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

[arkansasfarmgirl]

I've just been diagnosed with a 45 mm by 36 mm acoustic neuroma.  I'm 34 years old and a mother of 2...my youngest is only 2 months old.  I have so many fears and questions right now.  My baby is breastfed and I'm scared that this will put an end to our breastfeeding relationship.  I'm storing up as much milk as I can, but I'm not sure it will be enough to get us through.  It will absolutely kill my soul if she ends up weaned so early.  The real issue is how long will I have to be on pain meds after a translab?  I was told 3-4 weeks yesterday by the consulting dr, but I'm hoping to hear that a high pain tolerance would lessen this???  Pain meds tend to make me very sick anyway.

I'm so scared about my facial nerve function.  I have partial numbness, but very little weakness--and that is a leftover from a bout with Bell's Palsy 10 years ago.  I look completely normal and not to brag, but I'm an attractive person and used to feeling confident and being admired when I go out.  I can't imagine a life of looking like a freak.  My hearing is totally shot, but I don't care about that.

I'm confused about the loss of balance thing.  I am a competitive horse rider (barrel racing) and never noticed my balance being off this whole time.  It is now, because I have recently (since the birth of my baby) developed nystagmus in one eye that makes me dizzy when turning, but this is the first I have noticed.  And I *should* have noticed something being off because balance is everything when riding a horse at speed.  I just think that is weird.  I even rode most of the way through both pregnancies and never had a problem...  Any others out there competitive athletes who were able to return to their sports?  I'm selling my good horse and keeping my flunk-out so I'll at least have something to putter around on.

Has anybody had a combination of surgery and radiation on large tumors?  I was told that could be a possibility for me because of the size.  I asked the dr would he classify my tumor as large or ginormous and he laughed and assured me he had seen bigger.  :-)

I am being referred to Dr Brackmann, btw. 

Vonda

[jazzfunkanne]

There is another new mum on here called Denise she might see your story and reply. My AN was over 4.5cm, they saved the facial nerve, i was left with grade 6 palsy which is improving 2 years post op.

[MAlegant]

Hi Vonda,
Welcome to the group.  I'm sorry you're having to deal with this but as you can see most people come through this just fine.  Regarding the pain med question, I was on them for maybe a week total, but it's very hard to say what you will need.  The other question might be how the other drugs in your system following surgery, (anesthesia, steroids and the like) will metabolize. The docs should be able to tell you when it's safe to breastfeed again.

Funny, everyone seems apologetic when they express fear about the facial nerve.  It's not a vanity thing and whether we are attractive or not we are all afraid of this.  Our smile and ability to be expressive is innately human and as you know anything that messes with that can seriously shake things up.  That being said, you've already made it through Bell's Palsy and so you know there is a recovery process.  The odds are that most facial paralysis recovers over time, though in varying degrees.  I don't blame you for being scared; I was, and I'll bet I'm not the only one.  I'd also like to say that there are some on this site who get through life with flying colors with facial paralysis.  It take a certain amount of inner strength but it can be done.  There are also options for repairing facial nerve damage as many here can attest to.

Sounds like you are going to one of the best places for this type of surgery and these doctors are just amazing at what they do. My tumor was 4cm and we were planning on debulking it and then going back to radiate it but it came away from the nerves nicely and they were able to get it all.

Hang out here and talk to us often.
Best,
Marci

[Jim Scott]

Vonda:

Hello and welcome, although I wish you didn't have a reason to be here.  Since you do, allow me to respond to your questions and offer some observations that may be helpful to you.

Your AN is relatively large but that is not an insurmountable obstacle to a good outcome.  I had a similarly-sized AN yet enjoyed a very successful surgery and radiation process that left my facial nerve intact and with no complications worth mentioning.  It can happen and it isn't all just 'good luck'.  I had a caring, compassionate and highly experienced neurosurgeon who was as concerned about my quality of life, post-op, as he was about destroying the tumor in my skull.

You're in good hands with Dr. Brackmann and I would strongly suggest you explore the possibility of surgery-then-radiation.  Unfortunately, I cannot tell you whether breastfeeding will be possible after surgery.  That is a question for a licensed physician that has examined your medical information to answer. I don't wish to mislead you one way or the other. 

As for the your apparent lack of noticeable balance deficits, that is a benefit and not completely unknown with AN patients.  Some patients don't lose much hearing, either.  It all depends on, not only the size of the tumor, but the exact location and configuration of the thing.  I cannot accurately predict what level of athletic activity (horse riding, specifically, in your case) you'll be able to engage in, post-op.  I doubt your doctor can, either.  Most AN post-op patients slowly but surely get back to physical pursuits although it often takes a lot of work motivated by a love of the activity.  I think your desire to ride will be enough to help you overcome any AN-related obstacles. 

As for your quite reasonable concern with possible surgery-related facial paralysis: that fear is valid and there is no need to feel embarrassed for being worried about your appearance.  I'm older and not much to look at but I still had a deep concern about facial paralysis after my surgery.  My neurosurgeon acknowledged that and set up the surgery/radiation plan to destroy my large AN and not damage my facial mobility.  He succeeded.  I experienced no facial paralysis or or related problems and today, 28 months post-op, I'm pretty much back to normalcy.

My final thought to you is that you have to explore all your options, educate yourself and be pro-active in your treatment.  This website is a great place to begin.  Lots of knowledgeable folks with good, practical advice and real empathy to offer.  The ANA will send you literature that explains, in easy-to-understand language, the facts about acoustic neuromas.  Check the website's home pages for the link. 

I hope you'll be a frequent visitor here, Vonda and I trust you'll gain from doing so. 

Jim

[Kaybo]

Vonda~
Sorry you are here, but welcome to our little group.  I guess I am the "freak" that you are talking about, but truly, there are MUCH worse things.  Please don't worry about that until it happens (which it might not) - you have a lot of other stuff to consider right now, especially a precious little baby.  Agreeing with the others, you will have to seek out the advice from a Dr. about how long not to breastfeed, but I don't see it as having to stop completely.  You are doing the right thing by already storing up as much milk as you can.  I went back & forth VERY successfully from bottle to breast - no "confusion" issues.  Something I found is a tea called Mother's Milk tea by Traditional Medicinals - is tastes pretty good and will boost your supply and I think also help after surgery - you would just have to have someone committed (sp?) to helping you "pump & dump" right after your surgery when you probably won't be thinking about that.  I think that it can certainly be done - where there is a will there is a way!!  Check out my blog if you want (address at bottom) - I had my AN pretty young and then were blessed to have 3 beautiful girlies.  Please feel free to contact me if you would like to talk on the phone.  I have unlimited long distance and can call you if you want to PM me your number.
Take a deep breath and know that it will all work out OK.

K

[krbonner]

Vonda -

I was diagnosed when my youngest was 4 months old (my older child was 3).  At that time, my biggest fear was that I'd have to stop breastfeeding.  It would've been absolutely devastating to me.  I completely understand how you feel about that.

I was initially diagnosed by a local ENT, and referred to a specialist at a major teaching hospital in Boston.  I had about a month in between those appointments.  During that time, my husband and I formed a plan for how I could continue nursing if I needed surgery quickly.  1) Store up as much milk in the freezer as I possibly could, trying to boost my supply in the meantime.  2) While in the hospital (and after, if needed), rent a hospital-grade pump and have my mom (a nurse-midwife who would stay with us during my recovery) or husband hook me up every three hours to pump-and-dump to keep the supply going.  3) Get off the meds as quickly as I could.

I ended up being fortunate.  I was able to wait over a year for surgery, so my son was weaned by the time it had to happen.  I count my blessings for that every day.  After my surgery, I was on prescription pain meds and steroids contraindicated for nursing for 7 days, then was able to switch to regular ibuprofen (still taken round-the-clock) which is at least safe for nursing.  (I don't know how long it takes for the other pain meds to leave your system - that's a good question for the doctors, or you can look up that info online in Hale's, the book of drugs and how they relate to pregnancy/breastfeeding.)  During the first few weeks, there's no way I could have taken care of my children.  If needed, someone could've brought me my baby to nurse, and taken him when he was done.  And we would've done that if needed.  But you will need round-the-clock help with young children.  By 4 weeks post-op, I was able to be alone with them for a half-day at a time and it quickly improved from there.  It took a good 6 weeks before I could wean off the ibuprofen.

My tumor was smaller than yours, and everyone's symptoms and reaction to treatment are different.  I wish I could give you clear answers on what life will be like after, but no one can.  I had very few balance problems before surgery, and notice it now only if I'm very tired.  I've had no facial issues.  My only remaining issue is single-side deafness, which I manage with just fine.

You're in good hands at House.  The skill and experience of the doctors is critical, but it's also a lot of luck.  Please let me know if I can answer any questions for you.

Katie

[leapyrtwins]

Vonda -

just wanted to note that no one who has facial paralysis, as the result of an AN or any other cause, looks "like a freak".   I'm sure you didn't mean to offend anyone here, by your unfortunate choice of words.  However we are all here to support each other, so please keep that in mind when posting 

While I breastfed my twins, they were 11 1/2 when I was diagnosed with my AN, so it's not something I know about in relation to ANs.  Like Jim said, you need to address this concern with your doctor.

Not everyone is on pain meds long-term post op.  I had retrosigmoid and didn't take pain meds much more than a day or two post op - and it wasn't for anything related to my head, it was for the stiff feeling in my neck from being in an unnatural position for 7 1/2 hours of surgery.

Everyone's AN journey is different and the best thing you can do is not worry about side-effects you may never encounter.  I'm not saying you shouldn't be aware of them, or educate yourself about them, but don't spend too much time worrying about things that may never happen to you.  My suggestion is take things as they come.

Jan

[calimama]

OUCH. sorry, just have to say that i don't think "freak" is fair to any of us who are dealing with this.
I am sure of all of us were pretty happy with how we looked before, but appreciate that people who know us and love us still see us for the beautiful people we are.
It is hard to have people look at you funny, but the AN diagnosis, treatment and recovery sure puts a lot of life in perspective. I hope you can avoid any facial problems as it is not something that anybody would chose for themselves or anyone else. 

[arkansasfarmgirl]

Jan, I'm truly sorry if you were hurt by my use of the word freak.  It wasn't meant in a derogratory way.  I just have a weird sense of humor sometimes, and had been using that term when joking with my husband about possible outcomes.  I come from a family who frequently laughs at funerals...that's just how we deal.

To everyone else who has responded:  Thank you.  Your replies really help.

[leapyrtwins]

Vonda -

I "deal" by using humor also, but not in the way you apparently do.

One of my colleagues at work has Bell's Palsy and it would never cross my mind to refer to him as a freak, even in jest.

Your use of this word didn't hurt me because I have facial paralysis, it hurt me because many people on this forum, whom I care for deeply, do and I in no way could ever consider them to be freaks.

I didn't reply to your post to make you feel bad, or to "slap your hand".  I just wanted to make you aware of how hurtful your choice of words was.

I also wanted to reinforce that we are here to support each other - regardless of our personal outcomes.

That said, I wish you well on your AN journey and hope to see you around the forum.

Best of luck,

Jan

[CROOKEDSMILE]

Well.....Hmmmmmm.....How do I say this?!?!? Ummmmmmm. (Angie....be nice is what I am telling myself right now) Facial paralysis=Freak. Not a good thing to say. We will be here to support you but you must support us in return.
Sorry to hear about your troubles. May God protect you and see you through this trying time.
Crookedsmile and BEAUTIFUL inside and out!

[arkansasfarmgirl]

Wow, I really hit a nerve didn't I?  (pun intended)  Let me just say that I would never ever ever refer to somebody else as a freak.  But I would most definitely call myself one, if warranted.  Does that clarify my meaning any?  IMO, I looked like a freak when I had Bell's Palsy and I hid out at home for 6 weeks.  That won't be an option this time, so I'm thinking that sunglasses and duct tape are going to come in real handy.  ;-)

Again, just so we're clear, I would never refer to another human being as a freak, no matter how unfortunate their appearance.  But I reserve the right to call myself whatever I want.  I just told my brother in law that I hoped they find a brain in there when they cut me open.  Sorry, but I find that funny...  I just don't want anybody feeling sorry for me, and I'm afraid that they will.

Vonda

[Kaybo]

Vonda~
I think that I get what you are saying because I have referred to myself that way before in jest and others (that do not have any facial problems) were very upset and wanted to make sure I didn't really feel that way - because they certainly did not view me that way.  I appreciate Jan's willingness to step up & say something since she does not even have any paralysis (THANKS JAN!!  ) - it shows that she cares & wants to be sensitive to everyones' feelings.  I think it is something that just kind of "hit" us wrong the 1st time we read it.  Now that you have explained your meaning, how about we start over?  You will not find a more supportive, caring group of people (I think this is a prime example of us trying to protect the feelings of others) and we will be there for you in your journey.  When will you go to the Dr. again to be able to find out more, specifically, about being able to nurse your baby?

K

[ppearl214]

Hi Vonda and welcome. I see you have met some of the great folks here and suggestions/notations thus far are very helpful.  You are in good hands at House and for the size growth you have, you can have faith that they will do the very best they can.

As to put an end to the discussion re: the use of certain words here.... please know that the mods are watching very carefully.  Now, as many here know, I was appointed by my town to the local Commission for Disability Issues... a public appointment I am proud to hold.  I can understand that with nerves... or newness to a group, etc (as I did at my first meeting with the CDI), terms can slip from the mouth and we must all step back and recognize for where it comes.  I appreciate everyone helping Vonda understand that anyone with any form of "disability" or outward appearance issue should not be referred to as such... and I appreciate vonda understanding that we all (vonda included) have sensitivities to ways that the public may see us.  Many of us have outward disabilities (myself included) and my hope is that all, in life, recognize the person within, not the outward appearance.  It's the inner beauty that makes each and every one of us the truly special people we are.

So, let's continue our welcomes to vonda... and help her understand the journey she now has joined with us... .and for vonda.... again, welcome to the site... I hope you find the info and experiences here helpful..... I send wellness wishes to you and look forward to your participation here.

Phyl

[sgerrard]

Many of us have outward disabilities (myself included) and my hope is that all, in life, recognize the person within, not the outward appearance.  It's the inner beauty that makes each and every one of us the truly special people we are.

I was all set to jump in with a truce flag, but Phyl beat me to it - and said it better. 

Vonda, I think many here share your concern about facial nerve issues, along with all the other possible consequences of having AN surgery. In your case, with an AN somewhere in the big to "ginormous" range, you are certainly entitled to express your fears and worries.

There is every reason to remain optimistic. You may sail through without a hitch; if not, you will find that any result can be overcome, and that life will still be a rich and rewarding experience. It is not an easy thing to face head on, but we are all here to support you on this new journey.

Steve