ANA Discussion Forum
Treatment Options => Microsurgical Options => Topic started by: Roger64 on October 13, 2008, 09:20:04 pm
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Newbie – Surgery is schedule for Oct. 30th. I we found out on 8/18 of my AN. Which was bad enough but, I got the news via cell phone at lunch time! Thanks to the VA. Plus my wife is 25 weeks pregnant and due in January. Now have two little girls (6 and 3) that do not know that it’s a “tumor� they just know that daddy doesn’t feel well and has been “sick� a lot. Obviously we are trying to protect them from the severity of this illness. But, how much do we tell them? How do we even start the conversation? What advise can you give me for my wife? Especial what to expect after surgery and how to coop? What should I expect? Also, what do I need at the hospital? What should I do to prepare the house? Any other advise?
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Roger -
sorry to hear you've joined us, but you're definitely come to the right place. Mind if I ask, what size is your AN? and where are you having your surgery?
We can, and will, offer you all kinds of advice - sometimes whether you ask us or not :D
Congratulations to you and your wife on the impending birth of baby #3. I have two children myself, but they are pre-teens.
IMO you shouldn't tell your girls too much, because they are too small to really understand. I'm not sure what you mean by the "severity of this illness", but let me assure you that while you may not be "yourself" for a while post op, and you might have some lingering post op issues, an AN isn't normally debilitating. I'm sure your doctor(s) informed you of what possible surgical side-effects you are facing, but every AN patient is different and we don't all encounter every side-effect. In my case, I have no facial nerve damage, but I am SSD (single-sided deaf); I now wear a BAHA (bone-attached hearing aid).
Your girls should be able to visit you in the hospital 2 or 3 days post op and the biggest thing they'll probably notice is the large, white, mastoid bandage wrapped around your head. Other than that, you'll most likely just look like dad to them :)
There are many threads on the forum about what to bring to the hospital, what to expect, etc. Here are just a couple:
http://anausa.org/forum/index.php?topic=5830.msg55804#msg55804
http://anausa.org/forum/index.php?topic=5798.0
You might also find suggestions for your wife under the caregiver section.
Others will be along shortly to add their suggestions and thoughts, but feel free to ask me anything you'd like (I'm not shy) either through the public forum or through a PM or an email (it's listed in my profile).
Good luck,
Jan
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Hi Roger,
I would tell the kids that something is broken, you are getting it fixed, and you will be fine. They will mainly be concerned about whether you will be back to read them stories and watch their school play, to which the answer is certainly yes. I would tell your wife that you won't be much help around the house for a month or so, that you will be taking lots of naps, and you may be a bit grumpy sometimes, but you still love her.
Welcome to the forum. No matter what size of AN you have, and what symptoms you have going in or coming out of surgery, there will be members here who have been there and done that, and can help you out and support you through the process. Best wishes for the 30th.
Steve
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Hi Jan,
I am having it done at St Vincent Hospital in Indianapolis. I have and 8x5 mm tumor on the left side. I guess I am still in the dark about all of this.
Roger
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Hi Roger
I'm quite a newbie too so i'm going through the same issues and confusion as you. Joining this group is a great first step as you will really find lots of help and support. Its also good to see the experiences of others and get some ideas as to what you can expect. I found it useful to just browse through previous posts here to find out info, though some of the more experienced members can probably point you to more specific advice and share their personal experiences with you.
The best advice seems to be to ask lots of questions and make sure you are 100% comfortable with your surgeons and the treatment. I'll be thinking of you on the 30th.
Best wishes
Hannie
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Welcome? Very sorry you are going through this, but you aren't alone.
Your tumor is in the "small" range and I am wondering if your doctor offered you "Wait and Watch" as an option? Also radiation treatment is the other form of treatment. If you do not have debilitating symptoms, ie: severe balance issues, nausea, headaches, facial nerve palsy/weakness, "W&W" is a good thing to consider as these tumors tend to stop growing for a while or grow very slowly.
The recovery from surgery can be somewhere between 6 weeks to one year. Some people have debilitating headaches after one year. One doesn't know how they will heal, but the majority recover within 6 weeks and back to work shortly thereafter. Regaining balance and learning to walk, spin around, move your head side to side will be your challenge and vestibular re-training therapy is a must after surgery. Also many people suffer from "brain drain" and find themselves in an exhausted state just doing the most simple of tasks. There is much going on for the brain to assimilate; eye focus, brain processesing all incoming stimulation and body balancing itself, is exhausting. Some discover they are deaf on the operated side and this is a learning curve in itself, but one that is easily overcome.
Your wife will be faced with her own set of challenges too. There is a new category to this site for the "Caregivers" and can be helpful to her. My recovery was helped along by my husband's patience (I was impatient and grumpy) and prodding (had to get up and perform exercises every hour on the hour for 6 weeks straight) to get my balance back. He had to learn to deal with my deafness, no talking from another room, no talking to me while I'm on the phone, trying to remember what side is my good side when in public so I can hear him better in stores, restaurants, keeping his mustache trimmed (he still is lazy about this) so I can see his lips moving (I learned to read lips), speaking clearly and slow, etc. This was a huge learning curve for him and frustrating time for me--lots of sighing on my part.
If your facial nerve is involved you may discover your taste is alterted for a short period of time, my taste came back after 6 weeks. I still have, on some days, numbness at the tip of my tongue, metal taste in my mouth or can't taste much. This comes and goes and I'm used to it, doesn't bother me much.
Feel free to ask anything you want knowing we are here to help.
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Hi, Roger -
my AN was on the left side too, but larger than yours.
I've heard of St. Vincents in Indianapolis from someone on the forum, but who it was escapes me ??? I'll do a search when I have a little more time - need to get back to doing my work shortly ::)
It's probably a mute point, since your surgery is already scheduled, but did you look into radiation at all?
Also, if you get a chance, you might want to contact the ANA and ask them for their informational brochures. In addition to this forum, the brochures will help you come "out of the dark".
Jan
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Roger:
I'm sorry to hear of your recent diagnosis, but happy that it is a BENIGN tumor. The main difficulty lies in the location. Surgically getting to the tumor is the tough part. However, after 100+ years of doing this surgery, they have improved the technique to the millimeter. As Arushi said, your tumor is indeed small. If you look at outcome data, most side effects are directly correlated with tumor size (ie facial nerve damage, hearing loss, etc.). So you have two great things in your favor--the tumor is small and it is benign.
I know you're feeling a rush of emotions right now (we all can relate), but bear in mind that this diagnosis allows you the luxury of time. At that size, you have time to research options (ie watch and wait vs. radiation vs. surgery). By waiting, you may risk your hearing (if you look at 2 and 5 year data). You can have consultations with multiple surgeons to decide who you think is best equipped to do the job. Some general principles apply:
1. A team approach that includes a Neuro-otologist, a Neurosurgeon and a Neurologist (or equivalent to monitor the facial nerve and hearing nerve).
2. A team that does this surgery very often. I would say that both surgeons should have performed hundreds of YOUR SPECIFIC TYPE OF SURGERY. One of the problems is that sometimes you see a surgeon who recommends a specific surgical approach based solely on his or her training, not necessarily what is best for your tumor. You want to see a surgeon who performs all 3 types of surgeries(middle fossa, translabrynthe or retrosigmoid). Then you know that they are choosing the right approach for your situation.
3. Don't worry about the travel part, if you can't get good care locally, then by all means, go to where you can get good care. Flying afterward is fine as the cabins are pressurized.
Also, you might consider other options such as 'radiation' or 'watch and wait'. Steve has experience with CyberKnife (radiation), I believe and he had a great experience.
In sum, despite the news of a 'tumor in your brain', you're going to be OK. Education is essential to deliver a satisfactory result.
This website has been a great resource to garnish perspective on this whole issue. Feel free to contact me any time.
Best of luck.
Dufreyne
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I've looked at radiation options but it is not for me. I know it's a different type of radiation then what they use for cancer but I have to many family members get secondary post cancer from the radiation. Plus, I am not a big fan of it.
I don't understand the wait and see option. The way I see it your waiting for nothing good I prefer just to get it done and over with.
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I understand your position. I just want you to be aware of the 3 general treatment tracks---watch and wait, radiation and surgery. If you're fairly decisive on surgery, then there are three different 'approaches'--middle fossa, translabrynthe and retrosigmoid. Hopefully, your surgeon discussed the various options and his or her reasons for their proposed approach--as well as the potential side effects of each approach.
What you are trying to avoid is a rush decision on a small, benign tumor. That scenario has happened far too many times. If you fully understand all of your options and potential upside and downside of each option, then you will be best prepared for whatever outcome occurs.
Best of luck.
Dufreyne
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Roger -
sounds like you are comfortable with your choice of surgery and that's great. I had surgery myself, so I can't knock it.
As we like to stress here, treatment choice is a very personal choice. What's right for me, may not be right for you, etc.
In my prior post I just wanted to make sure you were aware that there are sometimes options other than surgery, since sometimes docs who don't believe in the "other options" tend not to mention them ::)
You are definitely informed, so let me be among the first to say congratulations on making your treatment decision. One of the very hardest parts of having an AN is now over - seriously.
Jan
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How long did you take to get back to work and normal activities?
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I'm an accountant by trade, so it's basically a desk job - nothing physically strenous.
I was back to work part time (half days) in 2 weeks and full time in 4 weeks. On the half days, I'd work in the morning and come home to sleep in the afternoon.
A lot depends on what your job entails and what your post op "issues" are.
My worst issues were balance and fatigue. The balance greatly improved in the first 3 weeks post op, but it wasn't perfect. The vestibular exercises my neurotologist had me do both pre and post op really helped. The fatigue stayed with me for a long time, though.
It's very important not to overdo. There are times you think you're back to "normal" and the fatigue hits you like a brick wall. Overdoing things also has the potential to set back your progress. Everyone recovers at their own rate and it's not a race. So listen to your body - it will let you know your limitations and how fast or slow you should proceed.
Jan
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Hello Roger!!
First thing first....Congrats on the new baby!!
Second you found a terrific sight!! I just found these outstanding people myself a few days ago!!
I am not here for me, well sort of for me, but my father (58 i somehow missed a birthday LOL) was diagnosed 2 weeks ago....his surgery is scheduled for Nov 4th. His tumor is in the moderate size.....he has lost his hearing in the left ear....as well as lost feeling on the left side of his face....forehead, cheek, nose, roof of mouth, tongue, bottom lip....
I have been dealing with the "what to tell the kids". I have 2 boys 6yr and 8yr. We live an hour away from my parents and the boys stay frequently with them.....I was not going to tell them much until we actually have our first consult with the surgeon coming up on the 24th.....but my brother told his daughter (6yrs) that papaw was having surgery.....and of course she told the boys!! I still havent gone into much detail.....I will let them know what it is and everything will be ok! I wasnt even sure of the ok thing until I found this forum..... :)
I can honestly say that your wife (if she wants) should read some post...ask some questions...Maybe you will find someone in your area that she can talk with....I did I found 2 members both had the same surgeon as my father will.....it has helped tremendously!!
I think knowing that you aren't the only one with AN or in my case dealing with a family member with AN has made what seemed to be so drastic and scary..... dealable (is that even a word?? :D) I know sharing the info with my father and my mother has helped them realize that yes life will change, but what's life without a challenge from time to time!! ;)
Good Luck with everything and remember you and your family are not alone!!! :)
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Roger,
I was back to work part-time at 6 weeks, full-time at 8 weeks. We are all so different however, that I caution you not to hold yourself to some standard. You will feel well when you feel well and not a moment before. I am now 3 months post-op and except for some minor side-effects I am back to my old self. Or my new self, depends on how you look at it.
Marci
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Roger, I agree with Jan and Marci. There is no set time... everyone's situation is different...don't try to push it too early. My doctors told me to expect to be off from work 4 to 6 weeks(which in my case was about right). I found that physically I thought I was able to go back to work just a couple of weeks after surgery, but I knew just by working from home that my concentration level wasn't near where it should be. If you're able to with your work, I'd also recommend what Marci and Jan did by starting off working half days and see how that goes.
Patrick.
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I think I need to find time to talk to the boss tomorrow. I think I may see if I can do the part time thing post-op for a couple of weeks. I do have some vacation saved up maybe I should take the last two weeks of the year off and start fresh the next year. I am very concern with the new baby on the way and the SSD. I am afraid of being alone and not hearing the baby cry at night. :(
I don't like the idea of my wife doing it all. >:(
Does anyone have any advice for this?
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Thank you everyone for posting back to me!
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Roger -
I haven't had a baby in the house for many years but IMO if you sleep on your bad ear you should have no trouble hearing the baby or anything else during the night.
I typically sleep on my bad ear and as a result I can hear the things I'm supposed to hear with my good ear - alarm clock in the morning, a sick kid coming into my room, the phone ringing, etc.
When I sleep on my good ear I truly am completely deaf. So when I really want a good night's sleep and I don't have to get up with an alarm, I always sleep on my good side.
See, there are some advantages to being SSD :D ;)
Jan
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Hi Roger,
Sorry I'm late in coming to this thread but I wanted to welcome you to this forum. It is a wonderful source of intormation and support, as you know. Jan has pretty well covered how you can best try to hear things while you are sleeping but I'm sure your wife will nudge you once in a while too when she just can't get up. :) You mention you are afraid of being alone at night and not hearing the baby cry. Does you wife work at night? If so, sleeping on your deaf ear is definitely the way to go -- turning the baby monitor up should help too. Even with hearing in only one ear, we as parents are attuned to hearing our babies cry.
Best wishes,
Wendy
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Hi , i have two boys and like you i wanted to protect them from worrying, i told them i was going in for a ear operation, but when it was all over i slowly began to tell them more details but i must admit i never once used the words brain tumour, i dont think they need this worry at such young ages.
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Hi Roger,
Your concern regarding not waking from sleep in case the baby cries was mine too, but different baby--my grandchild. I put her monitor next to my bed and turned up the volume, also figured the dog would alert me if my good ear were in the pillow. BUT, there are emergency device packs you can buy for the HH (hard of hearing)/deaf that will signal you with vibration and/or strobe light. Check into this through Hearing Loss Association of America (HLAA). It's possible they have a local chapter in your home town.
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My bad ear is left and I mainly sleep on my right side. :-[ But I will have to check into hard hearing monitor it worth a good look at it. Yes, my wife works nights well 3 nights a week anyway.
But, I have to vent a little bit. I got a call from my ENT while at work and they are demanding to be pay up front by the day of my surgery on the 30th. I think it sad that that doctor has had to result in this type of tactics just to insure they get paid. To be honest I just don’t have the money right now. With my wife’s OB appointments, her surgery, the hot water leak under my house, the multiple MRI’s, the kids flu, colds and other things has pretty much wipe out my savings. Now I have to scramble to come up with the money or wait until next year. But, if I wait it will be another $1100 dollars. This just sucks rotten eggs. >:(
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My bad ear is left and I mainly sleep on my right side. :-[
This is me exactly, but I now sleep on my left side. I still haven't adapted to that change though and I've yet to get a good night's sleep when I'm on my left. Being a single parent it's vital that I get up in the morning with the alarm; especially since my kids are famous for turning theirs off and going back to sleep ::) The devices Arushi suggested are supposed to be great; one of these days I'll have to check into one.
The issue with the doc wanting to be paid up front does suck rotten eggs - there's just no nice way to say it :P I understand the doc wanting to get paid, but money is so tight for everyone these days. Wonder if he'd agree to a payment plan.
Jan
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I have a "Shake-Awade" - I think the travel one - that I use when Dave is out of town or I am getting up early to go to the gym & don't want to wake him (well, when I use to go to the gym...). It works GREAT! My friend got it for me b/c when Dave traveled, I wouldn't hardly sleep at all b/c i was so afraid I wouldn't hear the alarm and oversleep - that just majorly compounded my problems since I wasn't getting any sleep AND Dave wasn't here to help me out (he does TONS). Most baby monitors have the "lights" and so I would wake up long enough to look at that & then go back to sleep when my girlies were babies.
Sorry about the insurance...that does suck rottem eggs!
K
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Hey Roger,
First of all, I'm sure you've done (and will do again) your share of things around the house. It's fine to let your wife take on what she can while you recover. You would do the same for her. It's in that line "in sickness and in health". ;) You can try to line up friends/family for the first couple of weeks (maybe less) to help out so she doesn't get overstressed.
I don't get the whole doctor thing. Does this mean you've no health insurance? Or did I misunderstand?
Best,
Marci
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I don't get the whole doctor thing. Does this mean you've no health insurance? Or did I misunderstand?
You know, I wondered about this too. Does the doc just want your share of the payment?
If so, he might be willing to go the installment route, since your insurance should pay the majority of his bill.
Jan
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I have insurance they just want me to pay on what they think I am going to owe them. However, if I over pay then they said they would send me a check for the difference but it could take 1 or 2 months for that to happen. So, just to fire back I told them I could pay them in a month or two but I can only give them and estimate on the time when that payment may be made.
Anyway she took the point and waved to upfront charge.
I think it a pretty sad state when the doctor office has to go to theses extremes.
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So does that mean that you DON'T have to pay anything and are good to go on the surgery???????
K
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I'm thinking that the doc's office backed down on the prepayment requirement and will let Roger pay monthly, after the fact. Therefore, Roger is good to go.
Am I correct, Roger ???
Hope so.
Jan
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I am very concern with the new baby on the way and the SSD. I am afraid of being alone and not hearing the baby cry at night. :(
I don't like the idea of my wife doing it all. >:(
Does anyone have any advice for this?
I was in the same boat last year. Surprisingly, even sleeping on the good side, I could hear my boy and would wake up most of the time. If I didn't, and it was my turn to get up, I got a not so subtle kick from mom to wake me up. I'm sure your wifey will do the same lol :D
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The back down all together. We found out the we had max out our family out of pocket and we still have other medical charges that the insurance company has not processed yet. So, it looking like we will have entire surgery paid for it at 100% by the insurance company.
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Excellent, Roger ;D Surgery must be "on" then for your regularly scheduled date.
My AN surgery was paid 100% by my insurance company and it was a good thing, since it cost in excess of $100,000.
My insurance company also paid 100% of my BAHA surgery and the processor (hearing aid), which cost about $46,000.
Although there are many times I curse my insurance company, there are also many times I'm thankful I have them.
Jan
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Both of you....LUCKY
<--- Not so fortunate
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Jan I wish my insurance company would pay for hearing aids. I asked and argued but they said no just the same.
So, the surgery is on for next week. For some reason I am very claim about it. I have been getting more upset when I think of the burden I am placing on my loving wife.
I also feel sorry for our unborn child. I feel like the focus has been on me and not the new baby coming and my wife. I also feel bad for my two girls now they seem to be ok but I know I’ve stress them out too more than they should be for their young age.
Then I feel guilty for feeling guilty if that even make since.
Sorry to hear about your insurance Chopper.
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Jan I wish my insurance company would pay for hearing aids.
Roger -
like most insurance companies, mine does not pay for conventional hearing aids. They paid for my BAHA processor because it isn't a conventional hearing aid. Without the titanium post implanted into my skull, the processor would be useless to me :P And it would be kind of dumb to have the post implanted and then not get the processor - defeats the whole purpose; although I have heard that some wacky insurance companies do this ::)
The key here is the BAHA is an implant. If you are interested in the BAHA make sure you make this distinction in your request and stress this terminology when approaching your insurance company. Also note, that if your insurance company covers Cochlear implants, they have to cover BAHA implants. Cochlears are for bilaterally deaf people (both sides); BAHAs are for unilaterallly deaf people (SSD).
Don't worry about the your two girls; they are so young, they probably won't remember much about this episode in their lives. Brain surgery is a big thing - IMO bigger than being pregnant (no offense to your wife) and I had twins. The focus rightfully should be you for a while. And by the time the baby is born the focus will be off of you and onto him or her and your wife.
I'm glad you feel very calm about your upcoming surgery. I felt the same way prior to mine and it helped me a lot.
Jan
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Calm is good Roger, all will be well. I assume you put your date on the AN calendar?
Marci
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I will added it to the calender. Surgery in 3 days.
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Roger -
I added it to the calendar for you so we could get our "best wishes" in on time.
I know the docs are Payner & House and your surgery is at St. Vincents. I'm thinking it's in Indianapolis, so that's what I put on the calendar. If I'm not right, please correct my entry.
Thanks and best wishes for a hugely successful surgery :) I'll be thinking about you and praying for you and your family on the 30th.
If you think of it, please ask your wife to update us - we sorry about our fellow forumites.
Jan
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I'll ask her. If she remembers everything I am asking her to do. Maybe I better start a list. :)
I had a cool thing happen to me today. A friend of mine from Germany sent me his good luck charm from when he was a little boy. He said you can't buy this little smurf figurine anymore and he took it from his personal collection to give it to me for luck.
I was personally touch by this gesture.
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Roger -
IMO there's a lot to be said for good luck charms; it was nice of your friend to send you such a special one.
My good luck charm was a special saying that I had made into a book mark. It goes like this:
What lies before us and what lies behind us are tiny matters compared to what lies within us (anonymous).
I read this saying several times a day before my surgery and for many, many months post op. It helped me get through. I hope your good luck charm does the same for you :)
Jan