Nice to be able to relate - 6 weeks post-op

[Valeriel23]

Hi Postie Family,
Just wanted to check in, I've been reading everyone's posts but havent written in a few weeks. So, this Friday is 6 weeks post-op for me.

Still *sigh* I can't see well. I have double vision. I can close my left (AN) eye with my hand or wear an eye patch and this helps to not see double but, it doesnt help with depth perception. I cant tell how far or close things are. Walking in the grocery store is exhausting! When people come at me, with carts etc, I just freeze afraid I'm going to run into them. Because of this eye thing I cant drive. I wasnt prepared for this. As a single Mom, not being able to drive for 6 weeks has been extremely difficult. Going to see an opthomolagist this Thursday, if anyone has specific thoughts or questions I could ask the Dr that would be wonderful.

I started physical therapy last week. I asked for a vestibular specialist which this facility does not have. I respected the therapist, extremely compassionate. Here's one thing that kind of hit me hard. He said "you've seen yourself for the past 5 weeks, and see your progress. Your family has watched you since the ICU and in rehab and they have also seen you improve." "I'm meeting you for the first time and I'll tell you, its great how positive and optomistic you are but, you've got a long road ahead" He continued "you're very unstable when you walk, you have lost much of your muscle tone (was in the hospital bed in rehab for 15 days) and you are not ready to be taking on tasks and being home alone yet"
Geez...maybe I was getting ahead of myself? I dont want to overdue it, which I think is what he was saying to me. I had at one point been attempting laundry and housework which, anything about the hip level doesnt bother me. But bending over really seems to give me a headache and make me dizzy. Does that happen to anyone else? how long does that last? I dont want to hurt myself but I feel like the only way to get back into normal routine is to push myself to do thing myself.

Opinions? Hugs to everyone, hope you're having a good week and thanks for all of the support!

Val

[Tod]

Hi Valerie, It sounds like you are doing well. I went back and looked at where I was at six weeks post-surgery. I had spent two weeks in the ICU and one night in a regular room and then home, so our experiences might be somewhat comparable.

I was still a few weeks from driving at that point.

My accomplishments were being able to walk about two miles at a time (with a cane), and play the Wii balance games for sometimes up to an hour a day.

I still had a bad drunkard's walk.

Grocery stores (or any store) with my wife was unpleasant and difficult, at best.

My vision was wonky enough that spending more than 20 or 30 minutes at the computer was difficult.

So, I think I am suggesting that you give yourself a break as you may well be pushing yourself too hard. It is good to push, but you really must listen to your body. Be both gentle and good to yourself. Your body has been through a lot and you still have some recovery work ahead of you.

-Tod

[CHD63]

Hi Val .....

WOW, it sounds like you have had quite a time with double vision.  I will be curious to see what the ophthalmologist has to say on Thursday.

Have you done any vision exercises?  I had double vision for a couple of weeks post-op, but not for six weeks.  Fairly early on I was given specific exercises to do.  One exercise was to write a big letter A, with a magic marker, on a sticky note and put it on the wall at eye level.  Then I stood back about five/six feet and attempted to hold my gaze on the letter while slowly turning my head left and right as far as i could before losing hold of the gaze.  Then moved my head up and down very slowly, holding the gaze.  At first I could barely do it one time super slowly.  I did this several times a day and gradually I could do it farther and faster.  Another one I did was to hold my head very still while following a finger with my eyes, very slowly left and right, up and down.  I had a lot of nystagmus as well as double vision so these two exercises were very difficult at first but the effort to continue them paid off.  Only do these for short periods of time, then rest your eyes.  Try to do them several times a day.

I did not drive for several weeks after surgery either ..... until I felt sturdy enough to try it safely.  Everyone is different in this regard.

If it is any consolation, even after nearly three years, I still hate the grocery store aisles or any long hallway, for that matter.  It really does a number on my visual perception of where left and right are!  (reminder:  I have no functioning vestibular nerves on either side so my case is a bit different than most)

Just curious about whether you have facial paralysis on your AN side?  That, of course, can affect your vision and your doctor should be alerted to this ongoing problem.  Was your facial nerve damaged during surgery?

Many thoughts and prayers.

Clarice

[Kaybo]

Val~
Hi!  I had a stroke n the table so my recovery was a bit different, but I didn't drive until WELL after I went back to work and that was at 3 months (pushing it!)...mine limited driving wasn't necessarily the sight problems as much as my reaction time.  I still have no depth perception however stores never bothered me!!  I guess I just love to shop!! 

I will say that my Dr kept reiterating that I would only get as better as I let myself and the more "normal" things that I did (that I had done before surgery) the better I would get.  I tried to do as much as I could but also listened to my body - some days I just didn't feel like it!

If you ever want to chat, PM me your number and I'd be glad to give you a call - I have unlimited LD in the US and Canada!

Good luck and cut yourself some slack - slow and steady wins the race!!

K   

[Valeriel23]

Hi

Thanks for the help everyone...its nice being able to talk (ramble) and be understood. Tod, very helpful...I will keep that in mind. Time, rest, patience, stay positive.

Clarice, I had some facial weakness for a week or so after surgery, that was noticable in my smile but I'd say that 95% gone now, left eye is definitely looking weird. The eyeball position (when I look in the mirror) is like at the top corner of my eye (by the nose) and I have to force a blink, which has become much easier, I was not able to get full closure before. I definitely get dry eye and have to put gel in it a few times a day. I'm insecure about how it looks but, compared to what I've seen and read from brain surgery posties...I am so grateful. I try to keep that in perspective. I do get upset thinking "when will I be able to see straight again" but, quickly put that into check with the reality that I can walk, eat, laugh, talk, take care of my kids and many other blessings.

K, thank you so much. I definitely have good days where I feel motivated and not so good days where I just want to sleep the day away or just not be dizzy for once.

Thank you all again, and I hope you are feeling well...I truly appreciate the advice.

[leapyrtwins]

Hang in there, things will get better.

Keep the faith!

Jan