question is: yes. As you know, every AN patient (surgical, radiation or both) has a slightly different recovery experience. Some recover rapidly, others more slowly. With a few exceptions, the vast majority of AN patients do 'feel normal again' - but with a caveat. After undergoing complicated, extensive brain surgery, there is almost always some residual effect, albeit slight. I had a successful AN debulking surgery followed by FSR and recovered nicely but not without a few lingering 'reminders' of what I went through; a small 'numb' spot on one side of my tongue (no effect on the taste of food or my ability to talk and eat normally). I occasionally experience a very slight 'dry eye' condition (on the 'AN side' ) that needs no external 'lubrication' (blinking does the trick) and my balance, while very serviceable 95% of the time, can be lost if I stumble (rare). All of these deficits are invisible to others and have little to no effect on my quality of life. I drive and do everything I did before my surgery. I don't have the energy level I once had but I'm also retirement age, which is likely a factor. Frankly, in my experience, it takes months if not years to regain normalcy. I thought I had recovered completely by 6 months post-op. However, I noticed that my balance was better a year post-op and now, close to five years post-op, I believe I've adjusted as well as I'm going to, which is pretty darn good. So will you, and it won't take five years. I understand that 13 weeks seems like a long recovery period to you now but from what I've read on these forums, it is just a beginning. I'm sure you'll improve and at some point find your 'new normal', as we all do. I wish you well as you recover. Please keep us informed of your progress. Thanks. :)
Jim
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Hi HJY
All of the best advice has already been said here.
Before going in for surgery I put a huge picture on the lounge wall of a butterfly and underneath it I wrote "Here's to a new kind of normal".
I'm treating this like doing up an old car a bit at a time while hanging on to my sense of humour.
I still have half a smile and 50% of my hearing and while I can no longer wink at anyone hubby thinks that's a good thing.
Lean on us as much as you like buddy.
Hugs,
Suu xxoo
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Thank you so much everyone for your support and reassurance! I think I feel frustrated not being able to do quite the amount of activity the Physio is recommending. I have a little baby only 5 months old so this has been a HUGE journey! He was only 7 weeks old when I had the surgery. I do think my driving is being held back as I am nervous driving with my kids while I feel so 'fuddle headed'! It's good to know there is light at the end of this very looooooong tunnel!
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HJY,
I also think you are doing well for 13 weeks post op. You will hopefully see yourself gradually getting stronger and more balanced as the months progress.
There are "good" days and "not so good" days, probably from overdoing it on the "good" day :D
Add to THAT your children. Egad, it was hard enough for me to regain strength, balance just by taking care of myself!
So that may factor in also. How old are your other kids.
Rest when you can (right), if possible when baby naps. I raised 3 kids and was tired through it all- my AN was slowly growing without my knowledge at the time. I HAD to lay down when they layed down, and it made a huge difference in getting through the day.
Here's to a less fuddle headed day. There IS light at the end of the tunnel, it just may take some time to get there (really, give yourself 6 months to one year=you had BRAIN SURGERY)
Maureen
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Hi there!
I had my AN surgery 2 weeks after delivering my baby. So adding a recent pregnancy and delivery to the mix of neurosurgery equals your body being through some serious trauma!
I can tell you that I was thinking the same thing at 13 weeks. I was not driving, had significant nystagmus, lots of wonky head and the aisles at stores made me want to crawl in a corner and shut my eyes!
I am now 9.5 months post op. I am driving, just signed up for a 5k in a couple of weeks and tolerate shopping MUCH more. My eyes are still healing but have come a long way!!! Wonky head is still present but at shorter and farther between intervals.
Over time it does get better. My surgery was June 4th. Looking at my journal I was rating some days 3/4 at the end of August. My best advice is to try to get as much sleep as possible and exercise. Continuous exercise helps straighten things out for me. Of course, walking and balance exercises were all I felt I could do until the beginning of December...then I started jogging again. My husband got up with the baby as much as possible those first few months so that I could get rest and heal.
Everytime I reflect back, even now, I think 'wow' this past month was better than the last. I try not to compare day to day, but rather month to month as a whole.
I know being patient is hard and at times can wear thin. Try to focus on the positives...even the small ones. For example, the first time I took the baby out by myself was a HUGE deal. Other moms take that for granted, but for me that meant my stamina and balance were much improved!!! Celebrate the little triumphs in each day.
Good luck,
Kris
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I'm now 13 months post-surgery. Until I speak, or have a coughing/choking spell, I feel pretty normal. In the last couple of months especially, my energy levels have rebounded, and I feel incredibly normal.
For me, there is absolutely no comparison between 13 weeks and 13 months. At the moment (8:45pm EDT) I am about to put a 25lb pack on and go walk my dogs to prepare for next month's 56-mile trip.
Hang in there and be good to yourself. The body has its own calendar for healing...and sadly, it leaves you to guess at that calendar.
-Tod
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Of course your mileage may vary but I feel better than normal. My advice to anyone is to find something you can enjoy doing...even get passionate about....that challenges your abilities and work harder at it than you ever thought possible. I tell people that having a brain tumor was one of the best things that ever happened to me....and it's true!
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It was very encouraging to read all these posts today. I am 5 1/2 months post op AN. I have a lot of problems that many of you have described. Yes, this is very frustrating, I want to get back to normal now !! I thought that my case was unusual, and even though my operation was a success, I would have to accept the new normal. Well after reading all the posts, I feel that I have more recovery left in front of me, that makes me excited. Everyone gave some great advice. Stay positive, don't give up. Do some form of physical activity but don't over do it, and get plenty of sleep and rest. I would advise to get vestibular therapy if you haven't already, and if you have taken therapy, don't forget to continue to do your exercises.
I have a question for Jim Scott - what is FSR ?
Be well everyone !!
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I have a question for Jim Scott - what is FSR ?
Fractionated Stereotactic Radiosurgery.
Basically, small 'doses' of targeted radiation administered daily over a period of weeks. The intent is to alleviate the problems sometimes encountered with single-dose radiation procedures. Relatively new and, in my case, very effective. No ill effects, no complications and a rapidly dying tumor.
Jim
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13 weeks is not a long time. I personally didn't feel like myself again until about 9 months after surgery. The fatigue lingered on for a little over a year. I had my surgery when my little one was only 4 months old and my oldest was 2 1/2 years. It has been a little over 2 years now since surgery and some days I feel a little off. Most of the time I am my old self again. My recovery was more mentally than physically. The stress of having 2 small children and brain surgery, the financial burden of me not being able to work for 5 months really took its toll. Hang in there and know that you will be your old self again:)
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I have been up and down for three years...has anyone else?
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Yes, I'm in the same boat as you :-[ Just haven't been the same since the surgery. All about accepting the "new you," which is hard to do. I suffer from the tinnitus/ "brain fog" stuff, and of course the anxiety/depression associated with it. Have sought professional help, and am going to try acupuncture for the mood stuff. Send me a personal message if you want to chat more in depth. The results vary so much with this surgery. Some people are blessed to go back to their normal routine without even a mention of the tumor! Hang in there, it can get discouraging I know.
Maureen
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I was going on 3.5 years of significant balance problems even after having done considerable balance therapy and thought it would be that way forever. That was the summer of 2007. These days I get compliments on the quality of my surfing (waves not web.... ;D) Some folks see great benefit of traditional balance therapy...for me it took more.
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Thanks. I needed that.
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Hi HJY
I see you were 13 weeks post-op back in March and I wonder how things have improved for you since then? I'm now at about 13 weeks post-op. I had retrosigmoid surgery on May 12 to remove a 3 cm AN. Do you still feel disoriented like you described in March? What are you still dealing with and what has improved? Many thanks!
I have a query - to which there probably is no answer - does anyone ever actually feel normal again after surgery? My balance is pretty good but what doesn't seem to be changing is that disorienting way the world 'shakes' up and down or side to side the moment I move 'quickly' - or should I say 'normally'!? I'm 13 weeks post and still find it hard to walk quickly, drive, manage shopping centre aisles and especially cooking!! Please tell me you do actually get back to feeling normal again!
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I have been up and down for three years...has anyone else?
13 November will be 3 years for me also since my operation. I have my good days and some not as good. Right now I get tired easy but I know that is because mine started growing back and I had cyberknife radiation for 5 days the first week of August. Some days I go to work and come home eat and hit the bed the last week.
I am just glad to be alive even with some of the problems, I was told I was lucky that it was found just in time the first time. I kept telling my doctor there was something serious but he just said it was all in my head (will guess it was but not the way he meant). Guess what the denist told me it was something more and wrote my doctor to do a CAT scan or MRI, that is how it was found. Needless to say that is not my main doctor these days.
I don't know what brothers me the most these days this or my back, which is funny it was alot better about a year or so after the AN operation.
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Hi HJY,
Wondering how you are doing now with your balance and how you are feeling? It does take time to find your new normal so just be patient with yourself. If you haven't done balance therapy, I would highly suggest it. Life does get better. It's an adjustment and I have never felt the same as before surgery but it's okay, I'm glad I'm alive. Hang in there!
Wendy
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I had 5.AN related surgeries betweem 2002 and 2008, and it has been my experience that improvement spans months and years.
Stoneaxe gives good advice. My daughter was 2 when I had my first surgery, and while exhausting to do things with her, I did as much as I could because I wanted her to have a "normal" dad.
Am I normal? -far from it. I have no hearing and no balance nerves.
As Stoneaxe said, it's the challenges that make things better.
I had catastrophic complications during surgery in 2007 that left me with some motor difficulties. One of the best things for me was to try to keep up with my child.
I am now approaching the 5 year anniversary of that surgery.I work full time (including 2 hours commuting daily). In addition, I have a new reason to keep improving. She is 5 months old and a real blessing.
To all of you who are dealing with the issues caused by ANs, hang in there. You can get better for a long time to come.
Will it be easy? Maybe, maybe not. Will you be better for persevering, YES.
I wish you all the best.
Take care,
Jeff
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Congratulations Jeff on a new little one! I am very happy for you and your family and know thru time how hard it has been for you and how lucky you have been to recover as you have. I hope your children will not have the NF2 also. You have been my inspiration that there is life with NF2. It is always good to hear from you on here!
Cheryl R
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Congratulations all on reaching these milestones! I was told somewhere somehow that we have to change our definition of normal after an AN. It is a life changing event.
I'm finding Tai Chi is working wonders for my recovery.
Mei Mei
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Hi all!
Thanks for all your input and updates! I know some of you asked how things were going now...I’m 11 months post op! Wow! Time flies! By six months I was actually feeling pretty good - we went on a family holiday and I was able to run along the beach, go down caves - tried some rock climbing which was fine on the way up but ended pretty hilariously with me screaming for help unable to get down!! :o About June/July I noticed the tinnitus was getting worse and changing and over a few weeks lost about 40dB of my hearing across most frequencies in the AN ear. At the same time my balance deteriorated. This sent everything into a bit of a tailspin and my face slowed down its recovery too (at 11mths I am symmetrical at rest, have full eye closure – although it’s still weak if you ‘prise’ it open – a reasonable closed lip smile that looks happy, pleasant and - I think – quite pretty , my ‘big’ smile is still asymmetrical but I show enough teeth that people who don’t know me don’t seem to bat an eyelid or notice too much). I had an MRI which showed no tumour regrowth (thank goodness) but no irritation or other cause for the irritation and loss. They tested for autoimmune diseases - which were all negative. The PT did tests which showed irritation of the vestibular system - worse than those shown in march. The final outcome? They have NO idea - they tried a course of steroids but this did little to help my hearing. So the outcome is that I’ve had to go back to all my balance exercises from months ago, which is very discouraging, and they have recommended a hearing aid! The only other information offered was that it could be irritation from the muscle packing that they place in the void after tumour removal. the only option if that’s the case would be removing it - this would have to be translab hence I would lose my hearing. There is also a theory that there is a small slip/stub of the vestibular nerve left in that ear which is regenerating. Hence the irritation (whatever is causing it) is affecting that as well and making my balance deteriorate.
I’m not sure whether others go through similar things. The Dr who did the surgery said that while there are a few patients who go on to lose preserved hearing, the general picture is very uncommon for people post AN surgery. He has referred me to a Neurologist to see whether there is anything they can add.
I feel very frustrated at going backwards so badly - especially when I know have a very active crawling baby! He's go, go, go this one!! If any of you know others that have had similar experiences I’d be interested to hear!
Take care,
Heather