ANA Discussion Forum
General Category => Inquiries => Topic started by: arkansasfarmgirl on October 04, 2008, 03:10:00 pm
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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
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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.
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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
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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
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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
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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
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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
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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.
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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.
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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
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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!
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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
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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!! ;D) - 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
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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
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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
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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
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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! ;D
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 ;D
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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.
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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
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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
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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... :D 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
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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
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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.
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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
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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!
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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
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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
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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)
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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 :D 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. :D
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 :o
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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
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Oh Vonda~
I'm so sorry. I will just pray all day and tonight that you will hear from the insurance company tomorrow and they will pay for everything. What company is it? Maybe someone here has some helpful experience with them...
K
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Hi Vonda,
How frustrating for you. Here in Canada we wait and wait to see specialist, it's always something. Have faith everything will work out. Call again tomorrow, be a pain, the squeeky wheel gets the oil. Let me know how it goes - we are all here for you. I breast fed all three of my children then right into a cup. I understand how you are feeling about Lilly.
Michelle ;D
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I understand your frustrations of not being able to breastfeed your little girl. I tried to breastfeed both of my children but never had the milk supply to keep up. My last son weighed 11 pounds 7 ounces at birth and was in the NICU for over a week so unless I could breastfeed this big guy every 10 minutes then he just wasn't happy. Well....he ended up on Enfamil with Iron. He is now 3 years old and never had an ear infection and hasn't been ill in over a year! Very healthy immune system! The formulas that are made these days are very similar to breastmilk and provides all of the vitamins and minerals that your baby will need. You won't get the bonding from breastfeeding but I can assure you that the bonding will happen no matter what as you tend to your baby's needs through feeding her with a bottle and lots of cuddling! Please don't put so much pressure on yourself right now with this issue as you have many other things that are so important to tend to. Your baby will be just fine....I promise. I was a neonatal/pediatric nurse for 13 years and even our lactation consultants agreed that the formula is well fortified. Good luck with your insurance and try not to burden yourself with things that will be okay either way. It doesn't make you less of a mother when you can't breastfeed and when your child is older she won't care what she was fed as long as she has YOU.
Angie
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Hi Vonda,
I can "hear" the pain in your heart over this. I hope the insurance company gets back to you today. I am sending you a BIG Hug!
Mary 8)
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Greetings Vonda, Number one you are seeing the best doc ever. He treated my AN in 2004 and I go back again for a different tumor in a few weeks, maybe I will see you there. Number two. Keep your humor. We need all the humor we can muster. It's a pain killer. My nerves are regenerating from 2004 and I have fun with wiggling my chin and making my eye blink. We are here for you and your family. My e-mail address is posted, don't hesitate to e-mail direct. That's why we list them. Take care and don't leave us. ,,,,,,,,,PS,, When I first posted someone made a wise crack about my name ( mrgarlic) and I was offended and said so. The joke was on me. They were telling me to "back off" I didn't catch the fact that they were reffering to garlic. All was forgiven and forgotten and laughed about. Hang in there Vonda,,, Larry
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Hi Vonda,
I have been following your posts and I wanted to give my two cents worth about the breastfeeding issue. I think that you are putting too much of a load on yourself with this. Sure, it is great to breastfeed your beautiful baby, but really, it is not the end of the world if you don't. I breastfed both my kids, and I can honestly say that it is one of the most difficult things I have done in my life. At 2-3 months, when they were going through growth spurts and feeding every hour, I was totally exhausted because of the lack of sleep. I can't even imagine doing this while recovering after major surgery.
Right now you should focus on yourself, sorting out the insurance issues and getting treatment. Remember than more than everything your baby needs her mom to be healthy and well again, and the most important thing for you is to receive successful treatment and recover well.
Hopefully you will be able to get some answers from the insurance/doctors today.
All the best,
Marianna
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It's so nice to have a place to vent where people understand.
As I'm sure you could tell, I was having a really bad day sunday, and monday wasn't a whole lot better. :-\ (especially since I used "retail therapy" to try and make myself feel better--now I have a bunch of crap to return to the store :o) But things are looking up. We're making progress with the insurance company and hope to get an "Ok" from them soon. My freezer is steadily filling up with **** juice, so if things go smoothly, I'll be able to get by. We're planning to supplement with formula 50/50, just in case I have to be medicated longer than expected. I appreciate all the reassurance about the possibility of having to wean my little girl. I know all these things in my head, but it hurts my heart to think about it. Besides all that, I'm very goal oriented and keeping her on the breast is giving me something to work toward. And something to think about besides what is growing in my head. I know it's going to be tough, but I have an awesome support system. My mom and husband are totally willing to milk me like a cow if they have to. LOL ;D
I have a verbal committment to buy my horse. They are super nice people and the girl that will be riding my mare is real sweet and quiet, and Sally Sue (the horse) seemed to really like her, so maybe this will work out well. The money will sure come in handy... I hope that I'll be able to get back into horses in a year or so, but it's not my #1 priority.
My 3 year old told me he's ready for me to get the booger cut out of my head so he can go stay at Papa's house. Gotta love kids. :D
Vonda
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Ok, now I'm lauging my azz off because the word b o o b got beeped out.
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Vonda~
I always thought that people just put in astericks themselves!! I know I always thought that was a bad word... ;D Glad you feel better about the whole nursing thing. I am also glad that things are looking up with the insurance and the horsey.
K
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Yeah Vonda things are going in the right direction for you. ;D ;D
Hopefully it won't be too long until your son can go to Poppas and you can be a postie.
Thinking of you and sending good vibes.
Michelle ;D
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I hope that I'll be able to get back into horses in a year or so, but it's not my #1 priority.
I don't know about barrel racing, but horse back riding is something you can do again. I remember when David posted about riding again, so it can happen:
http://anausa.org/forum/index.php?topic=6283.0
I agree with Angie and Marianna, the main thing about being a good mother is wanting to be a good mother and being there for your kids. Like they say this time of year, its not the gift, its the thought that counts. Recently my sister had to remind me that our mother, at 81, is actually a "little old lady." I still can't really think of her that way, though; to me she will always be Mom.
Now mind your language...;)
Steve
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Hey Vonda,
Sounds to me like you are doing your best to deal with a difficult situation in the best way possible. You're worrying about the things we have all worried about. I hope for you that all the problems resolve and you can get on with your life.
As an aside, my son (now 20!) was a preemie and didn't really breastfeed well. I kept it up for 5 weeks (5 miserable weeks) until finally giving him formula. He's a big strapping 6 footer now, none the worse for the wear.
Best,
Marci
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I am so frustrated right now, I just want to hide in a hole and cry.
My insurance company denied my request to receive treatment at House. We are appealing, of course, but everything is taking longer than I want it to. I have 2 lawyers involved now--one friend of the family and one the boss of a friend. The ignoramous medical director at the insurance company is trying to say I can be treated at the university with GK. WTF? He apparently didn't even talk to the drs over there, just read on their website that they can treat ANs with GK. Um, not mine you ignorant piece of ****. I really don't need this stress. I bet it would be good stress relief to hang that man up by his toes, horsewhip him until he bleeds, and then dip him in a vat of alcohol. hehe Instead, I had to make do with throwing our cordless phone at my husband because he wouldn't stop snoring...and broke the phone because I missed him and it hit the floor. My little boy told me that was not nice and he was going to have to spank me if I threw a phone at his daddy again.
Lilly is 12 weeks old now. Growing like a weed. :-D My 3 year old wanted to be a Farmall tractor for Halloween. I wish I knew how to post pics on here--he wore his costume to the church Halloween carnival last night and was so darn CUTE. My little future farmer. :-)
Vonda
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Vonda:
I was sorry to learn about your insurance problems. You're not the first AN patient that has had to fight to receive the treatment you want, where you want it and with the doctor of your choice. I trust that with two attorneys working on it, you'll ultimately be successful in your appeal. Still, as you noted, the time wasted is frustrating. Many folks here can empathize with your plight and totally understand your phone-throwing frustration. Too bad it broke the phone and your little boy saw it, although his 'warning' about spanking you is kind of poignant. Kids don't miss a thing, do they?
Although Halloween isn't quite the way it was when I was a little boy (back in the Stone Age), it's still a fun time for little kids. I love the tractor costume concept. Try to post a photo. :)
Jim
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Vonda,
I do hope that your insurance company decides to cover your surgery. Don't give up! In the meantime....maybe your husband is the one that needs to hide in a hole to keep from getting hit in the noggin w/the phone! Be good to the man because you're going to need him after your surgery. Sounds like your little boy is a good disciplinarian! Take care and Take a good deep, long breath. Pray. Have faith. I have to tell myself this all the time.
Angie
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Hi Vonda. Welcome and congratulations on the baby! I am sorry that you have to jump into negotiating not only a new diagnosis, but also the insurance companies so soon after. I am also young (31 when I had surgery) and although I haven't been able to start a family yet, I was trying when diagnosed and am anxious to try again asap.
As far as long term pain, I talked with my neurologist, who recommended a very minimal dose of methadone, which controlled the pain at low doses. He said that it would be okay to get pregnant and breastfeed while taking it and that it has been shown to be relatively safe in small doses. Also, while breatfeeding your new little one is clearly very important, don't forget that getting relief from your pain is key to healing. Talk with a specialist about how to do both simultaneously.
I also had difficulty getting insurance to pay for the procedure "out of network." >:( My partner was a great advocate and got letters from all of my "in-network" MD's stating none of them would do the surgery and/or citing medical literature that shows the more of this surgery the surgeon does, the better the outcome. We made sure to specify that the size of the tumor mattered (I also gad a large tumor). My surgeon wrote a letter to the insurance company saying the tumor needed to be taken out by a specialist and that due to the large size and the compression of my brain stem, I would die if it were not removed w/i 2 years. AN's are often listed with the insurance company as non-urgent, but having a surgeons note saying it was urgent (due to size/symptoms), made it more of liability for the company not to cover it!
I understand your anxiety about facial palsy. I have been looking for other people in their 20's and 30's with AN's, since I think it is a unique place in life to be dealing with such a scary event. I was grieving my paralysis before it even happened, although when it came down to it, I was surprisingly less focused on the paralysis than on recovery. I'm sure the anticipation after having Bell's Palsy makes it more difficult, but time will pass and inevitably, it will be okay. This cite has been a great support for me re: the difficulty of going through this process.
Good luck with the insurance companies and with your surgery! Feel free to PM me anytime. :) Karen
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My insurance company just called and my request has been APPROVED!!!!!! Thank God.
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That's fantastic news! ;D
Katie
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Onward and upward - keep us posted. Hopefully you will have a date soon and you can put this whole thing behind you!
Michelle ;D
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Vonda,
Fabulous. Perhaps Dr. Brackmann had a little chat with that insurance company medical director, explaining to him what constitutes being medically qualified to prescribe treatment for an acoustic neuroma. It might have been a nice discussion to listen in on. :)
I hope the rest of your plans develop smoothly. When you get a date, be sure to put it on the AN Calendar.
You are now officially a pre-postie. ;)
Steve
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YEA!!!!!!
K
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My insurance company just called and my request has been APPROVED!!!!!! Thank God.
Alright! Congratulations on this victory. I'm sure it takes a load off your mind as it enables you to move forward with the surgery. Enjoy your trip. :)
Jim
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They told me that I would get in quick once we got the insurance on board. They weren't lying--surgery is November 19. Eeek! My dad is flying us privately (he has a twin engine plane) so it will be easier with the baby/ frozen breastmilk/baby gear. Looks like I'll miss thanksgiving though. That's kind of a bummer.
Vonda
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Okay, Vonda, I put your date on the calendar. Judging by that week, pre-Thanksgiving surgery seems to be popular this year.
You are now a pre-postie, and perhaps the only one who has a personal pilot to fly them around the country. ;D
Best wishes,
Steve
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Well Vonda,
You are having surgery on my Birthday! I'll raise a toast to you having great success with your surgery and me getting closer to the big 40 (not there yet but very close)
God is great...
Take care,
Angie from Arkansas Too!