How long before I feel like me again

[Chances3]

Hi All,

I've tried to make it a habit to log in and read the new posts.  I have even replied to some, giving Newbies encouragement.  Well I'm looking for some today.  I'm 9 1/2 months post op from a middle fossa approach.  I have a lot to be grateful for, I have full use of my face and the ear on my AN side works pretty good, although I have had some loss of hearing and it feels like I have a cup over the ear.  I still struggle with balances issues and visual movement when my head is moving around.  My surgeon has told me that I am still in the recovery phase and to be patient.  Well to be honest, I thought all would get back to normal a really long time ago.  Could all of you wonderful people weigh in?  Is there more recovery ahead for me?

Thank you everyone for all your valuable time, and for sharing.

God Bless.

[Jim Scott]

C3 ~

You pose a relevant question that all AN patients ask at some point. 

Unfortunately, there is no easy, glib answer to offer in response.  That is due to the fact that every AN patient has a slightly different recovery experience with a lot of factors involved, making a straight answer , e.g. '12 months' impossible.    I find it refreshing that you're cognizant of your good fortune in not experiencing any post-op facial paralysis and that you accept your hearing deficit with some degree of equanimity.  The balance issue is almost always a tough one.  Even with lots of time and perhaps, therapy, your 'normal' balance may never fully return.  This is a reality that must be dealt with.  I had a great recovery and at 9 months, thought I was close to being totally recovered.  However, a year later, I realized I was even better.  Specifically, my sense of balance had improved somewhat.  I consider my balance to be approximately 80 - 85% of what it was prior to my AN manifesting itself.  Today, 5 years after my surgery and radiation, I do feel that I'm as good as I'm going to get, which is pretty good, in my opinion.  I can walk up and down stairs without any need for a handrail.  I can ride an escalator without needing to hold the side rail.  I have no trouble driving, day or night, including on the interstate.  About my only balance 'issue ' is that, if I stumble, which is quite rare these days,  I cannot easily regain my balance and have to grab anything close by to right myself.  No falls have occurred but I'm aware that this remains an issue for me so I'm relatively careful, although not to the point of being fearful about it.  However, that is my experience and doesn't necessarily make it a template for other AN surgery patients.  Considering how well I've recovered, I wish that it were. 

My advice is to push yourself by walking on uneven surfaces and doing things that require some degree of balance to help strengthen your natural equilibrium.  AN surgery recovery  can be glacially slow (or seem to be) but with time, some work on your part and lots of patience, you'll likely improve.  Please try to stay connected to these forums and let us know how you're doing in your recovery.  Thanks.

Jim    

[JAndrews]

I had the wonky head feeling for a long time. I don't know if it was a visual issue but if I turned my head to fast or looked down to fast I would get the sensation that my eyes were unfocused. I dont think it was my eyes..I think it was the wonky head feeling. Give yourself some more time...you will feel normal again:) About a year or so

[Rivergirl]

My surgeon said it will take months or up to a year to feel better, when I told him at 6weeks about some things that were better he said that was good most won't tell him positive things until a year.  My advice is to keep your spirits up so that doesn't pull your recovery down.  Have you had vestibular rehab? I am going now still and it is helpful.

[Tod]

I'm going to do something rare, for me at least, and disagree with Jim. There is glib answer (more on that in a bit).

First though, I want to echo his suggestion that you push yourself by walking more, especially on uneven surfaces. Gentle hiking trails can be very helpful. The body learns by doing and reacting to what it does. The more you do, the more it learns. Get plenty of rest, and push yourself gently.

Rivergirls' comments also strike home. About six months into recovery I started making a progress report of improvements and deficits to take with me to follow-up appointments. My neurosurgeon's nurse was pleased and surprised (and it didn't click until later why) that I had listed the positives. I encourage you to make a list and track your progress. Give yourself honest assessments that prove to you that you are improving. One of the things I did was to push myself to be able to juggle up and down a flight of stairs without a single dropped ball.

As a friend encourage me, I encourage you: Don't focus on the few dozens of things you can't do. Focus instead of the thousands of things you can do.

Now for the glib answer. Why do you want to feel like "me again" (of course I mean you...not me, I think most people, tumor or not, would be lucky to feel like me). Were things that wonderful and perfect that you had no complaint? There will be a NEW YOU. It might even be improved. The new you is based on new experiences from which there is no going back.

Embrace the new you. Keep doing the hard work of recovery. For most people, it seems to get easier. I am about 18 months out from a very long surgery and I am quite wonderful. Not perfect. Not who I used to be. But in many ways better - inside and out.

And quite seriously, I feel much better than I did presurgery. I would have to go back several years to feel as good as I do now.

I trust you will eventually feel similarly.

-Tod

[leapyrtwins]

Everyone recovers at a different rate - and some recovery milestones take longer to reach than others.

IMO, at 9 1/2 months post op, you aren't done recovering yet - and that's not so unusual.

Hang in there; I know it's tough at times.

Jan

[Syl]

Chances3:

Even after 3 years, I continue to notice improvements in how I feel, with my balance & just in general. It took me over a year to resume sleeping comfortably on my right side ( AN side) or to stop using a night light because I couldn't tell which way was up in the dark. Two years passed before I could sleep straight thru the night. 

My wonkihead stayed with me longer than that. Every day at the end of the day, especially after work, I felt very wonkiheaded. Fridays are especially busy at work. As I type this, I feel a bit tired after one of those typical Fridays at work, but no wonki head. That is the major improvement which has allowed me to feel like the old me.

What I had accepted as my new normal was only temporary--a long temporary, but temporary nonetheless. My head feels clear now & I have more energy.

Right around my 3 year anniversary, my ability to whistle improved noticeably. Driving also got easier, especially making those left turns.

As time passes you will find the improvements are less noticeable. But be patient. Our recovery is a long one.

Syl

[painter]

At 19 months I am totally confounded.  At times during the last year I felt much better than I do today.  At times, like a month ago, I thought I was the worst I have been since surgery.  My head and sinuses felt totally full and I felt numbness down my neck and face.  Whenever I put my head back or in a jutted out position I go so wonky I thought I would pass out. My eyes felt like all the blood in my head was rushing toward them making it difficult to focus when I moved my head around. I got stressed which let to panic which made me feel even worse.  I was so concerned that I went to the emergency room.  Now after dozens of tests and thousands of dollars later, nothing has been determined to be the cause.  What I learned is to keep up with vestibular therapy exercises daily, walk a lot, and do things that prompt the dizziness until those prompts are less noticeable.  After all this time I am finally having to deal with the fact that this is probably going to be as good as it gets.  So I need to embrace what I can do and not look for false hope that things will get better.  It's like a roller coaster, some weeks are good and some are not so good.  A log is a good idea, and I'm now rating my wonkiness three times a day so I have a good baseline to compare in the future. 
We're all in the same club, and my hat is off to each and every one of you for hanging in there and going through all the times of uncertainty.  I think that's (the uncertainty)  the worst of it.  Once we accept that we have a new and slightly different life with new limitations the better we'll be.
My best to all you
Painter

[CHD63]

Hi Chances 3 .....

Weighing in here with my thoughts.  I can thoroughly empathize with what you are going through and it is not fun!

After my first surgery in February, 2008 it was determined that I have no vestibular function on either side  (due most likely to either my now three brain surgeries or the massive radium treatments I had as a teenager).  Therefore, I will have balance issues the rest of my life.  I now have to depend totally on my vision and my sensorineuro motor systems to maintain balance.  (As my audiologist said, you have lost your primary balance system and are operating with only the secondary and tertiary systems.)  I was in vestibular rehab for months following my first surgery.

What I have found are these things:

1) walking is the absolute best exercise to assist the brain in knowing how to keep us upright.  Try walking up and down the hallway in your home, where it is safe, and turn your head back and forth side to side as you walk and then move your head up and down as you walk.  It truly does retrain the brain.
2) for gaze stabilization, write a letter A on a sticky note.  Place it on the wall at eye level.  Stand back about six feet.  Focus on the A and slowly move your head back and forth side to side while maintaining your gaze on the letter.  Then do it slowly up and down.  Increase the speed of movement as long as you can hold your gaze.
3) try to limit the amount of caffeine and alcohol you ingest.  Both of these things mess with your balance systems.

As with any other exercise, the more you do them, the more helpful they will be.

You may benefit from some therapy sessions with a trained vestibular therapist.  He or she can give you many additional exercises to do ..... plus evaluate exactly what is causing your specific balance problems.

Best thoughts and let me know if there are any other ways I could help.

Clarice

[Chances3]

Thank you everyone for weighting in.  I have read many posts on this site over the past few months.  Most of you who have replied are my heroes, and you have given out so much information and encouragement to so many people here. 
Clarice, let me say that you're an amazing person with such a wonderful attitude.  I don't have anywhere near the problems you have. 
Tod, to answer your question about feeling like me again.  I am a very physical person, prior to surgery I was running 3 miles every other day and working in a gym.  I've tried running, it's too disturbing visually.  But I am thinking of getting back into some gym routine.  In addition as crazy as this seems, I used to play ice hockey as a kid, I'm thinking of going skating at my local ice arena - but slow and cautiously in the hopes of building up my legs and challenging my balance.
For everyone else, thank you so much for all your encouragement and advice.  I did take vestibular therapy, and I will heed the advice here and go back to my exercises.
Thanks again, and I will keep you posted on my progress.

God Bless!

[Brewers7]

Chances3.
     Just saw your post for the first time.  I am an old runner myself.  At the time of my diagnosis, I was running 5 - 6 miles a day and more on Saturdays.  I started back last fall (2+ years post op).  It has been very slow, but I am now back to 2 - 3 miles every other day.  I am still very slow but I hope to work on my speed and distance more when it cools off some.  In the meantime, it seems to help my balance and mood.  I feel like I am getting some of my old life back.  You are still in the early stages.  I am sure that you will continue to improve.
Susan

[Tod]

Chances3,

I was able to run again about 9-10 months out and maintain that for almost three months until the synkenesis took over and almost completely closed my left nostril. I couldn't (and still can't) get enough airflow to run much. But I can hike and mix some sprinting in with it. I'll settle for that for now. From 2003-2005 I was running (very slowly) marathons and ultra-marathons and then my body just kind of shut down and I didn't understand why - now I do.

I still intend to a do a hundred mile race...I just will have to approach it differently. 

Whatever you do, don't give up trying. Walking is good for all of us, post-surgery. And perhaps race-walking might fill the bill now? Your head stays steadier than it does in running and it might be easier to build up to.

Just a thought....

-Tod

[Chances3]

Thanks Tod,

I appreciate the encouragement, it really helps.

When I put my original post up, I was getting a little down, which is totally out of character for me.

But the posts from you and the other senior members was all I needed to get me back on track.

To add to that, I'm actually having some really good days this week.

All the best !!

[Syl]

I also must share with you that I am not afraid of sneezing or coughing anymore. Every time I sneezed or coughed, I felt like I got smacked at the back of the head & neck. It was so painful that I was getting the flu shot every year. I couldn't imagine sneezing & coughing all day & all night long for days or even weeks when one sneeze could be so painful. I don't normally get flu shots because I have some issues with them. I don't think I will be needing the flue shot this year.

The painful sneezing & coughing were another one of those post-op side effect that I accepted as my new normal. It took almost 3 years for me to get to this point.

Hang in there.

Syl

[Tod]

Chances3, I think it is the rare person on this forum that doesn't feel down from time to time. I am glad you are having really good days this week. Focus on those. I strongly believe that attitude makes a very real difference and that the more you can focus on what is good (or at least, not bad) the easier it is to have a positive attitude.

I hope everyone has a great day,

-tod