I'm new here...and a new mom

[HeadCase2]

Hi Vonda,
  I thought I would comment to your balance questions.   It is a little hard to predict how your vestibular system will react after surgery in regards to recovering completely back to normal (pre-AN) state.  Some have reported that treatment improved their balance.   Your brain is plastic enough to relearn balance after losing vestibular input from one side.  And from what I've experienced and read about, the relearning happens more successfully after losing vestibular function on one side completely (from surgery), rather than vestibular function that may be intermittently affected by the AN (pre-surgery).  Ask your doctors about your balance issues, they're the experts.  Many people also attend some Physical Therapy for Vestibular Retraining, which can help speed along the relearning process.
  Since you have been experiencing some balance issues, your brain may already be compensating and relearning.  So you may have less balance issues post surgery compared to someone who has had no balance issues pre-surgery.  This is good.   Since AN is often growing on the vestibular branch of the 8th cranial nerve, the vestibular nerve is often cut during surgery.  For someone who has had no balance issues pre-surgery, and the brain hasn't had a chance to compensate, this means that the brain is going to receive confusing vestibular input immediately post surgery.  Because of this, it's not uncommon for AN patients to experience dizziness immediately post surgery.  And it can take days to weeks to relearn balance enough to walk unaided.  Hopefully for you this won't take as long, since your brain is probably already relearning balance.
  Hopefully you'll be able to continue your horseback riding.  I continue to play basketball after AN surgery.  I can't tell you that it is completely the same as pre-AN.  My "balance reserve", how quickly I can move without losing orientation, is perhaps somewhat reduced. But I still enjoy being out on the basketball court and competing, and no one else seems to notice any difference.  Other AN patients I've talked to still run, ride bicycles, etc.
  Good luck with your AN treatments.  We'll be thinking about you.
Regards,
  Rob

[mimoore]

Welcome Vonda,
You have come to the right place, I have found great support in a wonderful group of people who truly understand. I have found that any concerns I may have are answered so quickly (much better than when I call my doctors office). I can't do without my new AN friends - Welcome to our great group! 
I am experiencing complications from my surgery. I am deaf in my left ear and I have facial paralysis.Was I devasted? Oh yeah! Did I cry? Oh yeah?  I certainly did not want it and tried hard to make a deal with God. I promise to ..... please don't let this happen to me.  I thought when the doctor told me that I may experience facial paralysis that he was just covering his butt, like this or that risk may happen. I kind of brushed it off - be prepared ANYTHING can happen.
I didn't have a choice. I am fairly attractive or I guess I was. My husband constantly tells me I still am the most beautiful woman in the world. I am alive and thankful I am able to enjoy my wonderful husband and my beautiful children (I have three daughters). Guess what life goes on and sometimes you don't get to choose your outcome. Be strong. Prepare yourself, research. Read old posts. Guess what you might not have any problems at all.
My husband always joked (prior to surgery) that he would put a fish hook in the corner of my mouth and string it over my ear and I could pull it to smile if I did experience facial paralysis. It is how we dealt with it by laughing a little.
Good Luck to you - ask lots of questions.
Michelle 

[Omaschwannoma]

Put your fears to rest regarding your face as whatever comes your way you will learn to deal. 

In trying to deal with "the worst case scenario" for your own face, focus more on how you would feel if one of your loved ones or friends were hit with facial paralysis.  Your love would come forth and you wouldn't even notice the outward appearance.  You notice more a persons inner being and the outer shell goes by the wayside.  This will hold true for you with those that love you and those that will come to know you. 

Be brave, know that how you once felt does not hold true to how you will feel.  The past is the past and you have today to stay in touch with, you cannot know the future. 

[Sue]

Hi Vonda!

Just wanted to welcome you to the Forum also.  Looks like we had a bit of a shaky start, but please know that you are welcome here and any question, concern, venting, and fear can be addressed here. We all do understand, and as you found, several have situations similar to yours and you've already gotten some good advice. 

I am so sorry you are going through so much right now.  Having a baby is stressful in itself, and this on top of it certainly doesn't seem fair.  Sounds like you are heading in the right direction and that's good.  Make sure you are comfortable with your doctors and that they answer all of your questions.  You can also get the information that the ANA sends out to you which will help you, too.  Everyone on here has a slightly different story in their AN journey, but I'm sure that you will find friendship and support here to help you when you need it.

Take care and best of luck to you in your treatment and eventual recovery.  Having said that, I'm reaching out and giving you a big welcome hug, Vonda! 

Sue in Vancouver WA USA

[elderbirds]

Hi Vonda,
I don't have much to add to what has already been said, but I understand where you are coming from.  I had a very hard time justifying how I could look and feel so "normal" and put myself through major surgery to possibly end up deaf in one ear, loss of balence and facial weakness (all of which I encountered), but I can't be angry or upset, I'm alive and they got the whole tumor!  I am ajusting to these  "changes" some are temporary (they tell me) and others more permanent.  It doesn't change who you are on the inside, and those close to you realize that immediately.  That being said, in addition to being an ANer, I am also an IBCLC lactation consultant and would be happy to answer any questions about nursing and surgery, as previously mentioned, it is definately managable.  Talk to your doctors, there are definately pain meds etc that are more compatible with breastfeeding than others and most docotors are very supportive of this.  I never needed anything for pain.  PM me if you have more questions.  Best of luck to you.
Hope

[Debbi]

Hi Vonda-

Welcome to our little club! 

Yep, facial paralysis is probably the biggest fear for most/many of us.  And, fortunately, many folks come through with smiles intact (in fact, probably a majority).  For some of us, we have to make peace with the mirror after surgery.  I wanted to cry when I first saw my face in the mirror - but of course, my right eye won't tear, and crying with only one eye isn't that fulfilling...   I would like to say that "it's no big deal" but I'd be lying.  It is/was a big deal - but it is NOT as bad as you probably fear.  At 5 months post op, my smile is just starting to return, my eye still doesn't close, and my lower lip doesn't move - but I no longer feel self conscious about it.  You realize that the people who love you still love you, and under a crooked smile lives the same wonderful person who always lived there - she just looks a little different. 

If I'd had a choice, I would have chosen not to have facial paralysis - but it isn't the worst thing to happen.  There are so many people on this forum who deal with much worse.  The best advice I can give anyone is to educate yourself, but don't make yourself crazy worrying too much about every possible outcome.  Take care of yourself, nourish your body and mind, and keep looking forward.

sending you good thoughts...

Debbi

[arkansasfarmgirl]

Thank you everyone for being so supportive, even after I sort of stuck my foot in my mouth.  :-)  I found out yesterday that the newborn daughter of one of my friends has a life threatening heart defect and had to undergo surgery and will have to go through several more.  It kind of hit home that things could definitely be worse, and thank God it's me having problems and not one of my kids!!

I spoke with Dr Brackmann monday and he was wonderful.  We're waiting for him to go over my records that were mailed yesterday and get things straightened out with my insurance company.  One step at a time.  In the meantime, either I'm doing a little better or I'm adjusting to things being out of whack (my left eye nystagmus).  I took a horse to be shod today and everything felt pretty normal.  I've wondered if it got so bad so fast because of a head injury I got right before the baby was born (a very heavy object fell on top of my head and drove my skull onto my spine--ouchy!).  I'm just a wee bit accident prone...  LOL

Vonda

[Omaschwannoma]

I wouldn't doubt the trauma to your head got things rolling earlier or should I say "shook things up good"?  I have heard many accounts of how the tumor was discovered by accident while patients have CT scans or MRI's for head and neck traumas. 

Glad you are moving forward by contacting a reputable place for vestibular schwannoma treatment, I'm sure you will be very pleased with your outcome whatever it may be. 

[leapyrtwins]

Vonda -

I'm so sorry to hear about your friends' newborn daughter.  I will keep her, and them, in my prayers.  I hope everything turns out well.

Like Arushi, I don't think the trauma to your head was a factor in your AN symptoms getting worse, but that's just my opinion - and I've been wrong before (many times in fact  )

Jan 

[Rivergirl]

Hi Vonda,
Sorry about your entrance to our 1 in a 100,000 club but you are among some great support.  It is too bad that you will have to move quicker than us watch an waiters, that gives you less time to sort things out and adjust.  Keep reading the posts old and new and you'll find strength from others experiences.  I am sending good wishes for you to barrel through this race and come out with a best in show!

[DeniseD]

Congrats Vonda

I'm a new mom aswell, Thomas is 14 weeks old.  I admire you for breastfeeding, I tried it for 5 days but I found it too difficult.

The only pain medication I was taking was paracetamol, I was weaned off the steroids after a few days.  I had an awful difficulty sleeping I was given a sleeping tablet at night.  The hardest part and most fustrating part was not being able to pick up my baby, my sister or husband would hand him to me.  For almost 4 weeks I'm picking him up, my head and neck does hurt when I do put him down.  He was weighed on Tuesday and his weight is 15Ilbs.

I never had a chance to come to terms with my AN when I was diagnosed I was sent by ambulance to Dublin.  Yourself and probably most of the people on this forum knew about there AN and are 'waiting' it must be very difficult and hard waiting for treatment.

Life becomes so precious after surgery, I didn't mind my facial paralysis but I do find the eye issues annoying.  I'm sending you and your family all the best and when you have your surgery you will be home again to enjoy your baby.
Denise

[wendysig]

Hi Vonda,
Sorry I am so late in coming to this thread.  Welcome to our group.  You will find a wealth of information here and the most wonderful, insightful and caring people I have ever known.  We are all here to support each other in any way we can, give and share advice and humor and listen to each other vent.  Feel free to ask any questions, vent and join in our hiliariyt (In AN Community, of course Phyl!).

Best wishes,
Wendy

[mar50]

Hi Vonda!  I'm glad you found this forum at this point in your "journey" - hopefully, hearing others' experiences might help you.

Your post struck me on two counts, and maybe I can answer questions for you.  I was diagnosed when my son was 4 weeks old, and had surgery two weeks later.  Although the OB/GYN and others were very supportive of me trying to continue to breastfeed, unfortunately, I couldn't due to taking Decadron (steroids I was put on at the time of diagnosis due to swelling).  I did have quite a bit of milk stored, and he got something like 2 additional weeks of breastmilk just from what I had frozen!  So to me, it sounds like you are on course to get you through.  Maybe with planning and the support of your doctors, you will be able to get through it.  I wish you all the best with it!!! 

Also, I don't know if you've made a decision yet as to treatment, I did have surgery to "de-bulk" with follow up GammaKnife.  I consider that to have been the best treatment for me, based on my dr's recommendation, and am very happy with it.

Mostly, I just wanted to offer encouragement and support;  I know it can be an emotional time, and you've got it on two fronts.  Please feel free to e-mail me with any questions or if you just want to "talk".  Hang in there, and best of luck with whatever treatment you choose!!!

Martha
(Mar50)

[MaryBKAriz]

Hi Vonda,

I wish you well in your learning process. I think Jim had advice worth considering. You could perhaps get the surgery and the doctor stays away from the facial nerve and then go to radiosurgery to finish the little bugger off.

I understand having a quirky way to word things and dealing with problems with humor. I do the same. I think as you will learn, the people on the website are so beautiful, facial nerve damage or not, that shines through first. I bet people who knew them pre and post would say they are more beautiful now because of their journey and the experiences. I am going to be 60 soon and that probably sounds old but I feel like I was a young mother only a year or two ago.I think as people's looks change through their life's journey, inside looks change, also.  So often it more than makes up for the loss of previous physical image. I hope I am making sense.


I know starting out this is just a lot to absorb. I send you BIG, BIG hugs!!!! I am fairly recently diagnosed and am post CK by 4 months. It still hits me. I feel like I did some panic mode things at the beginning, but I am adjusting better with time. You will too. Remember we are all here!

All the AN information is overwhelming to absorb, so be patient with yourself. Pamper yourself when you can.

Take care and stay in touch,

Mary

[arkansasfarmgirl]

I'm so frustrated right now.  Dr Brackmann told me nearly a week ago that I needed surgery asap, as my drains are almost plugged.  It's already been over 3 weeks since my MRI.  We haven't gotten anywhere with my insurance company, my primary physician is not returning my calls (which would be why I've been meaning to get a new one for 3 years)...I want this thing out yesterday and it appears that more weeks will go by before anything gets done.  Meanwhile, I'm afraid that things have gotten worse.  When I bend over and stand back up, I feel uncomfortable pressure in my head for a few minutes.  I'm going to call the dr tomorrow.  I'm going to cry if I have to go on meds right now, with weeks to wait for surgery.  I don't have enough milk stored up for that, even if I supplement.  Lilly is 10 weeks old.  A potential buyer is looking at my barrel horse today.  As much as that upsets me, it's going to be way worse if my little girl ends up weaned.  I'm definitely in a bad mood today, even after going to church.

Insurance companies suck--but we'd be in the poorhouse without them.  :-P,',',',',',

<sitting here trying not to cry>
Vonda