Can I mitigate my balance issues pre-op?

[CF]

I'm wondering if it is hypothetically possible for me to mitigate my balance issues now (with methodical balance exercise regimens), and therefore put off my surgery until either my vestibular schwannoma grows to a dangerous size, or my hearing begins to deteriorate, or my balance gets worse (I don't think it's supposed to). I just realized there's an awesome forum section on POST OP balance issues ..... but was wondering if I can attack those issues successfully now, pre-op, given what I will now view as not as critical balance issues I'm experiencing now (compared to the balance issues that others on this forum have experienced pre-op and have generously shared their storys ~ thank you!).

Bottom line - I'm looking for any kind of rationale that would basically justify a watch and wait strategy, key component being the significant mitigation my balance issues and keep them "tolerable" (balance is the driver here, not hearing).

Thanks in advance for your thoughts!

[nteeman]

CF,

I have been following your posts and get the impression that you are looking for justification to stay 'watch and wait.'  Of course YOU are the best judge of that and in my opinion if your symptoms are mild enough that they do not interrupt your lifestyle you can remain W&W. BUT if your symptoms ARE causing you problems you might consider taking steps for treatment while your tumor is small.  This way you have more options (radiation vs. surgery) and is less invasive. Waiting until an AN is life threatening is not, in my opinion, a good idea as at that point treatment will have less options and be more invasive.

I know that finding out you have an AN is upsetting but it won't go away by itself. I think you need to take a deep breath and list your options and start to consider what YOU can best live with. If you can live with your balance issues you can W&W, but from my read of your posts I get the feeling that it is bothering you and you need to address it.

From my own experience I only had minor balance issues pre and post op, but I did become SSD. I have no regrets having treatment when I did, BUT had they found it earlier I would have preferred treating it while it was at a smaller size. 

I know this can be overwhelming, but even if they gave you a pill that would manage your balance for now it would probably only be a temporary fix and you would then have to deal with treatment for a larger tumor.
That is my reaction to your posts, I hope this helps.
Neal

[Pooter]

CF,

I wholeheartedly agree with Neal's assessment..  I've come up with an anology for this..  Let's say you have a car..  The "Check Engine" light comes on..  Minor inconvenience, not really causing significant issues..  So, rather than take it in and deal with whatever may come, you put tape over the light so it's no longer annoying you..

Is it theoretically possible that down the road when your engine starts making noises that you can save it (i.e. not have to replace the engine), yes..  But, in my opinion it's a fool's gamble to think you can put tape on it and only AFTER your engine dies try to not have it replaced..

Given that you're already having balance issues AND you have no hearing issues, you are gambling that later when your balance is affected worse by the AN and/or your hearing starts to be affected (let alone that most of us have sudden, immediate and permanent onset of hearing loss before diagnosis/treatment) that then, and only then, will you seek treatment in the hopes that your balance isn't permenantly affected and you save your hearing (leaving out of the equation that any hearing you have at the time of treatment will be generally the most you can hope for after treatment)..  It seems that you want your cake (cure the current balance issues) and eat it too (cure the balance and come out with perfect hearing after treatment)..  I just don't think that's a realistic view of the world.

I'm with Neal.. I know this is overwhelming.. or can be.  Heck, when I first heard (on a cell phone, in traffic, by the NURSE), I thought I was going to die.  I literally thought my life was over.  Life is different now, but it's certainly not over by any stretch of the immagination.

Like Neal, those are my thoughts on your recent posts in general.  I hope this helps.

Regards,
Brian

[kiwi]

CF

Once your tumour falls into the large catergory, all your options seem to be taken away from you. By the time I found mine, I was offered translab surgery only as the best course for me.  I would have preffered not to have surgery but not an option now. Being SSD before surgery is not the end of the world but it I wish I could hear again. It would be a difficult decision to judge which is worse - bad balance or deafness. I wish you luck on your decision.


Jacqui

[TP]

Well my only suggestion is to go ahead and work on your balance issues. I believe if you wait and watch or go ahead and have surgery it is best to be in good shape. I did not have balance issues after my AN was removed and I had a big tumor and afterwards had SSD and double vision. However, I recovered nicely due in part to my strong legs. I am in martial arts and I believe my balanced improved greatly due to my stronger legs. I did notice prior to finding out I had an AN that my balance was starting to change. That helped me to determine to go back to my pain Dr who then suggested I have a brain MRI where they immediately diagnosed my AN. 

If you can't do some type of martial arts then I would join a gym and work on exercising your legs. After strengthening your leg muscles then stand on one leg and hold your other leg up near your knee or out in front/side of you. Do this for a period of time on each leg and this will help with balance, at least in my case it did.

[Jim Scott]

CF ~

To your credit, you've made it clear that you're seeking justification to 'Watch-and-Wait' or, to be blunt about, to find an excuse to procrastinate addressing your diagnosed AN.  To be fair, there is nothing unusual about that.  No one really wants to undergo AN surgery.  I certainly didn't.  Unfortunately, I procrastinated by ignoring my worsening symptoms; unilateral hearing loss, extreme dizziness, loss of the sense of taste and stabbing pains at what I later discovered was the site of my (by then) very large (4.5 cm) acoustic neuroma.  I was darned lucky to come through the debulking surgery with no real complications.  Over three years later, I'm still grateful for that.  However, my procrastination probably made my situation worse than it would have been, had I admitted something was wrong and sought medical help much sooner than I did.  So, when it comes to acting on addressing a diagnosed AN, I'm not a proponent of procrastination.

I believe that you probably can mitigate your balance issues pre-op to some degree (how much is a problematical question, at best) but your idea that you can somehow wait until just the right time before having surgery seems flawed.  I suggest that because there is no way to predict the growth rate of an acoustic neuroma you would seem to be basing your idea on a false premise.  As the posters before me have correctly stated, holding off on surgery could make your choices narrower.  Once a growing AN has damaged/affected delicate cranial nerves, they may not be automatically restored just by removing the tumor.  Of course, choosing a date for AN removal surgery is completely in your control and you're free to make whatever choice you think best for you.  However, I would hope that you would base a treatment timeframe decision on realistic scenarios so as not to find out later that you made a calculation that could prove quite costly in terms of your potential recovery success.  I want to see every AN patient enjoy the best outcome possible,  Procrastination on having removal surgery may not necessarily further that goal so please consider your choices carefully.  I trust the posts on this thread will help you do that.   

Jim

[CF]

Thanks all.

I just got word from my surgery doctor (vs my radiation doctor .... they both work together and I had consultation with them separately. BTW the radiation doctor is supposed to do "both" radiation and surgery, representing the "balanced" POV, while the surgery doc is just the surgery doc, represent .... eh ..... the surgery POV  ) .... that the steroid is not a viable option, not expected to have any impact to my balance, and in fact is not applicable and not considered a treatment for AN's. Needless to say I expressed my disappointment to the surgery doc that such a treatment would even be offered to me (and get my hopes up). Remember, walking in to the radiation docs office, I was DEAD SET on surgery ..... looking to get the best counter argument for radiation. Not only did radiation doc (who BTW indicated he prefers radiation) agree that surgery was "best" in my particular case, he offered up the tid bit of the steroid option, and he told me he'd mention to Doc Surgery to get his take. Needless to say, Doc Radiation never spoke with Doc Surgery, so I got the news on the steroid treatment cold and hard (just the way I wanted it BTW .... lol, no sugar coating please).

So .... for sure I feel SURGERY IT IS. The question is WHEN?

[CF]

No, I don't want to have my cake and to eat too. I'm looking for an "optimal" point to transition from "watch and see", to surgery (hey that rhymes).

I've ID'd these scenarios (numbers are purely estimated, but speak to "sooner vs later"). They are listed in order of preference ..... 
a- 4 months of a good life, have the op and then have the same or better situation
b- 1 month of a good life, have the op and then have the same or better situation
c- 4 months of a good life, have the op and then be worse off
d- 1 month of a good life, have the op and then be worse off

The "don't procrastinate" school of thought suggests these scenarios?:
b- 1 month of a good life, have the op and then have the same or better situation
c- 4 months of a good life, have the op and then be worse off

Definition of "same or better situation"
- 95% of my balance eventually returns
- I lose most of my hearing
- I have minimal facial paralysis
- I have minimal other post op issues

Definition of "worse off"
- Less than 95% of my balance eventually returns
- I lose ALL of my hearing
- I have facial paralysis
- I have post op issues

[CF]

Well my only suggestion is to go ahead and work on your balance issues. I believe if you wait and watch or go ahead and have surgery it is best to be in good shape. I did not have balance issues after my AN was removed and I had a big tumor and afterwards had SSD and double vision. However, I recovered nicely due in part to my strong legs. I am in martial arts and I believe my balanced improved greatly due to my stronger legs. I did notice prior to finding out I had an AN that my balance was starting to change. That helped me to determine to go back to my pain Dr who then suggested I have a brain MRI where they immediately diagnosed my AN. 

If you can't do some type of martial arts then I would join a gym and work on exercising your legs. After strengthening your leg muscles then stand on one leg and hold your other leg up near your knee or out in front/side of you. Do this for a period of time on each leg and this will help with balance, at least in my case it did.

TP, I can relate. I also have done some kind of MA, right now I do the kettlebell and lift weights, follow Ross Enamaits workouts. But now I think Ross's stuff is too much for me (hence my quality of life judgement). I've always been active and sought athletic pursuits. I'm sticking with the KB, and am planning to work on specific balance exercises. I can walk with my eyes closed, head nodding up and down or left to right. Of course I have to open them so I don't hit a wall (or someone sees me in the halls at work  ) I can stand on one leg with eyes open, but when closed, I begin to fall ..... I'm training myself to open my eyes as I begin to fall, to see if I can recoupe, and I allow myself to hop in order to recoup. I can still do lot's of things, one legged squats each leg, that even many non AN'ers cannot do. So maybe I'm being a baby about my balance (I'm thinking) ... maybe it's not as bad as I think .... and maybe I'm rushing into surgery. The last thing I want to think to myself post surgery is ..... shoot, I should have waited.

The "pro-radiation" doc I met with this week seemed to be in agreement with the watch and wait. No one has a crystal ball, I believe everything in life is about odds and trying to increase them, that's all I want to do, given my understanding of what i think I want.

[CF]

Jim, I appreciate the frankness. Thank you.

To your credit, you've made it clear that you're seeking justification to 'Watch-and-Wait' or, to be blunt about, to find an excuse to procrastinate addressing your diagnosed AN

Is it procrastination, or deliberation? Is there such a thing as rushing into surgery? Never heard of such a term until introduced to me here on this wonderful forum.

I suggest that because there is no way to predict the growth rate of an acoustic neuroma you would seem to be basing your idea on a false premise.

If that is true, then any statement to go sooner rather than later (or later rather than sooner), would also be based on a false premise if size of tumor and timing of symptoms (deafness) were the measures of one's decision, correct? Would one know that the damage to be done to my cranial nerves will happen in month 2, vs. month 4? I don't think so.

All I know is this:
1. I'm OK now (except for 95% of my balance)
2. I have a tumor in my head.
3. The tumor will grow, but no one can predict the rate.
4. If it grows too large, I will die
5. Somewhere before I hit #4 I need to get the bugger out. Hearing, facial paralysis, good outcome, bad outcome ..... when and to what degree .... all speculation, just like the stock market.

 

[Jim Scott]

CF ~  You wrote:

Is it procrastination, or deliberation?

It's semantics, mostly. 

Is there such a thing as rushing into surgery?

Yes, but few AN patients actually 'rush' into surgery.  The few that may do so are usually frightened, ill-informed or misguided by doctors who may not always be as well-informed about acoustic neuromas as the patient assumes them to be.  Very few people are eager to undergo brain surgery, making the term 'rush into surgery'  a bit of hyperbole. 

If that is true, then any statement to go sooner rather than later (or later rather than sooner), would also be based on a false premise if size of tumor and timing of symptoms (deafness) were the measures of one's decision, correct?  Would one know that the damage to be done to my cranial nerves will happen in month 2, vs. month 4? I don't think so.

That is correct but ignores the fact that should the tumor experience a 'growth spurt', which is not predictable to a medical certainty but does happen, the consequences could be very unpleasant for the AN patient.  Undergoing removal surgery before the AN does irreparable damage to crucial cranial nerves is simply being prudent and an attempt to preserve one's chances of having a good outcome. 

Frankly, I have no desire to debate your rationale for whatever decisions you make regarding addressing your diagnosed AN.  They are certainly a personal choice, not subject to others opinions.  I've offered my point of view - I'm just another AN patient, not a doctor - and I'll simply leave it at that.  I appreciate your candor and will support whatever decisions you make in addressing your AN, be it sooner or later.  I do that for every AN patient that posts here.  I trust you'll make a decision that is best for you.  However, I would caution you against over-analyzing the options.  One can get mired in 'what-if's' to the point of becoming paralyzed and never being able to make a concrete decision one way or the other.  I've seen that happen.  However, I'm confident that you're more than capable of sifting through your options and making a reasonable, timely decision that makes the best sense to you.  I hope these forums help. 

Jim

[CF]

Thanks, Jim. I do appreciate the opportunity to "deliberate" before making a judgment. Most folks that know me know that procrastination is not one of my traits. My tendency to analyze does have an end point (need a little more data, other's experiences, and maybe one more doctor's opinion)... probably not soon enough for some .... and too soon for others (I work with information systems as well as power engineers .... boy talk about analysis paralysis) LOL  .

This forum has been very helpful and I'm thankful I found it.

[Adrienne]

In my opinion, it sounds like you're already doing pretty good things for your balance.  Those one legged weighted squat type exercises are excellent.  Those were really hard for me pre-surgery.  I thought I just had to strengthen my core more-but in hindsight, I just didn't realize my balance was going.

My GP was really, really concerned about what my balance would be like after surgery.  His reasoning was that it was pretty good prior to surgery and only could go downhill.  What he didn't account for enough is the shape I was in prior to surgery, and the fact that the tumor was so large and slow growing that I had been compensating for years without even knowing it.  I can honestly say that post surgery there were no balance issues to speak of.  What a nice surprise.  I can't say my balance is *better* after surgery (I still tip over when my eyes are closed on one leg) but it's not something that bothers me on a daily basis.

As for the discussion on watch and wait, or surgery........it's funny how my perspective has changed after surgery.  Prior to surgery there is NO WAY I could have watched and waited.  No way.  Just wasn't my nature.  Needed it out (of course, mine was twice the size of yours too so I really didn't have that option).  In hindsight though, I think if I had a 1.5cm, I would at least watch and wait long enough to see if I could determine whether there was a pattern to my specific tumor's growth.  ie: at the 6 month mark, had it grown at all?  If it had, I may be closer to making a move.  If it hadn't, I think I would wait and do it again another 6 months from then.  Of course, like I said-this is all in hindsight.  It's also based on my surgical team giving a speech at a conference afterwards-telling everyone that for a tumour your size that isn't causing major issues, they would definitely recommend watching and waiting.  No one comes out of this *better* than before treatment.  They don't *fix* something.  Even my scenario (which I consider to be as close to a 'best case' scenario as possible) ended up with some ringing in my ear and *reduced* hearing.  Unless you're noticing drastic changes........?  Of course, like Jim mentioned (I think it was Jim), once you start losing things, you don't get them back.  It's too late to go back and wish that you had dealt with it.

These AN's are so annoying in their unpredictability and individual outcomes!!!!!!

I wish you luck.  Either way, I think you should keep up your balance exercises/core work, whether you're planning to have surgery or watch and wait.  Can't hurt!

[Pooter]

I've ID'd these scenarios (numbers are purely estimated, but speak to "sooner vs later"). They are listed in order of preference ..... 
a- 4 months of a good life, have the op and then have the same or better situation
b- 1 month of a good life, have the op and then have the same or better situation
c- 4 months of a good life, have the op and then be worse off
d- 1 month of a good life, have the op and then be worse off

The "don't procrastinate" school of thought suggests these scenarios?:
b- 1 month of a good life, have the op and then have the same or better situation
c- 4 months of a good life, have the op and then be worse off

Definition of "same or better situation"
- 95% of my balance eventually returns
- I lose most of my hearing
- I have minimal facial paralysis
- I have minimal other post op issues

Definition of "worse off"
- Less than 95% of my balance eventually returns
- I lose ALL of my hearing
- I have facial paralysis
- I have post op issues

Nobody can predict the outcome of surgery, be it taking place in 1 month or 4.  In my opinion, it's equally likely that you'll have a "same or better" outcome than you will a "worse off" outcome.  Likely, it will be somewhere in between those two distinct outcomes.  I'd say that I retrained 95% or better balance, lost ALL my hearing on the AN side, minimal facial parallysis and some post op issues as much as 2 months after surgery (but better now)..  I'd certainly fall in between those scenarios and I would suspect that others would too.

I'm with Jim in that I'm not interested in debating your decision making process.  It's certainly a personal choice and will respect any decision you wish to make.  I just want to make sure that you make that decision with clear, realistic goals in mind.  Hopefully, this forum has aided you to make the best decision for YOU, YOUR tumor, and YOUR situation.

Regards,
Brian

[Lilan]

I feel for you -- you are in the worst phase (I can see in retrospect), suffering the symptoms and spinning (mentally) as fast as you can.

The good news is, it is indeed just a phase.

I too was dizzy and it made me downright miserable. I was bound and determined not to have surgery. (And I have a very forceful personality when I want to. I actually talked myself onto an airplane without a boarding pass once, after 9/11.)    I took steroids and they did buy me time short-term.

Lo and behold, some months later I was willingly having surgery. You'll figure it all out and arrive at a destination (that may surprise you).

IMO if you have surgery, you should go for the best surgeon your legs (and your insurance plan) will carry you to, then put it in his/her (though they seem to be mostly his) hands (as well as whoever else you may believe in spiritually).

No matter how many numbers you attach to it, you can't control things to that degree. (Though you couldn't have told me that when I was spending hours every evening scouring medical journals.....) No decision can make this not have happened. You have a tumor you could not have prevented, and in a way some outcome already *has* happened --- you just don't know which one yet. But you're in the "bargaining" stage right now.

At 44, with your brain power and carefulness, I predict you'll do great with whatever you choose!