I'm Home, Surgery is OVER

[Omaschwannoma]

Frustration for sure in the post recovery period for me too.  I along with many of us had a longer recovery, but if you can grasp onto the "little" improvements, even if the next day they are gone or not up to par, shows you WILL recover. 

Don't fall into the deep pit of negativity, for some it takes more than the 6-weeks, perhaps you can return to work (don't know what that entails) as Marci did, but your functioning will be slower and the fatigue factor will rear it's ugliness towards the end of the day where home, couch, bed will be your best friend for awhile. 

Eyes closed for 5-10 minutes at work will help tremendously to "shut out" the world as your eyes/ears/neck and feet work overtime for you now to keep you upright.  So, be nice to your system that is working really hard for you by resting and understand why you are fatigued. 

Essentially you have to come to terms with the fact they took away your balance nerve and your body knows this.  You have to get used to the "new" you in your own way and time will help.  We/you are forever changed, but good news is you can get back to functioning almost 98%! 

May you heal FAST!

[wcrimi]

Well, it's a little over 3 weeks since my surgery now.   If I made any improvement over the last week, it's hardly noticeable.  I have gone on a few short walks around the neighborhood (accompanied) and got around fine, but I'm still a little wobbly/dizzy.  It's kind of a strange feeling that's hard to describe. It's partly balance, partly dizziness, and partly feeling like I just woke up and need a cup of coffee.  Not sure if that makes sense, but that's the best I can describe it.   

I also still have a congested feeling on the operated side. I think that may have improved slightly, but it varies from day to day.  Yesterday was pretty darn good. For awhile it almost felt back to normal. Today is not so good.   

My hearing remains the same. I would guess I have somewhere between 50%-75% of my hearing on the operated side.  It's also slightly muffled. However, I can have a conversation on the phone with the bad ear even though it's low and harder to make out what the person is saying.  I figured that was a good test. I usually just switch to the better ear after I test it.  I will have my hearing tested on 12/9 with Dr. Smouha at my 1 month visit. Naturally, I'm hoping it improves further, but if this is the best it gets that fine. At least I was lucky enough to retain some useful hearing.  ;-)

When I saw Dr. Post, he said I could drive.  However, he can't feel the way I feel and I know I am nowhere near ready to be behind the wheel.  It would be like driving with a few drinks in me.  This is one of the things that has me worried about the balance issue.  I have to drive to get to work. I'm not on disability or anything. No work, no pay.  I think they will allow me to extend my time off if required (I'm scheduled to go back 12/15), but I don't have unlimited resources to take too much more time off. 

If anyone can tell me how they felt after a little over 3 weeks (balance/dizziness wise,  driving capability etc..) I would really appreciate it.  It's hard for me know how my recovery is going relaive to other people and what I might expect going forward.  Does another two weeks of recovery sound like it may make enough difference that I could be ready to drive?  To be honest, I think I could do it now if I absolutely had to, it would just be a risk NOT WORTH TAKING.  That more or less describes where I am now.

Thanks Wayne

[cindyj]

Hey Wayne,

My surgery was the day after yours...from reading your post, I think I'm feeling just about the same as you are and from what I understand, we are really right on track recovery wise.  I took a walk yesterday and did ok, but it was very weird.  There is NO way I could drive right now...I was told I could drive as soon as I could turn my head both ways without getting dizzy - not there by any means yet.

But, please have hope!  It is my understanding that things may improve quite a bit within the next two to three weeks - slowly for sure, but improvement all the same.  Everyone is, of course, different and we heal at different rates, but I am hoping you will see much improvement very soon!  Know it must be stressful trying to figure out about getting back to work when you don't feel confident about driving yet.  Think as positively as you can and keep on walking as I believe this will hlep (both of us) with the dizziness.

Keep us posted and take care,

Cindy

[Omaschwannoma]

Wayne,

Have you been through vestibular rehab?  If not, you will want to do this as the exercises are specific to re-training the brain/balance system so you can turn your head from side to side without experiencing vertigo/dizziness. 

[wcrimi]

Hey Wayne,

My surgery was the day after yours...from reading your post, I think I'm feeling just about the same as you are and from what I understand, we are really right on track recovery wise.  I took a walk yesterday and did ok, but it was very weird.  There is NO way I could drive right now...I was told I could drive as soon as I could turn my head both ways without getting dizzy - not there by any means yet.

But, please have hope!  It is my understanding that things may improve quite a bit within the next two to three weeks - slowly for sure, but improvement all the same.  Everyone is, of course, different and we heal at different rates, but I am hoping you will see much improvement very soon!  Know it must be stressful trying to figure out about getting back to work when you don't feel confident about driving yet.  Think as positively as you can and keep on walking as I believe this will hlep (both of us) with the dizziness.

Keep us posted and take care,

Cindy

Thanks Cindy.  It might make sense for us to compare notes from time to time to see how we are doing since we were operated on at the same time. I feel better knowing that we seem to be at the same stage of recovery and are on schedule.   

The last couple of nights I had very mild headaches that were gone in the morning. What used to be a a very low high pitched sound in my ear before surgery (that's how I was eventually diagnosed) has turned into a louder kind of hissing sound (I'm hoping that's related to the ear area still being clogged and that it may eventually go away).

[wcrimi]

Wayne,

Have you been through vestibular rehab?  If not, you will want to do this as the exercises are specific to re-training the brain/balance system so you can turn your head from side to side without experiencing vertigo/dizziness. 

I don't even know what that is.

Can you give me any diection on how to get started?

[wendysig]

Hi Wayne,
Vestibular rehabilitation are exercies you do to improve balance/vestibular function.  These exercises can be done on your own or with a physical therapist.   If you would be interested in going to a physical therapist you will need a prescription from your neurotologist and referral from your PCP.  When you are looking for a place to go for PT, I would strongly suggest that you ask if they offer vestibular rehab and if they have  ever treated a patient who has had an AN.  Although I really liked the PTs I worked with and they did help me, I got a very strong feeling I was the first AN patient they'd ever had.  I had to push them to teach me more advanced exerciises than they originally had me dioing because they weren't sure how much I could handle.  If you would like to try doing some exercises on your own, I posted most of the exercises I've been doing under AN Issues on the "ready to give up" thread -- I think you might find them helpful.

Best wishes,
Wendy

[wcrimi]

Hi Wayne,
Vestibular rehabilitation are exercies you do to improve balance/vestibular function.  These exercises can be done on your own or with a physical therapist.   If you would be interested in going to a physical therapist you will need a prescription from your neurotologist and referral from your PCP.  When you are looking for a place to go for PT, I would strongly suggest that you ask if they offer vestibular rehab and if they have  ever treated a patient who has had an AN.  Although I really liked the PTs I worked with and they did help me, I got a very strong feeling I was the first AN patient they'd ever had.  I had to push them to teach me more advanced exerciises than they originally had me dioing because they weren't sure how much I could handle.  If you would like to try doing some exercises on your own, I posted most of the exercises I've been doing under AN Issues on the "ready to give up" thread -- I think you might find them helpful.

Best wishes,
Wendy

THanks Wendy.  I really appreciate it. 

[cindyj]

Hey Wayne,

Yes, let's do compare notes periodically on our progress!  I think my energy level is returning nicely, but the dizziness continues to be about the same - not too good.  I, too, am experiencing some pretty loud sounds, but assume it's all part of the brain adjusting and healing process.  This morning I had some pretty significant shooting pains in my ear...went away pretty quickly, though...

Wendy, I'm glad you mentioned where you posted those vestibular excercises - that was a great post and I want to try some of them, but I couldn't remember which thread you had posted it on.  I'm going to go see if I can find it right now.  Thanks!

Take care, Wayne, and keep us posted!

Cindy

[wcrimi]

Cindy,

We seem to be having the same sort of dizziness issue (at least similar). There is another thread called "wonky head" that you may want to read.  I think that's what we may be experiencing.

I am curious, did you have normal hearing before surgery and did you retain all or part of it?

[cindyj]

Hey Wayne,

Yes, wonky head it is!  I'm going to try to start those vestibular exercises that Wendy posted...

Regarding my hearing, it was very nearly perfect pre-op.  I certainly could not tell I had any loss - just the constant tinnitus.  However, I did have a translab, so I went into surgery knowing I'd come out being SSD.  My doctor said that given the location of my tumor, there would only have been a very slight chance to save my hearing using the other surgical methods.  He recommended translab and I agreed completely.  It is not as bad as I thought it might be, but certainly is strange.  I am holding off on a hearing aid decision til later in the recovery process. 

Hope you're continuing to improve each day as I feel like I am!

Cindy