My Surgery Story

[Nicole222]

I had the retrosigmoid cranio blah blah on May 9th , 2008.  My tumor was 2+cm (just smaller than a glof ball, so they say).   Anyway, I was in surgery from 7:30am-5:30pm where I went to recovery for an hour or so and then to ICU. My stay in ICU was for 2 days and then off to a regular room. The shaving of the hairline was minimal and unable to be seen when my hair is down.  The tumor was completely removed They say I am CURED!  They had expected to leave a shell on the facial nerve and maybe do GK at a later date. An MRI confirmed that it is totally gone.  I have had the best possible outcome I guess.  I do believe I have totally lost hearing on the left side and also my balance nerve.  My facial nerve was able to be preserved, though.  I had outstanding neurosurgeons Dr. Howard Chandler and Dr. Doug Green here in Jax, Fl.  My mom never left my side in the hospital and I am grateful for that.  My husband and family visited and took excellent care of my son while I was gone. 

I guess I began to feel somewhat human by the 3rd day--tons of vertigo, nausea, photophobia, and sensitivity to smells as well.  I pretty much flat refused to work with the Pt when she came b/c it was too much just to open my eyes---so I didn't.  I just acted like she wasn't there til she finally left   Sometimes I told her to go away, too   I'm not normally a rude person, but my head felt like it may explode and that I would vomit everywhere   It is true, though--you gotta open your eyes and try for that crappy part to go away.  I just had to do it on my time.

Things have gotten better day by day--it is now the 8th day after surgery.  I came home on the 7th day.  My temples are very sore--hurts to open my mouth just to take a pill and the appetite still is not back==but I'm sure it will be.  I hear things in my deaf ear like muted surgical instruments and it freaks me out--sawwing and buzzing.  It it's hard to stay awake for long periods--or focus on tv, computer, or read.

The thing that sucks the most is that I want to be doing all the things with my son, 21mos, that everyone else is.  I miss him and he is right here   I know that as days go by, I will be able to do more and more, but this is where I am right now.  My emotions are a bit wacky right now--laughing one minute and crying the next   But, hey.

I'm willing to answer any questions or talk on the phone to anyone with an upcoming date (or not).  You all are a wonderful support and the only ones who truly get it.

My eyeballs are killing me now--I hope this made sense.  Too tired to check for typo's, so please excuse them

[oHIo]

Nicole...Glad you made it to postie status.  The emotional ups and downs may be due to the sterioids as well as the fact you had major surgery.  May you continue to do well and have a speedy recovery!

[Jackie]

Hello Nicole,

Congratulations to your coming through surgery, so well, and able to share your experience so quickly! How very thoughtful of you to share all the data. May  I just welcome you back, and pray for your rapid recovery, so you may enjoy life again!
With sincerest good wishes, for a lifetime of happiness and freedom from your AN.

Jackie

[LADavid]

Hey Nichole

I know this came up on you so fast but I am glad things have worked out the way they did.  You did remind me of something that I had forgotten -- the blinding lights -- especially sunlight.  That does get better over time.  But you may need some heavy-duty sunglasses for awhile.  Someone on the forum said they went to a Harley Davidson store and got wrap-around sunglasses.  I found my Body Glove running glasses worked..  I think you said you were in Jacksonville -- watch out for your eyes.

Anyway, keep up your great recovery.

David

[robynabc]

HI Nicole  That is fantastic.  I know you don't feel so great right now but really it sounds like the steroids are really affecting you.  I suspect you will get dramatically better after you are off of those.  It really sounds like after your recovery from those you will have to get used to the deaf ear, but you sound like you had a great outcome.  That is really, really good.  It took my son Eric a little while to get used to the deaf ear  and he is going on a year out from surgery  and the deaf ear is practically not even an issue for him.   Peace and Love,

Robyn

[sgerrard]

Hi Nicole,

Good news! If you came through without a facial nerve issue, and the tumor completely removed, that is a very good result. All the other symptoms you are currently experiencing are temporary - you just need a few weeks or so to recover. It will take a little time get your balance back, and to get used to the SSD, but I have meet several people now who have done that, and they are functioning just fine.

When they set the fireworks off on July 4th for you, you will be feeling much better. 

Steve

[Catflower]

Nicole:

Your surgery story is nearly identical to mine.  I also refused to work with the physical therapist the first time she came.  Finally, I did agree to try and stand which resulted in a headache that made me think I was surely going to die.  A little extra morphine took care of that.  I also had the loss of appetite with severe nausea which lasted several days.  Even the look and smell of food made me sick.  My appetite finally did return, but it took a while.  I took a liking to orange juice and strawberry ice cream.  Wierd, but true.  The metallic taste in my mouth was my biggest problem with food, but it has slowly improved over time.

I know how desperately you want to get back to your "life", but you just have to listen to your body.  If it says rest then rest.  If it says sleep then sleep.  Despite the days you think you won't ever get better, believe me, you will.

I'm a year post surgery and awaiting the BAHA processor.  I had the implant placed on April 8 and am to get the processor on July 3.  I still have some balance issues though, but I do walk 2 miles almost every day.

Best of luck in your recovery.

Linda in WV

[Debbi]

Hi Nicole-

first of all - I am so glad you are healing well!  And, thanks for the detailed post.

I, too, had the surgical sounds - drilling and a buzzing that sounded like an electric hair shaver or clipper.  The drilling was REALLY loud for the first few days and definitely freaked me out.  The good news is that both are completely gone now. The only thing I get now is a little faint chirping noise, kind of like birds.  Hopefully yours will go away soon!

Just give yourself time to rest.  I have pushed it a few times, and then been totally exhausted.  Listen to your body...

Debbi - birds chirping in my ear...

[er]

Hello Nicole,

It is nice to hear your on your way to recovery. My prayers are with you.
I  also had the vomiting for about 3 days nothing seem to help. They finally used motion sickness pills, that was a blessing. I was also very sensitive to light so I used a wash cloth to cover my eyes while I was in the hospital, then large sunglass helped to keep the light out, and also so the air wouldn't get to my eye even though they place a gold weight so I could close my eye before I left the hospital. But it will get better!!! Make sure you get plenty of rest......
And your son knows you love him, you will be back doing things with him soon.
eve

[cindyj]

Hi Nicole,

Thanks for all the details on your surgery/recovery...great news that they got all of the tumor and no facial nerve damage!  Hope you continue to heal and let us know what's going on.  As with all others that have had surgery lately and kept us updated, it really is helpful for those of us still trying to decide on treatment...and, we all like to know how everyone is doing and coming along.

Take it easy - get plenty of rest, though I know it's hard when you want do all the normal things with/for your son,

Cindy

[leapyrtwins]

It will take a little time get your balance back, and to get used to the SSD, but I have meet several people now who have done that, and they are functioning just fine.

Nicole -

as Steve mentioned lots of people get used to the SSD.  If you turn out not to be one of those people, there are options - the BAHA or the TransEar.  If you get to a point where you want to know about either option, there are members of this forum who have a BAHA and members who have a TransEar, so please just ask us.

Jan

[cmp]

Thanks for sharing your story, Nicole, and welcome back! It is just wonderful news that the tumor was completely removed and that your facial nerve is OK.

Please remember that you're only 10 days out from surgery and don't push too hard! Rest when you need to, and don't feel guilty that you can't keep up with a 21 month old--even if you weren't recuperating from brain surgery, chances are that his energy level would still outstrip yours from time to time! It's more important to him than anything that you're back with him, 24/7 and tumor-free.

I had to laugh when I read that you were uncharacteristically rude to the PT. I'm also generally polite, and NEVER EVER use cusswords with strangers, no matter how mad I get, yet I remember behaving horribly to an aide who, on the 3rd or 4th day post op, was emptying the trash can in my room a little too noisily. At the moment, it was just the most unbearable sound, and I couldn't restrain myself from chasing her out!

[lori67]

As a nurse and a PT, I have to tell you that medical people totally understand that people are not themselves when in the hospital, so I wouldn't worry about being too grumpy - it's to be expected!  I personally have been punched, kicked..you name it - by people who under normal circumstances are very nice people.  I've gotten good at ducking and weaving over the years though!     I usually apologize in advance to the nurses for any misbehavior on my part, so they know I'm usually nice - but hospitals and drugs can just bring out the worst in all of us!  I am not, however, advocating that you should punch or kick any medical professionals, even though some may truly deserve it!

Nicole, it's hard to not be up and running around with your little one, I'm sure, but I have a feeling he's just glad to have Mommy home with him and he doesn't care if you're horizontal on the couch!  Let him burn off some of that little boy energy with friends and family for now.  I'm sure he'll still have more than enough left for you once you are feeling better!

Lori

[Jim Scott]

Hi, Nicole:

Thanks for making the effort to update us.  Although you're not feeling so great right now, you will, soon.  It takes a little time for your body to deal with the effects of the all the anesthesia you received, the trauma of the actual surgery and the emotional strain the entire experience puts on you.  As you noted, many of us have been there so we understand where you are right now.  As quite a few posters have already stated: it gets better.  Really, it does.  You'll be playing with Jordan in no time and this part of your life will be a hazy memory.

That the surgeons were able to remove the entire tumor and you suffered no facial nerve involvement is fantastic news!  I'm very glad for you, Nicole.  I trust that your solid support system at home and your determination to be yourself again will aid you in getting through this period.  That you're willing to talk to (or electronically correspond) with AN patients facing surgery is commendable.  Now, please get as much rest as you need.  We'll be here. 

Jim

[Sammict]

Hi Nicole

Thanks for taking the time to update us that couldn't have been easy.

I am so glad to hear that they got all of your tumor. I hope you start to feel better soon.


Sam