Country Mouse visited the Big City (aka AN surgery in Los Angeles)

[arkansasfarmgirl]

I have never been so glad to be home in my whole life.  California can KEEP Los Angeles and all that traffic.  Yuck.

Just thought I would post my surgery story for all to peruse.  I had a trans lab done with the House Ear Institute at St Vincent on November 19.

As it turns out, I am one of the very special ones whose tumor was not a true AN, but a facial nerve neuroma.  Lucky me.  It was also apparently exceptionally large.  As one of the docs put it, he's been doing this for 27 years and my tumor was one for the record books, both for its size and for the lack of complications for the size it was.  They couldn't tell me just how big it was, but it was larger than the 4.5 cm x 3.6 cm that was expected.  100% of it was removed.

I can't remember alll the names of my surgical team, but it was Brackmann, Schwartz, L-something, Bessin (sp?) and Stefan.  My 6-8 hour surgery turned into 11 hours by the time they got that ginormous thing out and did the facial nerve graft.  Amazingly enough, the paralysis from cutting the facial nerve is the only real complication I had.  And even more amazing, I am getting movement back already and it's only been 2 weeks.  I was told over and over and over again how fortunate I was to have come through things so well, so I guess it must be true.  I can tell you that my eye is driving me insane though.     It took a couple of days to get my balance back, but I feel normal 99% of the time and am not having any problems from that.   No problems chewing/swallowing/talking, etc.

It's amazing how my previous eye problems (nystagmus) have gone away, my neck problems went away immediately, and I have been dreaming constantly.  My head feels kind of empty now though.   

I do have a couple of minor nagging things.  One is I got blood in my spinal fluid and am still ouchy from that.  The other is my right hand swelled over my ID band and I got pressure sores and nerve damage in my hand.  It's just surface on my thumb and the bottom of my index finger, but it's very annoying.  Dr Stefan said it should heal.  I also have a numb spot in my left foot, I guess from being in restraints for so long.

BTW, will I ever feel my left ear again?  As far as I can tell, I don't have an ear unless I reach up and touch it with my hand.  LOL  Very strange feeling.

My 3 year old son is very helpful--he lifts my mouth for me when I smile so I can smile with both sides.     And my baby will be 4 months on December 7 and is still a breastfed baby.  I'm so proud of myself that I managed that.  It was NOT fun pumping while I was in the hospital, especially 2 am in ICU, but it was worth it.

Thank God I got through this.

Vonda

[sgerrard]

Welcome back, Vonda.

You have certainly had an interesting experience. "Larger than the 4.5 cm that was expected" is not the sort of news anyone wants to hear. You seem to be doing remarkably well, though, and to have recovered some of your feisty spirit as well. I think you will be dealing with facial movement and that eye thing for a while, but the other stuff sounds like it will clear up soon, including the numbness. Based on other posts here, the eye issue will probably be the most irritating thing.

You sound well, even though that is hard to believe after going through all that. I hope you manage to take it easy, rest a lot, and give your self some time to recover. You certainly seem to be taking an upbeat attitude, which will serve you well in the weeks ahead. Enjoy the company of your two little ones, and take care.

Steve

[yardtick]

I'm so glad your surgery went so well.  I also want to welcome you to the very small and very rare facial nerve neuroma club.  There are a few of us on this forum.  I will one day need a nerve graft.  So far my facial nerve was debulked.

Your 3 yr old son is adorable and I am so happy you are still nursing your baby.  You have had an early Christmas present I'd say.  Continue to heal, listen to your body and rest when you have to.

God Bless you and your family,
Anne Marie

[Cheryl R]

Vonda, I am very glad to hear you are doing as well as you are esp with such the large facial neuroma!       Mine was 2cm and done 2 1/2 yrs ago.            The ear will be very numb for a long time,maybe a year and then slowly have less numbness as the nerves around it take over.     Mine has not come back all the way but is much less.          It was very annoying to have as I have been super lucky and not had facial numbness.       So many people do so am surprised I haven't.   
I was told it would be 8 months before had any improvement of the face.       My eye closed earlier than I thought it would.   The face kept on for months past the 8 mo time but has never became all the way normal.       I am just glad for what I do have.
           Keep us informed how it goes for you!                           Cheryl R

[mrgarlic]

Greetings farm girl, I was in the next room. My surgery was on Nov 20th with the same Drs, How much will you pay me to not show pictures of you in ICU . I was the 67 year old guy with the mohawk hairdo. I did see your family many times and you and I did talk once. My surgery was also very successful but not nearly so complicated as yours. Mine was also no an AN but a Trigeminal instead. I am back in Oregon and doing well.,,,,,,,,,,,Take care,,,,,,,,,,,,,,,,Larry

[Omaschwannoma]

So glad all went well for you!  I'm shocked by the size of your tumor and very glad they got it all. 

You seem to be on track with your healing and sounds like you are dealing well with facial nerve trauma/palsy.  The fact you are able to focus your eyes, type and think all at once to post here says much about how well you are doing. 

Your son is very special to help you out with your smile!  You must be exhausted though dealing with a major surgery, arriving home, and small children!  Once again your story reminds us how each case is "special".

Rest, rest, rest. 

[cindyj]

Hey Vonda!

I left LA the day you had surgery (was pretty glad to leave also).  Wow, what a tumor - sounds like you are indeed "lucky" to have come through so well...and you're here updating us already!  That's much more than I was able to do so soon - and you have those little ones - amazing.  I also have some odd nerve things (damage, I suppose) in my IV arm and my left foot...I assumed it would just go away eventually, but glad to hear Dr. Stefan confirmed that for you. 

Take it easy (as much as you can) and let us know how things go.

Cindy

[CROOKEDSMILE]

Vonda,
I am so glad that you made it through the surgery. I am also very sorry about the facial paralysis. I, along with many others on this forum, also have facial paralysis. I will say that in the first few months of dealing with it especially the eye issues I was pretty worn out by it all but 15 months after surgery I am finding more ways to cope. It is not easy I will not lie to you. Dealing with self image issues is the pits and looking in the mirror to see a new face can be quite shocking. We will be your support. I could not have made it without these fine folks on this forum. I still have down days but I know that God is there to pick me up when I feel like I can't muster the energy to deal with paralysis issues every single day! REMEMBER.........you are still YOU. Outward appearance does not change the person that your husband, children and family care for deeply and love. You may cope better than I did and I pray that you do but do know that some days will be worse than others. Don't be afraid to talk to us on those bad days and we also love to hear the good stuff. Sounds like right now you are doing really well. And it also sounds like you are really BLESSED to even be alive with the size tumor that you had. I live in Arkansas too and if you ever come to Little Rock let me know. I have 2 little boys who would love a play date.
Angie

[JulieE]

Hello Vonda,
Glad to hear your surgery went well, and I'm glad you're recovering fairly quickly!  I'm also very proud of you having pumped to maintain the nursing relationship throughout this rough journey!  I also read your MRI  post about the Galadium and it reminded me of 7 years ago, when I was trying to find the root of some mystery symptoms (probably caused by this tumor) I was diagnosed with Lyme's disease and told to crash wean my baby to go on a heavy antibiotic course.  I remember the same feeling you had (my friend  called it the Tigress ) and thank heavens for La Leche League and my Vet (his daughter actually had Lyme - contracted from a different county), I kept the confidence to keep nursing.  All your diligence will be worth it - mine hardly ever get sick!
All the Best from one country mom to another,
Jules

[hruss]

hei Vonda!
i am so glad that you overcame everything!! welcome back!!

My tumour was as big as yours but it was an AN. They did not cut the facial nerve but it was traumatized and it cannot move now. Doctors see some good points of its improvement but I can;t see the obvious change!
I know i have to wait and do my exercises. Are you doing some exercises for your face now? I was 10 times in row to massages of my face and after Christmas will go again!!

It is very good that preserved your high spirit!! We should not lose it no matter what!!

All the best to you and your family!!
Hrissy

[calimama]

Hi Vonda,

Glad to hear that all went well despite the unexpected... that it was not an AN after all?!

I guess they didn't know that it was a facial neuroma til they went in? So I guess they just go ahead with the nerve graft (is that where they use a nerve from the neck?) cuz they have to cut the facial nerve? How much tone/movement do they expect you will get back with the graft?

Is your hearing ok? I can't recall if you had problems with this. I hope the feeling in your ear comes back. I can feel my ear, but can't hear with it, so it's just for show!

Great that some of your other issues have cleared since surgery, they got it all and you are back with your little ones.

Thanks for the update and hope each day finds you doing even better.

Trish in Toronto Canada

[krbonner]

Vonda,

It's great to see your spirit shine through in your post! 

I also had a pressure bruise on my elbow from being still for so long (11 hours under anesthesia).  It damaged the ulnar nerve running down my left arm and made my ring and pinky fingers on that side numb.  It took about a year, but I now have 99% of the feeling back.  It just takes a very long time for nerves to regrow.  Hopefully that will hold true for you, too.

You son sounds to amazing.  And kudos to you for pumping in the hospital.  That shows a true commitment, and I know you'll cherish being able to continue nursing as you recover.  It's amazing how our kids help us get over these hurdles, isn't it?!?!?

Katie

[Jim Scott]

Hi, Vonda:

Thanks for the very encouraging update!  I'm so glad to learn that you came through the surgery so well and with few post-op complications, considering the size of the tumor that was removed.  Apparently what residual complications you have (the swelling in your hand, etc) will soon resolve.  Your doctors telling you how well you've done reminds me of the kind of things I was told, post-op.  Of course, I just assumed that I would be fine, and thank God, I was. 

Big city life is an acquired taste and if you aren't used to it, the city can be stressful.  For others, country life can be stressful because it is quiet.  It's all relative to what you're used to...and as Dorothy Gale famously said (in the movie 'The Wizard of Oz'): "There's no place like home". 

That you managed to nurse your infant while getting through this surgery is impressive and speaks to your strength and determination.  The mental picture you paint of your 3-year old son lifting your mouth 'so you can smile' is exceptionally poignant and affecting.   Thanks again for your excellent post.  I know that I join many others in wishing you a swift and complete recovery. 

Jim

[msmaggie]

Wow, Vonda!  I don't blame you for wanting to pack up and go home.  What an experience you have had, and trying to keep your baby fed on top of everything!  I'm am also impressed by your "true grit."  You sound like you are doing really well, all things considered.  I'm glad the other things that were bothering you before surgery cleared up as a result.  Our prayers and good thoughts are with you as you move on from here.  Keep us posted on your progress.

Priscilla

[wendysig]

Vonda,
Sorry I'm a little late in coming to this thread -- don't know how I missed it.  Congratulations on having such a good surgical outcome!  You sound like you're doing just great and hope things continue to improve quickly, but don't be too surprised if you hit a plateau at some point -- you heal very quickly at first and then things start slowing down.  Improvement does continue, but a a slower pace.

Wishing you continued god healing,
Wendy