Ten Days After Diagnosis and Making Progress - BoogerectomyRe-Scheduled

[Debbi]

I am now 10 days post diagnosis and am feeling pretty well armed for whatever comes next.  Special thanks to the people on this forum for being so supportive, offering to share their stories, and providing wisdom in what feels like a really crazy time.

I have already heard from Dr. House at HEI and his take was that I'd need translab with major goal to preserve my facial nerve.  Apparently this sucker is long and is "impinging" (nice word) into the brain.  Okay, that freaked me out a little!  I am scheduled to see two other teams this week, including the Golfinos/Roland team at NYU. 

It is sounding like surgery may be my best option, but I am still keeping fingers crossed that I might be a candidate for GK - we'll see. 

I am thinking that if I have translab, I might consider having a BAHA "installed" at the same time.  Any experience/thoughts on this?  I still have pretty good hearing in my right (AN) ear - 75% speech discrimination - so expect that it would take some time to get used to SSD. 

It's amazing how much I've learned in a short amount of time - two weeks ago I didn't even know what an 8th cranial nerve was, and now I've got a tumor on one! 

Hanging tough in NJ!

[leapyrtwins]

Debbi -

for only 10 days post diagnosis, you are handling things very well.  Being told you have an AN, once you figure out what that is, is very shocking.  Making a treatment decision is very stressful, but it sounds like you are going about it the right way. 

House has a very good reputation, and I've heard a lot this past week about Golfinos/Roland so I can tell you that you are consulting with doctors who have a lot of AN experience.  Make sure you look into GK as well as surgery if that is an option for you.  I had surgery, but lots have had GK and are very happy with their decision.

Some doctors don't do the BAHA surgery at the same time that they do the AN surgery, so if you are thinking you'll go that route, talk to the doctors about it.  I had my BAHA implant 9 months post op (would have done it much sooner if I wasn't waiting on my insurance company) and I'm finding it is one of the best things I've ever done.  If you have to have yours post op, don't worry - it is a short, simple procedure and IMO it's not painful at all.

Let us know when you reach your final decision,

Jan

[lori67]

Hello Debbi - from a fellow Jersey girl!

It seems to me, if you have Translab and are able to get the BAHA implant at the same time, it would speed things a long a little.  I didn't have my BAHA implant until 9 months after my translab and I would have like to have had it sooner.  I guess it's ultimately up to the doctor, but I'd ask about it.

Sounds like you are really doing your homework and have lots of information in your arsenal.  That will help a lot!  (We Jersey girls are so smart....).

Good luck with your decision making and keep us posted on your progress!
Lori

[Jim Scott]

Hi, Debbi:

It sure sounds as if you're on top of this AN thing and have a good attitude, which is crucial.  I'm impressed.  Must be that Jersey air! 

Translab surgery should be effective and having the BAHA implanted at the same time seems reasonable, if the surgeon agrees.

It really is amazing how rapidly we can learn about something when it's important to us, and having access to the internet is invaluable in acquiring knowledge about a relatively rare condition.  It had to be a lot tougher for AN patients 20 years or so, ago when you had to almost totally rely on the doctor with little-to-no personal knowledge of what you were dealing with or what options you may have had.  Outcomes tended to be less successful, too.  If anyone has to have an AN, this is the best time for it, so to speak.   

We all wish you the best possible outcome for whatever approach you ultimately decide upon to address the AN, Debbi.   

Jim

[Debbi]

Thanks to all who posted - the words of encouragement are invaluable!

I think that, most of the time, I am doing pretty well.  There are, however, moments when I am scared, angry, in denial, etc.  I also find that my attention span is about that of a gnat and I am likely to forget what I'm doing while I'm actually doing it!  This is all part and parcel of stress, I know.  Still, it is disconcerting at times.

I am a huge believe in humor, and that is the primary reason why my husband and I decided (within three days of diagnosis) that this invader needed a name - we picked Ethel.  (No reason, it just kind of seemed right).  Now, I can blame "Ethel" when I get cranky or forget things - it  helps to make it less scary.  My brother in law, who has a great capacity to find humor just about anywhere, made a litle sign for us with a picutre of a henchman and it says "Death-el to Ethel".  It hangs in my office and serves as a constant reminder that humor is great medicine!

And, as bad as this seems at times, I am ever so aware that other people go through far worse things in life.  One of my dearest friends is fightin an incurable cancer - that helps put this into perspective for me.  Yes, it sucks, but it could suck SO much worse!

Thaks again to all the wonderful people on this forum.  I am SO glad I found you!
Deb

[leapyrtwins]

Deb -

I like your attitude - maybe because it's similar to mine 

Humor has definitely gotten me through many difficult times in my life - as I told one of my docs after my surgery - I couldn't live without it.
I can also relate to your "others have it worse than I do" perspective.  Not a day goes by that I don't thank God that I walked away from my AN without serious issues - my SSD doesn't count. 
 
I have no doubt that you are on the right path in dealing with your AN.  You'll make your decision, follow through with it, and start getting on with your life.

Deciding on a treatment did a lot to relax me and ease my mind; I hope it does the same for you.  Put yourself into the hands of whomever is going to perform whichever procedure you choose, and have faith,

Jan

[robynabc]

Thanks to all who posted - the words of encouragement are invaluable!

I am a huge believe in humor, and that is the primary reason why my husband and I decided (within three days of diagnosis) that this invader needed a name - we picked Ethel.  (No reason, it just kind of seemed right).  Now, I can blame "Ethel" when I get cranky or forget things - it  helps to make it less scary.  My brother in law, who has a great capacity to find humor just about anywhere, made a litle sign for us with a picutre of a henchman and it says "Death-el to Ethel".  It hangs in my office and serves as a constant reminder that humor is great medicine!

Hi,

I am sorry you are going through this but do know that chances are you will get through this just fine.    I just thought that I would let you know also that my son after diagnosis made a joke of the MRI of the tumor, he and my ex tried to match it to the shape closest state.  I think they decided it was the shape of Alaska.  I can remember getting mad and telling them that wasn't funny.  But really it was and it was a way to let off steam.  Now that it is over, it is funny.   

It is strange but our surgeon was extremely cautious and it sort of freaked us out.  He did not have much of a sense of humor and he was very careful to tell us the worst.  He is a caring and very gifted, experienced surgeon but the bedside manner was sort of terrifying.  So, later at one of Eric's follow up appointments, Eric was telling him that I was worried about him being cleared to drive because he didn't have much of a voice and the surgeon made a joke about making hand gestures. LOL  After the stress of the surgery was over even the surgeon was making jokes.  I guess my point is HUMOR HELPS.  Good luck.  I am sure you will be fine.  Peace and Love and Rainbows.

Robyn

[sgerrard]

Did someone mention BAHA and humor in the same post? Oh, boy. 

Deb, I do hope you get a chance to consider radiation. Is probably the the best shot at preserving your hearing, and at 75% recognition, yours is good enough to make it worth hanging onto if possible. 18 mm, even if it is heading into the CP angle, is well within the normal size range for radiation treatment.

The only real drawback I see is that you wind up with an ordinary hearing aid, like the one I will be trying out in a few weeks. They are high tech enough, but they still just sit on your ear - or in it. The BAHA, on the other hand, is a hearing device mounted on a post that is stuck into your head.

As Jan and Lori will confirm, I am very jealous of this, as nothing is cooler than having a post mounted in your head. I am almost tempted to see if I can get my hearing aid mounted that way. There are additional delicious details involved in the initial covering, and the daily cleaning rituals, as noted in other threads. See, for instance,

"My BAHA Hat", http://anausa.org/forum/index.php?topic=6035.0, or
"I can't remember!!! (BAHA)", http://anausa.org/forum/index.php?topic=5917.0

From my point of view, you can't lose. Either you have radiation and keep the hearing, or have the trans-lab and get to wear a BAHA. 

Steve

[Debbi]

Well, gosh, Steve, when you put it that way...   

Hey, thanks again to all of you for the sense of humor! 

I am meeting with Dr. Golfinos at NYU later this week, as he does both GK and surgery.  Still hoping to have options, but whatever happens - happens!  And, hey, having a hook to hang things on might come in handy...

Deb

[leapyrtwins]

Deb -

glad to hear you're seeing a doc who does both surgery and GK.  Although I picked surgery, there's a lot to be said for radiation - and as Steve suggests for an AN your size it might be the right choice for you.

Let us know how it goes,

Jan

[lori67]

Debbi,

The hook to hang things on might work - but if you were planning on it being magnetic - don't get too excited.  I was hoping to be able to stick a refrigerator magnet to mine so maybe I wouldn't keep forgetting my shopping list at home when I went to the supermarket.  No such luck.

It (or the processor) did set off the alarm at Best Buy the other day.  They thought they had just forgotten to deactivate the sticker thing, but it went off again so I had to show them the thing stuck to my head.  I think they were a little confused!  Yeah, I'm shoplifting things by snapping them to my head - that's the only reason I have this metal thing in my skull!

Lori

[leapyrtwins]

Seriously, Lori    The alarm actually went off    OMG, my kids will be so embarrassed if this happens to me.  Then again, it might get them to stop bugging me about taking them to the store so I can buy them things.

Who knew that the BAHA will not only let us hear better, but it has the potential to save us countless dollars by keeping us out of the stores LOL

BTW, I think you have some great marketing ideas (magnetic hook, antennae, Dawn detergent, etc) you may want to contact Cochlear America and see if you can patent some of them.

Jan

[lori67]

It was weird, because the alarm went off the first time we were at Best Buy - I try not to go in there much - it always costs too much money - but I went again last Saturday and was all prepared for it to go off again on the way out - and it didn't.  Very strange - but I think I'll use it as an excuse to stay out of there anyway!

You know, I think I have some brilliant ideas too.... so far you're the only one who agrees though.... 

Lori

[Debbi]

Well, who knew that the BAHA has so many advantages/uses!! 

I have my first face-to-face with a team yesterday who do both CK and surgery.  They confirmed what HEI said that I am not a candidate for radiation because "Ethel" is pressing into my brain.  Oh well.  Looks like translab or retrosig for me and Ethel.

Apparently Ethel is shaped kind of like the Hiroshima mushroom - she pops out of the canal and fills up all the remaining space.  It was actually pretty interesting to have the neuro guys explain the MRI in detail to us.  It also seems that Ethel has a cystic center - anyone know anything about this?  The neuros didn't seem to think it was any problem and might even make it easier to "collapse" the tumor.

I must say that I was completely exhausted after yesterday's appointment - my brain was FULL of info (not to mention an AN...).   My husband, who is my rock, was with me and tooks tons of notes.

My next appointemnt is at NYU tomorow - looking forward to this because I have heard so many good things about Golfinos.  Wish me luck!

hugs to all,
Deb - still hangin' tough in NJ

[Esperanza]

Hello Debbi,

So sorry to read about your situation, it is a shock isn't it.... 
I am sure you will be able to make the right decision once you have all the relevant information in front of you.   Has anyone mentioned any form of hearing preservation surgery or is that out of the question because of the AN's position?  It is a shame its pressing on your brain already... 
Mine looks mushroom like (or top heavy ice cream cone!)  .  Don't know about the cystic centre... have you been on to the cyberknife website - it is a good source of information where you can post questions....   http://www.cyberknifesupport.org/forum/

Good luck with your appointment tommorow.

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