In need of reassurance.....

[susierg]

So this Tuesday will be 4 weeks since my surgery (Mid Fossa) to remove my 7mm AN.  Have been recovering slower than I expected, but trying to be patient.  My hearing has not returned, but am still hopeful.  My main concern is my balance.  I had felt that I was making some slow progress, but the last couple of days have been really bad.  I started PT last week hoping that it will help.  Just dont understand why I all the sudden I'm regressing.  Could hardly stand in the shower this morning and walking has been a challenge today.  I know that there aree good days and bad days, but I just didnt expect to be gowing backwards this far into my recovery.  Anyone have any thoughts, suggestions, reassurance that this is not something going wrong?  Would appreciate any feedback. 

[CHD63]

I am not a doctor, but from the posts on this forum, it seems to frequently be the case to have some days better or worse than others on the balance issue ..... unrelated to any complications.

For me, drinking too much coffee, not getting enough sleep, or additional stress will always throw me off on the balance issue ..... even 4 and 1 years post-op.  I also still have to be careful after sitting in the same place for awhile, not to get up fast, turn and try to walk .....  never works!!

Keep doing the walking and gaze stabilization exercises every day ..... it truly will get better and for the most part, stay better.

Clarice

[LakeErie]

After surgery, balance compensation can take months according to Johns Hopkins website. Age is a factor in vestibular compensation as Hopkins says people over age 60 can take longer than younger people.
Hopkins also says most people are better regardless of age by 4 months. As  I have posted before, it took me ( age 65 ) seven months to lose the bobble headed feeling. But, I did learn that I could function close to normally in spite of the feeling. Walking with head movements was beneficial as the balance issues did improve gradually over the  seven months until one morning I woke up and felt fine, and wondering how I got better so suddenly. Again, this is one person's experience.  Take small improvements in your abilities as victories and they will add up  over time. Expecting to feel "normal " all at once may lead to disappointments. The small improvements do add up.Take it a day at a time and think about what is better, not worse, is a good prescription. Good luck

[Jim Scott]

Hi, Susie ~

I'm sorry to learn that your recovery - specifically your balance - is not proceeding at the pace you had hoped it would.  As you know, AN surgery recovery is usually measured in months, not weeks.  Realistically, it just takes time and each AN surgery patient recovers at their own, unique pace.  In the context of AN surgery recovery, four weeks isn't very long.  I had a great recovery but was just getting my bearings, as it were, at four weeks post-op.  Once I started getting stronger, my recovery was relatively rapid.  My balance was never the same as pre-AN of course but I learned to compensate quite well and have gotten much better over the (6) years since.  I'm not clairvoyant but I suspect that your recovery rate will improve before long.  As Clarice astutely stated; it really does get better.

Jim

[susierg]

Thanks to all for the reassurance.  I guess I'm just expecting to bounce back like a teenager.  It just scares me when things are progressing, although slowly, and then I have a day like today that I can't even stand up in the shower without holding on.  I did have a rough night last night....not sleeping well.  One other thing that I did different, which may or may not have any bearing on my situation....I slept on my surgery side for the first time.  I have noticed that when I tilt my head to the left, things are fine, but tilting to the right (surgery side), things go all wonky.  Thought that trying to sleep on that side might jar something...lol.  Just grasping at anything I guess to make it allright.  Knowing that it does take some people months to get there balance back does help calm my anxiety a bit, but really need to get back to work and there is no way I could possibly drive right now.
So...I will continue with my therapy (I've only had one session) and again try and be patient.

Thanks again!

[JWW]

Hang in there Susierg! I know it will get better for you......just know it. Alot of good advice and empathy here. Post whenever you are frustrated. Best wishes.

JW

[sunfish]

Getting over those balance problems seems to be an individual thing.  It really took me two years to feel like I wasn't fairly wonky headed every day.  I smugly believed that most of it was behind me as of this spring, but I've recently had some worse days.  Kinda light headed yesterday, lots of missteps over the past couple weeks, had to use the grab bars in the shower this morning.  It's not too bad, and hasn't affected my employment, but probably drags my energy level down a bit.

I'm not really sure the "disequilibrium" has gone away, maybe I've just gotten used to it!

[lrobie]

Susierg,

I'm feeling exactly as you are describing at 4 1/2 weeks post-op.  I have to keep telling myself that the balance issues may take a little longer than I anticipated.  I'm on my 3rd week of physical therapy, along with doing the exercises that Clarice shared with me.  I haven't walked around the block as much because my husband has me out and about doing other things.  Maybe that doesn't count.

I wish you the best. 

Lisa

[Chances3]

Hi Susierg,

I had middle fossa and this October makes it two years.  It took a really long time for me to feel better, somewhere around 9 months to a year.  It took another 6 months for me to feel "almost normal" but I am not sure if complete normal will return for me.  I was astonished that I could continue to get better so far past my post op, well into 18 months.  You're in the very early stages, there is much more healing you will have, and yes there are set back periods, I don't know why, but I had many of them.  Stay strong, you're on the right road. 

[leapyrtwins]

Everyone's recovery time is different.  Some recover faster, some slower.

And the fatigue from surgery can last forever - or in my case maybe it just seemed like it 

I had lots of days post op where I felt I was going one step forward and two steps back, but in time I started to make steady progress. 

It's not a race.  Listen to your body and hang in there.

Best,

Jan

[It is what it is]

All the above responses are helpful for me as well.  What I've noticed in these first 28 days after surgery is that when I push myself with the vestibular exercises, the next day is more wonky but then after that I think I experience improvement.  Just wondering if your PT shook things up a bit and maybe your brain is busy recalibrating?  Please keep us updated.

Karen

[19jan46]

Hang in there--things DO get better.  My surgery was many, many years ago but the memories are fresh.   It took a full two years for me to get through a day without being reminded at least once of that darned tumor.  But recover I did.   One thing that really helped me and continues to do so is to not have a completely dark house at night.   We have nightlights in all the hallways and cubbies.  In hotels, if nothing else is available, we leave the bathroom light on with the door a bit ajar.  I tend to lose my balance if I cannot focus on something, anything, even a sliver of light beneath a closed door.  This continues even today, but it isn't something I consider a handicap.   The same goes for moving about with my eyes closed--something I avoid like the plague--getting shampoo into my eyes is a bit of a double whammy for me.    I think of myself  NOT handicapped, altho my hearing is one-sided and I do have the slight balance issues.   "Normal" is what I choose to be.   Life has been good for me and it will be for you, too.   Just give it time and above all, learn to laugh at and with yourself.   Dwell on the positive.   You WILL eventually get through day after day without being reminded of your AN.

[kaykay]

its been 3 years for me....some days i forget i had a tumor......then i have days that wont let me forget it.
just have to keep having a positive attitude! and take one day at a time!

[susierg]

Well things were starting to improve a bit.....then yesterday, I couldnt hardly walk without assistance.  Karen.... I think you might have something there.  The day before I had PT and felt really good.  He worked me a little harder than usual as I was doing so much better.  Maybe you're theory is right.  I had PT again today and spoke with my therapist about it and he said that you could be right too.  We worked extra hard again today, so I'm anxious to see what tomorrow holds for me.
I know that I have made some improvements and after hearing so many reassuring messages from you all, I'm  trying to be patient and look at the positives instead of the negatives.  My therapist told me on the days that I feel "Wonky", not to do my excercises as I get irritated with myself when I can't do them as well as I had been.  So, on those days, I take the day off and rest. I was supposed to return to work next week, but my Docs have agreed I need a couple more weeks of recovery.....and as much as I need to get back to work....I have to agree.
Thanks again to everyone!

[It is what it is]

Thank you for gifting us with your updates.  Please keep them coming. 

Karen