ANA Discussion Forum
General Category => AN Issues => Topic started by: satman on March 25, 2008, 11:34:53 am
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Hey gang,Apr 1st will be one year post-op for me.
I was wondering if anybody still had some balance issues that far post-op ?
If you did'nt dont worry I got ya covered,starting to wonder if I'm normal ?
back to my old saying "the surgery was the easy part".
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Hey Satman
Congratulations on the anniversary. I'm with you on the surgery thing -- in retrospect, that was the easiest part. I'm only four months out and balance seems to still be the biggest issue -- although the lack of taste is really annoying. It seems like everything I do to help my balance, like exercises, only seems to aggrivate it. And walking heel-to-toe with my eyes closed is a ridiculous effort. I'm planning on running the Revlon run in May and I'll really be disappointed if I'm still weaving and stumbling around. I'm interested in what others have to say about balance. Does it ever really return to normal?
Good luck with your balance.
David
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Satman -
congratulations on your upcoming anniversary! 1 year is definitely a big milestone.
I'll be celebrating my 1 year anniversary about 8 weeks after you on May 31st!
While I don't have any noticeable balance issues, lately it has come to my attention that I'm not as "stable" as I thought I was. Just yesterday, I was taking a rather long walk and I realized that I was getting dizzy and experiencing "wonkyheadedness" plus my balance was a little shaky. I really thought I was over this months ago, but I guess it's still somewhat there. On the average day, I don't notice it at all, but there are times it does crop up.
Hang in there; you've come a long way,
Jan
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Hi John: If I'm walking slowly, I find it more difficult with balance than when I walk at a brisk pace.
Walking in the dark still triggers balance problems; also, walking on uneven surfaces is a bit difficult,
though they're not as bad as when 1st post op.
I'm 1 year & 9 months post op.
So, April Fool's Day is it? Remember how far you've come since then..... & CONGRATULATIONS on
making it thru the 1st year of healing.
Always good thoughts, Nancy
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April 17 will be my one-year surgery anniversary. I'm in the same boat as the rest of you as far as balance is concerned. I still get overwhelmed with a lot of visual input as well, such as being inside the Mall. Given the economy this may not be a bad thing. I still find it hard to look at something to the side when I'm walking (like window shopping).
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I can't believe its anniversary time for so many (myself included... 2 yrs April 3).
Happy wellness anniversary to you all!
Phyl
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Catflower, I'm definitely with you on the difficulty window shopping! :'( If I'm looking straight ahead, I can manage to look like it's not my first day with my new feet. Try to turn to look at something while I'm walking and it's not pretty!
And Nancy, I have the same problems when it's dark or when I try to walk slowly. I feel like I have to concentrate so much more on walking straight now - which I don't think many people think much about normally. Then again, no one ever said we were normal.
Satman - congrats on the upcoming anniversary. As far as we're concerned - you're completely normal!! ;D
Lori
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Satman:
Congratulations on your one-year surgery 'anniversary', John :)
Although my balance was shot just prior to my surgery, it was never all that bad, post-op - but I can still relate. I don't usually have any trouble in the dark, in malls, etc. but walking backwards is still a challenge. Fortunately, the need to walk backwards doesn't come up very often. However, occasionally I'll step backward and inadvertently bump into something that was behind me (that I didn't notice) and I'll have trouble regaining my equilibrium as quickly as I would like, although I've never fallen, just momentarily stumbled. I consider this a challenge to be met and conquered, and it will be....eventually.
My 2 year surgery anniversary isn't for another 10 weeks or so but I'm pleased that the time has gone so quickly and that I've shed almost all of the few post-op 'reminders' of my AN surgery. What hasn't been resolved is either very minor and/or something I've fully adjusted to by now, so, I'm good. :)
I'm sure your balance will improve in time but, as we can all attest, recovery never comes soon enough. Keep up the fight to get back to normalcy, John. You may be struggling and occasionally frustrated but your indomitable spirit is an inspiration to many. I wish you continued healing and more good days, my friend. :)
Jim
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I would like to say Congrats too. I remember reading your posts and how difficult things were for you. You are a very sweet, strong person. I am so glad it has been a year. A great milestone.
Sending Sunshine.
Robyn :)
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Thanks for all the replies,as usual you guys are always there for me,whenever I am having a bad day you guys lift my spirits,
When looking back, I as in all of us have come such a long way,but I must say ,if I had to do it all over again I would prefer a bullet [not really]
I can remember it like it was yesterday [thank god it was not], My heart goes out to everybody that is facing this demon ,I will say for me the best therapy is right here on this forum,without it I would be lost,Thanks to each and everyone of you,and congrats to all posties with anniversary dates coming up.
We've come along way baby !
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Satman,
Congratulations on your first year anniversary! We both had huge tumors and , yes, I had balance issues for a few years the first time I had surgery. The good news is that human bodies continuosly improve and the balance gets better. So much better, that, in fact, I had absolutely no balance issues 19 years later with AN regrowth that was pushing on the brainstem! The only way you won't improve is if you do nothing at all, so continue challenging yourself and hang in there!
Eve
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Just wondering if these balance issues create any problems with driving?? I had a similar question about SSD... whether this was an issue for driving (particularly left ear).
Thoughts?
I have my GK consult today!
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Sorry, more questions on the same note...
Is the balance nerve automically cut (no way around this?) during surgery? Or does it depend on the individual, and could the need to cut it be predicted in advance from the MRI?
If there are no (perceivable) balance issues before the surgery, will this mean balance/dizziness is better or worse (all else equal) following surgery?
Does -everyone- have balance issues after surgery (this kind of gets back to my first question i guess)? Is the long recovery (sounds like many are 1 year out and still wobbly) typical??
I am a runner (well, not so much since having my babe) and have run a lot of half marathons and the NYC marathon (HIGHLY recommended). There are some charities out there (diabetes, MS etc) that encourage oridinary people to train for and run exciting marathons around the world (some costs covered) to raise awareness and funds (for research and treatment). Perhaps we could start "team AN"! If blind people can do, why not SSD wobbly ones? Just a wild thought...
I meet with the surgeon next week to discuss treatment... breathe....breathe....
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Just wondering if these balance issues create any problems with driving?? I had a similar question about SSD... whether this was an issue for driving (particularly left ear).
Thoughts?
I have my GK consult today!
The balance doesn't cause any real problems driving since it's the car that's in motion and not your body, as in walking. The only problem I have is needing to look quickly from side to side or if I hear a horn blow I'm not quite sure where it's comming from. I try to park where I can pull out instead of needing to back out.
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Hi calimama,my brainstem was swollen big time and thats what caused my balance issue,My balance is a lot better but I still bump into walls,turn around to fast and lose it,etc...
as far as driving,it's more of a vestibular issue than balance,but there is therapy,and it does work.
Please know that some people have long recovery time and some are back to doing things as usual within 2 weeks,everybody is different.
It all depends on so many factors as in,size, location,your DR.s exp,etc.
Try to relax and just get it over with,you are in the right place here and you will have so many more questions but try not to worry about them.
here's how my DR put it to me"John, there are 100 steps to go through,you are on step one". Breathe...............................
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Satman...
Thanks for the feedback and words of encouragement.
I assume that your brainstem swelled due to the surgery (or did you have some compression issues?)... and this is what is normally treated with steriods right? How long did the swelling take to subside?
Good to know that all cases are different... tough to know what that might mean for me!
I know...i know... breathe. Here i am still just packing my bag for the journey... i have yet to start travelling! and have no idea of my path! or destination! But just trying to understand as much as i can before this process takes on momentum of it's own.
You are all so very brave and wise... I, like so many, appreciate your sharing.
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Hey there calimama,well lets see,I still have some balance issues so my brain stem is still swollen and my surgery was in april / 07 .I was in a 3 day induced coma,I really dont know what the steroids are for,I had 3 operations in a 4 month period and my hair started falling out due to steroids I believe.
The reason my stem was swollen is because I had a 8 cm tumor pushing on it and like most men I ignored the symptoms thinking it was BP related,needless to say,I WAS WRONG. Do you know what size tumor your MRI showed ?
I know your scared but in all honesty, you wont feel a thing.believe me,the surgery is the easy part and you have so many people praying for you,and also to lean on.
Remember it is nothing you did ,it is not your fault.
You have allready beat it really, it's not cancerous. you will be fine ! stay positive.
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Calimama -
I had steroids post op but they were for my facial nerve since it I had a little issue with it when I first woke up in ICU.
I do know that the docs give you something prior to surgery to "shrink" your brain, but I think that's just so they can work inside your head better. The last thing I recall the anesthesiologist saying to me was "I'm going to give you something to shrink your brain" . I made some smart-ass comment about not being able to afford a smaller brain than I already had :D The next thing I knew, I was waking up in ICU many hours later with the room spinning. I have no idea what that "something" was.
As Satman said - stay positive, you will be fine.
We're all here for you,
Jan
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thanks Jan and Satman for words of encouragement!
I met with a surgeon today and a radio-type (oncologist? something like that). The consult was for GK and LINAC (fractionated rad), but it also gave me my first crack at taking to a neurosurgeon. It seems that i have the option of radiation (either method) which is great.
Because my AN is med-large (2.2x2.9cm), there are greater risks of facial paralysis (he said 20-30% perm, 50% temporary). I will see what the 2nd doctor has to say next week.
I am leaning towards radiation still (i think). I have more questions by the hour so i need to follow up with these.
Getting there....
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I do know that the docs give you something prior to surgery to "shrink" your brain
I think they forgot to give me the antidote for that when they were done... ::)
Lori
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Satman, While at 12 months I felt great and realized a lot of improvement, I had a lot more change to look forward to in the second year. My balance and general energy improved slowly and steadily throughout the second year. And I have had "moments" of knowing that things had advanced vastly.
At 27 months I no longer have the surprise two-step jog occur. I can run, though not so gracefully as before. ;D I am 66.
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You had surgery on April Fools day?? Not a good idea!!! LOL I still have the same balance problems I had pre-op, 3 1/2 yrs later, but I work around it, still ride motorcycles, bicycles, horses, but gave up flying. My depth perception got bad post-op and no-one can explain why, It probably is not related to the AN. Anyone else notice a depth perception problem???
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As a newbie, I say congrats on your 1 year anniversary. I am having the balance issue pre treament. Did you have that? I hope it disapates for you, it is annoying for me now, if it gets worse, oh my - world beware. I am wishing you well.
By the way, April 1st this year will be the 40th anniversary of my husband's surprise marriage proposal. We April Fools are still happy and I am thankful for his support. Hope you have a support system, too.
Are you in Satellite biz? TOTALLY off the point. My husband was in sat. communications for 5 years before retiring.
Best Wishes for improved health,
Mary
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Hi Mary,as a matter of fact I do operate a satellite truck,I work for an ABC affiliate in Dallas,what aspect was your husband involved in ?
CONGRATS on the 40 year mark,thats a huge accomplishment !
As far as the balance issue, I was pretty normal before surgery and what drove me to see the DR. was that all of a sudden I would get dizzy and that was accompanied with a headache and my left eye would go blurry,then came the drunk walk every now and then and then I would hear a wosh,wosh sound in my left ear,all this would happen at the same time. I kept blowing it off because my DR. had put me on BP medicine and I quit taking it so I thought it was related,needless to sat it was not.
I finally broke and went to see a DR. she wanted to do C scan and thats when they found an 8 cm tumor and the rest is in the history books.
I could not ask for better support between my wife who has been awesome through all this and the people on this forum has been a big part of my motivation.
my wife dealing with my situation in one hospital and her mother in a different hospital had quite a bit on her shoulders.
the day I was released from in-patient re-hab her mother passed,My wife is about the strongest person I know,we are lucky to have a support group.
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Frist of all - congratulations on the upcoming 1-year anniversary!! And, may I also add that your wife sounds like an amazing woman!
I am wondering if the fact that I apparently have quite a few balance issues alreay will minimize more issues post surgery? I've gradually been losing balance for some time now - and it seems that my brain has been adjusting quite well. Of course, my career as a tight-rope walker had to end ::)... Dr. G congratulated me in his office, telling me that I could totally fail a field sobriety test without actually ever drinking.
Satman, have a wonderful day, and give your wife a big hug!
Debbi - in from the ledge
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Hi Debbi,I wish I had more info for you on your balance concerns but there's not a single anwser that fits everybody,we are all different,it's going to depend on many factors,but I do believe that you shouldnt worry to much about it,there will be plenty of time for that.
Just try to relax and get that thing removed and above all "stay positive".
I pray that you little friend is in a great loction for removal,and stay off the ledge. Your balance may be better post-op,Been known to happen.
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our own lovely tsl/Teresa posed the questions to the docs on the CK Patient Support board about vestibular issues... which their replies really do assist those with issues, regardless of what kind of treatment was performed (ie: micro vs radio-treatments).
http://www.cyberknifesupport.org/forum/default.aspx?f=1&m=13767
C. Phillip Daspit, M.D. , one that responded in this thread, is a self-professed "dizzy doctor" (neurotologist at Barrow Neuro Institute in AZ) and he really gives some wonderful insight that may help all that inquire.
May be worth a peek.
Phyl
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Satman,
Congratualations on your one year anniversary!!! Time flies when you're having fun!! I personally think April 1st is a great day for surgery. I had sugery on 4/1/1996, for something other than an AN, and it was a great day. I celebrate every year!
Brenda
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So, Satman -
today is your big anniversary ;D
Any celebration plans?
Congratulations again,
Jan
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Satman - happy, happy, happy anniversary! Stay away from the high wire, but otherwise have a glorious day!
Debbi - smelling the flowers in NJ
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As far as celebrating,Have straw will travel.
probably the local cantina,anyone actually.
Margaritas anybody !
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As far as celebrating,Have straw will travel.
probably the local cantina,anyone actually.
Margaritas anybody !
I'll drink to that ;D
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Bottoms up, down, sideways - who knows anymore.
Well John, " you've come a long way baby " & the journey ain't over yet.
HAPPY 1ST ANNIVERSARY Nancy
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I just came from the dentist and can't chew - so looks like a Margarita dinner for me anyway!!
Happy Anniversary, Satman!! And many, many more!!
Lori
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Just wondering if these balance issues create any problems with driving?? I had a similar question about SSD... whether this was an issue for driving (particularly left ear).
Thoughts?
I have my GK consult today!
The balance doesn't cause any real problems driving since it's the car that's in motion and not your body, as in walking. The only problem I have is needing to look quickly from side to side or if I hear a horn blow I'm not quite sure where it's comming from. I try to park where I can pull out instead of needing to back out.
I have to disagree catflower. I had terrible balance issues due to radiation damae and couldn't drive for 2 1/2 years. I also had to trade in my brand new audi for an suv so that I could sit up higher because that made me less susceptible to the nausea and imablance driving.
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Congratulations John, I cannot believ that a year has gone by. Can you beleive it? I know sometimes it feels like a lifetime but it sounds like things are going well for you. I am so happy to hear that. Oh Happy Day. Best, Holly
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Thanks Holly,the time has definatley flew by.
As they say "time flies when your having fun", the only problem is I'm not having too much fun yet.
Ha,ha.............