Will I have to exercise the rest of my life?

[spgreenfield]

I am ashamed to tell you guys that I'm frustrated.  Only because I have had almost everything go PERFECTLY for me - my facial weakness is nearly unnoticeable 3 months post op....and so many of you are STILL waiting years to begin to smile!  Mine isn't completely "there" yet, but it's awfully close....

Balance issues are getting to me.  Now that no one can SEE that anything is wrong with me, I want to FEEL like it as well.  Or at least in the balance area. 

I went and did vestibular exercises through PT, and she released me since I was doing so well.  Well, I'm ashamed to say that when I lost my accountability, I lost heart and stopped.  Somehow I thought that my "living" day to day would suffice - since I walk throughout my house, stores, treadmill and even once golf.  I garden which means I'm bending over nearly upside down (interesting experience but I don't fall over....yet) and digging, etc. but I'm still quite dizzy.  SSD - hearing has not returned, so I have that frustration as well.  I detest this "wonky" feeling in my head - it makes doing even the simplest thing a monumental task - and NO ONE except those of you who have experienced it - understand.  My husband will never quite "get it" I know - but part of me SO WANTS to give him a pill or injection that will allow him the pleasure of knowing how I'm feeling 24/7.  And it's hard to tell if the dizziness is vestibular based or I'm sick.

I'm going to cry the rest of the day if you guys write me back that I'll have to exercise forever - but if I do - please tell me how YOU arrange your day so I can get an idea of a successful practice?

Pam

[Cheryl R]

Pam, I did not go back and read any of your previous posts.   Did you have a balance nerve cut with your surgery?                 I never did any vestibular rehab but if you can get outside and walk every day might be worth trying with moving the head back and forth.      Does something like this bother you alot?       It takes longer for some people than others to have the other side learn to compensate for the loss on the tumor side.       Most people do improve over time.      I think I asked you before if your surgeon ever gave you a number to call if you had questions.          He might be a better one to ask questions than your ENT.      Some ENTs are good and understand ANs and others do not as well.     
Families do not under stand how we can feel when we look just fine and it has been some time past surgery.       A pill for them to feel it would be a great idea.  Don't we wish!      I am no balance nerve and my husband still does not understand it is not something in my case that is "cured" but my brain will always have to work harder.
   I wish I had the perfect answer for you and hope it gets better for you soon!                            Cheryl R

[Chances3]

Hi Pam,

I am sorry to hear that you are struggling, but this takes time.  I was a real mess for almost 8 months, I am now 17 months and I still struggle with a lot of issues.  I'm not a doctor, but I would bet you still have a lot more healing left to go and that translates into progress.

On the personal side - yes others don't know what we experience.  I look great, oh if they only knew what I see and feel.  My wife doesn't get it either, and that has been a sore point for me.

Stay strong and continue to do your vestibular exercises, stimulate your brain by getting out there and doing as much as your body can handle.  Continue to post, you're in good company here, we all understand.

[spgreenfield]

Cheryl - I was informed after surgery that nothing was cut, but the AN was completely excised. (think that's the term....) but my hearing never came back - so far - and my facial nerve is still working hard to regenerate.  I have days when I feel as though I have a wad of cotton stuck in my left cheek - today is one of them.  Hence my thought that it was water retention since it's puffy there too.  My balance was better a few weeks ago - probably when I was being vigilant with exercising for balance!  Now that we're into spring allergy season, I'm not sure if I'm feeling a combination of light-headedness from allergies along WITH vestibular issues or the lack of exercising my vestibular nerve.  I always feel really wonky when I've sat much of the day doing nothing but read, but lately I've been outside trimming, digging and planting.  I have started my Zyrtec for the season, but I may do what the doctor told me to do with ear pressure (which I do NOT have right now) and take some Benedryl on top of the Zyrtec and see if I either fall asleep standing up (joke - I won't try it.....) or feel better.....right now even moving my head is making me feel dizzy and it normally doesn't......

Chances3 - thanks for the encouragement!  I feel a bit sorry for our spouses in a way....we don't look much different, but to accomplish what we have easily done in the past - now is a feat of strength and endurance.....thanks for helping me to not feel so alone.  And I still wish there was a pill!  I know they have glasses ppl can put on to imitate some illness but I can't remember what it is....

Pam

[leapyrtwins]

My neurotologist gave me vestibular exercises to do post op - in fact, he had me start doing them prior to my surgery so it would be easier to do them post op.

He mentioned that at some point (post op) they wouldn't be beneficial to me.  Not sure what point that was; maybe a few months post op?

Will have to check in with him to see.

Jan

[grammyslim]

Question - do people having radiation have the same issues with balance etc. or are these surgical issues?

[leapyrtwins]

As far as I recall, it's possible to have balance issues after radiation.

The balance nerve isn't cut, but generally the tumor (AN) swells and it can bring on side-effects.  I believe balance issues can be one of them.

Jan

[chloes mema]

I think Jan is correct about the radiation and balance issues.  The doctor I talked to Friday said I'd experience fatigue, balance problems and something else which escapes me at the moment.  So I guess we're all in the same game, so to speak.

Karen

[Tod]

Take it easy on yourself, although I know it is difficult and frustrating. Three months out is not all that much. Give it another three months and I would hope you will feel a difference.

I was still wonky up unitl about eight or nine months post. I also didn't realize until a few weeks ago how much better I feel two years out compared to a year out.

We're pulling for you,

Tod

[Jim Scott]

Hi, Pam ~

I'm sorry to learn of your ongoing balance and other issues.  Like you, after my PT discharged me, I quickly slacked off on the vestibular exercises.  However, I tried to compensate with a lot of walking (my empathetic wife accompanied me) at a local park.  We did this for a number of weeks.  We also played 'catch' with a semi-hard ball that was just a bit smaller than a volleyball.  Within a few weeks post-op, I felt pretty solid on my feet and within a few months noticed I could walk up and down the stairs in our condo townhouse without holding the handrail.  It took close to a year but eventually I could (and still do) get on an escalator (at the local mall) and not need to grasp the handrail at all.  For me, that was an achievement.  Fortunately, I never experienced the 'wonky head' feeling and I was already SSD prior to the surgery so that was not an issue for me.  However, although I regained very serviceable balance within a relatively short amount of time, post-op (and post-radiation) my balance is not exactly what it was prior to the AN symptoms manifesting themselves approximately 8 months prior to the actual AN diagnosis. 

As for unsympathetic spouses; I realize how frustrating that can be.  My wife, who has struggled with pain and discomfort as a result of having Fibromyalgia and several spinal surgeries was always empathetic to my balance issues and I never felt misunderstood.  Her years of struggling with pain and discomfort but almost never saying much about it while keeping an active schedule and a positive outlook were my example of how to deal with physical challenges.  To be honest, I'm an independent type and although I always appreciated her empathy, I rarely complained because (a) I didn't want to burden her with something she couldn't do much about and, (b) I wanted to get back to normal as quickly as possible, so I worked at regaining my balance and accepted whatever limitations I had to.         

As others have wisely posted, you're in the early stages of recovery and doing quite well.  Lower your expectations a tiny bit and realize that recovery is measured in months, not weeks.  This was the advice my neurosurgeon gave me immediately post-op, about the time he said I could begin driving again (2 weeks post-op).  I think you're doing great Pam and I hope your recovery continues apace. 

Jim 

[mattsmum]

frustrating as it may seem - 3 months is not very long so try not to be too despondent. some people improve in that time; but some don't and it takes longer. my vestibular therapist tells me that some people stop doing the exercises when they have improved to a point they do not feel they have a problem - but for some people they will need to keep doing some exercises on a more permanent basis to keep the improvement.
and it is correct that balance problems can occur with radiation too in some people (but not all by any means).
hope you see some improvement again.

[stoneaxe]

Find something you can love that challenges your balance. It's not exercise or work if you're having fun. I think it has to be something that pushes you beyond the norm. I think exercise is going to be necessary for me for life. But I don't see that as a bad thing. I love what I do for therapy. Everyone's mileage will vary however. I think this forever changes all of us to some degree or another.

[christynic]

Not that I want anyone to suffer, but it is encouraging to see that I'm not the only one... I had my surgery two weeks after yours and I still have constant wonky head.  I also tend to slack off on vestibular exercises, mostly because I've started having terrible headaches almost every day.

How are you feeling balance-wise now?  Is it any better since you posted in April?