Newbie in Houston

[leapyrtwins]

Pooter -

congratulations on your treatment decision and surgery date.

As far as post op recovery goes, everyone is different.  Here is my personal experience, for what it's worth.

I didn't have pain post op, but I took a lot of meds for nausea - it just wouldn't stop!  It was probably related to the anesthesia, my dizziness and balance issues, plus I had double-vision for a day or two after surgery.

I didn't have headaches - still don't - but others do.

I remember everything post op once I woke up in the ICU room - I don't remember waking up in recovery at all.  My kids visited me the second day post op - they wanted to come the first day, but I wasn't ready for them.  I thought I'd look "bad" to them, but with the exception of the huge, white, mastoid bandage wrapped around my head I looked normal.  I'm sure it was a scary experience for them though since they'd never seen me ill, in a hospital, etc.  I think my kids are older than yours, so you may want advice from someone with younger kids.

My balance issues could be compared to the "drunken walk" that many refer to on this forum - basically bobbing and weaving.  But the body compensates for balance issues and does adjust over time.  Walking helps.  My doc also gave me balance "exercises" pre op that I continued post op and they helped a lot.  I think after the first few weeks or so my balance had adjusted fairly well.  I remember walking into the doc's office for my first post op appointment and I was doing great.  I still have slight balance issues today, but nothing like they were post op.

IMO there should be no issues in waiting 4 weeks for surgery.  Many wait longer than that while they are researching their treatment options.  ANs are normally very slow growing - I am an exception to that - but I was just a "weird" case 

I had retrosigmoid and had a mastoid bandage wrapped around my head for a few days post op; I assume they use the same or something similar for translab.

Hope some of this helps you,

Jan


 

[Boppie]

Brian, I have a teaching degree and plenty of background with kids in my past.

My grandsons age 4 were old enough to understand big boo-boos.  They visited me in the hospital and seemed unimpressed with my bandage.  I had put a scarf around most of it. 

Kids are impressed with the "stuff", hospital snack bars, elevators, and beds that go up and down.  Parents and adult friends are the ones who are most impressed with the head surgery itself.  Some visitors are intimidated by the very idea of the opening in the skull.  Kids pick up on the facial expressions of adults.  I'd keep the worried watchers out of the room when my kids were there.

Kids just think, "Wow I see a big bandage".  The fewer details they get, the better.  I think children can handle the idea that you appear somewhat disabled in that bed and that you will need special consideration at home.  Older kids might ask lots of questions that call for truthful but not lengthy answers. 

Every child is different though.  If you have one who is fearful of new things, I'd allow him or her to stay in the family area and you walk yourself there to see them.  This would help the fearful child to see that you are up and about.

[leapyrtwins]

Boppie -

you are so right about kids and boo-boos, bandages, etc.

I forgot to mention, Brian, that you won't be bruised or anything that might upset your children.  Other than the big bandage, you'll look just like "dad".

Jan

[Mary 117]

Brian,
As you can tell by reading, everyone has different results. My experience was fine. Except for the day in ICU, I remember everything and really didn't have any "loopy" behavior. I didn't need any pain meds but again everyone is different.  I was walking laps on at the hospital for hours, as I'm not a very good at sitting still. I don't remember having any problems wearing glasses and after about a week I started wearing my contacts again, as it actually helped keep the moisture on the eye, which didn't blink very well for a while. I didn't have balance issues, just as many with larger tumors will tell, you because your body has gotten use to being off balance from the tumor.

It is surgery, so there are post-op issues but I found them to be very managable. I was touring the LaBrea Tar pits 6 days after surgery. I flew home to Montana less then 2 weeks after surgery and started back at work less then 4 weeks after surgery.

Wishing you well,
Mary

[Kaybo]

Brian~
My AN surgery was so long ago that I don't remember much, but we were concerned the other day about how my girlies would take me coming home looking like a prize fighter from my T3 surgery.  Mom had showed them the LAST picture on my blog (NOT the one w/ the bandage) and they seemed to be fine.  They have all 3 since seen the SCARY pictures, but they didn't seem bothered.  Just like Jan said, you won't have any bruising anyway!

K

[Boppie]

Brian,  I took one side piece off and took a large safety pin to prop the glasses on the bandage side. 

The big bandage comes off at the same time the belly tape comes off, before you come home (at any rate).  Think of your bandage as a plump gauze beret hung on your surgery side and down to the ear lobe.  That whole hat is wrapped and wrapped until it crisscrosses to the top of your head.  The bandage is a whole lot of gauze and sterile cotton that protects a not so large area.  Some refer to it as a half helmet.   

Wear sneakers to the hospital as these are grippy enough to walk the halls with.

My 2cm tumor came out in 9 hours.  It was a sticky one. Some tumors of the same size come out in 5-6 hours, very slippery tumors.

I had no nausea.  My tongue was sore when I woke up.  I didn't like eating at first because of it.   I hallucinated briefly after the first few anti swelling injections (steroids)  My husband said I recited my ABC's and mummbled.  I have spoken with others who had similar responses. 

[Pooter]

Thanks to everyone for the honest answers.  I can handle a "drunk walk"... been down that block a few times before, if you know what I mean.   As I've stated before, most of my anxiety stems from the unknown of what recovery will really be like.  I guess my original thought was spot on...everyone's different and there are a whole host of possible things but it all just really depends, but regardless of what it is I'll be able to make it through.  Now, the steroids thing is a bit scary.  I could be doing anything from reciting my ABC's and mumbling to breaking out into an American Idol solo to turning into the spawn of satan..  I've warned the dear wife and have given her the disclaimer that I cannot be held responsible for what I might do or say while in the hospital and under the influence of who knows what.  How's that for covering my bases?

As far as the kids go.  My 3yr old will probably be more impressed with the moving bed and perhaps jumping off a chair or couch in the room than anything else.  My 7yr old is bit more "street wise" and potentially more apt to be affected by things.  She's a smart cookie though, and we've already planned on giving her enough information to understand that daddy has been through a pretty major event (he's not just being lazy).  I think given that amount of information and being able to see that I'm ok will be enough to calm her.  I was more worried about looking like a prize fighter, as someone mentioned, and it being more than she can handle.  But, if that's not a factor, then I'll leave it there.

On a side note, I met with Dr. Trask (neurosurgeon) today and he was pretty cool, if not a bit on the "geeky" side.  We had a good conversation and I'm full of confidence in him and Dr Vrabec to take care of me, which I find to be very important that I trust them.  I've got pre-op testing on the way to being scheduled (sometime within the next week), and Pre-Op visit to the surgeon on 5/5.  Then surgery on 5/8.  I'm much more relaxed and confident now than I have been up til now thanks to all of you being patient with my quest for information.

23 days and counting... 

Regards,

Brian

[Boppie]

Brian, You will be sent home with a prescription for pain killers.  I took them for a few days and then tapered off with Tylenol Extra strenth.  I didn't like the woosiness that came from the big pain killers.  But for a few days you'll be glad to go back to sleep with them.  Your doctor will answer questions you might have if you need to call him from home.  Your ride home will be sitting up with a small pillow behind your neck.   You will appreciate a pair of wrap around sun glasses.

Hey, maybe other newbies are reading this and are going to copy you.   

By the time you are a postie, everyone at your house will think you are an American idol!  Don't worry, steroids are not truth serum.

[Brendalu]

Brian,
I had a lot of bruising.  I bruise easily, but like I said my head was swollen and I looked liked a well kicked soccer ball.  I hope you are like Jan and some of the others.  My grand kids weren't afraid, they just hoped I wouldn't stay looking like that!
Brenda

[leapyrtwins]

Brian -

don't worry, not everyone sings!  And you may or may not need pains meds.  Steroids are also sometimes optional - I had one dose post op for a slight facial nerve problem, but that was it and the problem went away.  Bottomline, as you've mentioned, is that everyone is different.  My best advice is be prepared for just about anything, but take things as they come.  Recovery takes time and will require patience - which was something that was hard for me.

It sounds like you have great confidence in your doctors and that's a very good thing.  It will help you go into this relaxed and feeling at ease.  Sometimes waiting for the surgery date is almost as hard as making the treatment decision. 

Hang in there,

Jan