Post-op 5 weeks

[RadiantStar]

Hi Everyone!  Glad to have found people I can relate to!!!  After reading a few of your post I am both inspired and glad to have found the way here. 

Some of my questions have been answered just by reading your post/replies.  Thanks.

November 28, 2005 I had 3.1 AN removed via Translab.  All went well, the hospital stay was 5 days, and I was up walking around on day 3!  Have found that recovery, at times is one step forward, and then wait and see.  On Christmas Eve and Christmas Day, my right eye was blinking on its own, then the day after, it quit again!  I am an avid reader, and this probably was scarier than most things so far.  After reading other's posts, I see it isn't that uncommon.  Sensitivity to bright sunshine, wind, being in "the light" does irritate my eyes now, I have to walk in the shade of trees, or with the sun to my back or I can't see very well. 

When I came home from the hospital, I was told to sleep basically sitting up in bed (with 7 pillows), how long does that go on???  Sleeping through the night, doesn't happen, it's 2 hours of sleep, then wide awake through the night.  I've tried staying up later, going to bed earlier, resting in the daytime.  I'm concerned all night that I'll have the CFS leak they warned me about and when I do sleep, it's on my mind, my lower back and hips are tired from the "sitting"position.  Is there any helpful insights you all can share with me?

I also see that the funny noises in my head are just that...sometimes the noise is noticeably loud on the surgery side (right), then at times especially after the surgery, there the loud "thump-thump" on my heart (I knew I was alive!!  LOL) and that too, comes and goes for no apparent reason.

Balance, walking is getting better consistently it seems, no quick turns yet...I walk on a treadmill at home and outdoors on cloudy days (only a few of those in South Texas).

Before surgery, I had a pretty regular Yoga Practice, and since surgery I been SCARED to do any and all exercises that require forward/back bends, lying flat on the floor, or neck/head rotations...
The ear doc who assisted in surgery, said sure do your normal activities, to include Yoga, but again I frightened or stuck on the CFS leakage...how long does that remain a factor in post-surgery?


Before surgery, I was totally at peace with the decision to have this done, and I still am grateful to be alive!  Man, this is really a whole different journey than anything I've ever experienced in my life.

Thanks for reading and hopefully replying.

Kathleen
 

[Boppie]

I am about 3 weeks post op, Translab 2 cm.  At 15 days my doctor said I didn't need to continue sleeping so high up.  Sleeping flatter down on your back with a good supporting head pillow is sooo much better.  Of course I continue to think about the possibility of leaks but I have checked with my doctor about strange tastes, etcetera and he keeps reassuring me this is part of the late onset paralysis of my face.  Dry eye, absent blink, and weak smile appeared 12 days post op.  I am confident these weaknesses are improving day by day already.  I use lacrilube ointment all day and night...Don't need to tape my eye as I have been able to close it completely all along.  It just blinks weakly.  I bought a pair of wrap around sunglasses for out of doors and these help trememdously to keep the bright light away and the wind away from the side of the eye.

I was told to be cautious about the leak thing, but that the further from surgery I get without incident, the less I will need to worry.  I bend forward several times a day to test and then just go on and find the "joie de vivre" of the day.  I live 115 miles from my doctor but he tells me in the case of a CSF leak, I'd need to phone him.  A trip back to his office could occur within a day, reasonable time, but not a racing emergency.

I continue to hear head thunder sounds and have a few sore spots on my head.  My appetite is great, so I just ignore the funny tastes and chow down.  I move around all day and sleep 8 to 9 hours at night.  This better sleeping routine began for me as soon as I kicked the tilted bed and lounger chair.  I'd continue to use a good pillow under the head for a while though.  Sleeping without a pillow seems to make my skull hurt and I think it might make pressure.

If something is disturbing your sleep try covering your eye.  It might be staying open a bit.  Dry eye will WAKE YOU UP!

Please remember that this is my routine so far.  If you have no other complications, perhaps some of this helps you.

[Crazycat]

Hi Kathleen,
              Yes, I remember that, while in the hospital, I was told that sleeping at an inclined position was beneficial toward healing. Since I've been home - since Oct. 11th -  I've been
sleeping pretty much flat.  I've also been lifting weights and jogging 2 miles a day!I had a 5cm x 5cm AN removed Sept.21. I'm getting my strength and stamina back!!

Being a musician, I'm especially thrilled at having to have my left-side acoustic nerve ripped out of my head - still playing though.
   As far as the C.S.F. problem, that was presented as one of my major difficulties. I had two
surgeries: the first being a shunt installation to drain  C.S.F. bulid-up that will stay in place permanently, and the second surgery,a month later, being for the removal of the beastly growth itself.
   The first surgery had to be performed twice because the shunt didn't hold in position correctly. I was so out of it I can bearly remember the ordeal, except for an episode of projectile vomiting and a rushed, late night CAT Scan. We also discovered that I was highly sensitive or maybe even allergic to morphine after it put me in a minor coma.Yet it all worked out okay.
 I'm not sure whether if your problem with C.S.F. drainage or leakage would or should be  treated the way it was in my case - with a shunt.


            Take care, Paul

[Joef]

   I think after 2 weeks your safe from a CSF leak. I never sat up! the first 1 week was in bed sleeping!!! but I was told not to hold sneezes in for a couple months, it creates to much pressure if you do, and could start a leak.
 
  Yeah the sun light .. I basically did not drive for 3 months not because I was off balance, but because I was blinded from the sun! It does go away .. at 5 months now, I still have some facial palsy .. but its getting better all the time!!

[RadiantStar]

Thank you all for your input, and suggestions.  It is just great to be able to see the computer screen for a change and know others are facing some of the same challenges.

The more I read here the more I learn.  Thanks again!

Kathleen

[Kathleen_Mc]

Kathleen: I was NEVER told to sleep on any number of pillows and have slept on only two, both post-op from my orginal tumor resection in 1990 and last Sept. when I had the regrowth removed. Also I was never told to refrain from light exercises such as bending and that of Yoga nature, just to avoid picking up heaving objects and heavy housekeeping like vaccuming. Just a few words of feed back for you. I am unsure of the length of time you have to worry about CSF leaks. Kathleen