It's OUT and so am I

[Brookes]

Just giving my report.  I don't want to appear insensitive to those who have suffered more than they should through their treatment but I think it's important to note, especially for those who are new/relatively new here, that this can go pretty well if the AN is in the right condition and your docs are good ones (obviously both very important requirements).  The short story:  I had translab surgery for a 1.4cm AN with baha implant on Thursday (7/22); doctors from House Ear Clinic at St. Vincent Medical Center in LA.  Took about 5 hours, they got 100% of the tumor and I had/have no facial symptoms.  I was discharged from the hospital yesterday (7/26) and I'm not nearly "normal" yet but improving rapidly every day.  Definitely looking up.

More details/thoughts if you're interested...

I've seen enough praise on this site to know that they don't need any plugs from me but I'll do it anyway:  House Ear is as good as it gets.  From the great care to the personalized treatment in their facilities to the hospital follow up, I've always felt comfortable and confident.  And that doesn't cover the unbelievable assistance they gave me with insurance:  They took over the entire approval process for my out-of-network insurance.

I've read that the first few days after surgery are sort of lost days.  That was certainly the case the first 24-36 hours.  Totally underwater when awake; nausea, headaches and fatigue are overwhelming.  But by Saturday morning I was doing much better, a little walking with a PT.  By Sunday I was walking around the halls regularly and getting balance and stair therapy.

Eating well, I think, is important to early improvement and hospital food is no way to stimulate an appetite already stunted by nausea and general malaise.  I didn't understand until too late that I was on an unrestricted diet and could have had food brought in.  As it was, cheerios and frozen blueberries ended up being a treat.

I know it's not really a desirable option for most women, but I got a #1 buzz cut two days before surgery and it was a good idea.  Makes the shave easier and you don't have to worry about protecting the sutures for the first couple of showers:  I don't have enough hair to care if it's dirty.  (Sorry if that's TMI.)  So I look like a prison escapee but I can live with that.

More than a few minutes on the computer is making me a little dizzy (so this is taking a while, real time) but getting better.  TV for a couple hours can work if not too stimulating.  I've read for an hour at a stretch two or three times.  And I've had several 5-10 minute walks.  I can definitely see a return to work, at least P/T from home, in another week or so.

I have an excellent/ugly photo of my noggin that I'll post when I get my cell phone back (wife won't even let me hold it yet).

Cheers

[Jim Scott]

Brookes ~

First, let me congratulate you on a successful AN removal surgery and second, our collective thanks for posting your story.   Although I had a large AN and it was debulked, then radiated, my surgery/hospital experience was very similar to yours in many ways, minus the nausea and headaches.  The fatigue was massive but relented fairly quickly, although I didn't feel up to much for at least a week after coming home from the hospital.  Once I started to feel better, I was gung-ho to 'get my life back'; walking regularly and basically pushing myself.  I was 63 at that time, so I wasn't foolish about pushing myself but I wanted so much to be 'normal' again that I was eager to prove to myself that I could do the things I used to do, pre-surgery. In time, life went back to normal and folks stopped asking "how are you?  I have hair so I skipped the shaved head option and within a few weeks, the surgical incision was invisible.  Within 8 weeks, it seemed to have disappeared.

I'm pleased to learn that HEI has yet another satisfied customer and, again, I'm pleased to read about your good outcome and that your recovery is going well.

Jim

[leapyrtwins]

Brookes -

congrats on being a postie!  Glad everything went well for you.

Although I didn't have my surgery @ HEI, my experience sounds a lot like yours.  My docs were top-notch and I had a great outcome.  In addition, my docs were in my "own backyard" which was a definite advantage to me.

I had a BAHA implant nine months after my AN surgery and can't say enough great things about it.  I hope you enjoy your BAHA as much as I enjoy mine.

Best,

Jan

[Brookes]

Brookes ~

First, let me congratulate you on a successful AN removal surgery and second, our collective thanks for posting your story.

Thanks!

I have hair so I skipped the shaved head option and within a few weeks, the surgical incision was invisible.  Within 8 weeks, it seemed to have disappeared.

Sorry; I wasn't very clear.  I don't CURRENTLY have enough hair to worry about, because I cut it all off.  In general, I've got enough hair to believe that proper hygiene isn't just a good idea; it oughtta be the law. 

[Brookes]

I had a BAHA implant nine months after my AN surgery and can't say enough great things about it.  I hope you enjoy your BAHA as much as I enjoy mine.

I hope to.  I spent a lot of time researching and investigating but the demo really sold it for me.  I think (hope) I understand the limitations and can live with them; they're certainly better than the alternative.

Even though I had only mild to moderate hearing loss, I had pretty poor word recognition so it seemed the right choice to go translab and try to preserve the facial nerve.  It turned out that, based on the position and shape of the tumor, there was virtually no way that the docs could have preserved even my not-so-great hearing.  This ended up being the right way to go for sure.

[leapyrtwins]

The BAHA demo sold me too.  I tried it 4 months after my AN surgery (retrosigmoid) left me SSD.

Just a note to newbies - not much hair is shaved for AN surgery.  Brookes' decision on the "buzz cut" was a personal choice.  Lots of newbies heading into surgery worry that their head will be completely shaved; it isn't.

Jan

[Jim Scott]

Just a note to newbies - not much hair is shaved for AN surgery.  Brookes' decision on the "buzz cut" was a personal choice.  Lots of newbies heading into surgery worry that their head will be completely shaved; it isn't.

Good point, Jan.  I've noticed that there are erroneous ideas floating around about how much hair is shaved for the AN operation.  My point was that the incision, which wasn't hard to keep clean, quickly healed, the small amount of shaved hair grew back fast and within less than 8 weeks nothing was noticeable, even with my relatively short haircut (see my avatar photo).  For ladies, even those with shorter hair styles, it's even less so.  However, some guys (and on extremely rare occasions, women) chose to shave their hair pre-op for the purpose of keeping the incision site clean.  Actually, that's not a bad idea, either, just a different choice.  (Suum cuique).

Jim

[jaylogs]

Glad to hear everything went well for you!  I also had the pleasure of going with HEI under Dr. Brackmann.  On the topic of haircuts, I heard from one of the nurses right before I went in for my procedure that Dr. Brackmann always insists on shaving ALL the area he's gonna cut into. I guess the other surgeons at House aren't so radical in that regard. Anyways, hope you continue to improve. Don't be surprised though, if things go back a few steps in the coming weeks as you continue to heal.  More often than not I have heard of people doing really well for the first couple of weeks and then things change. Just listen to your body and don't overdo it!! Good luck!
Jay

[opp2]

http://sphotos.ak.fbcdn.net/hphotos-ak-snc4/hs046.snc4/34651_460819941272_541641272_6360927_381093_n.jpg

not sure if this will work with my privacy settings, but this is my 'scar'..not so much hair shaved here...

[Brookes]

*sigh*

OK, I'm going to vent.  I stand by my comments but now regret bringing up the hair issue at all.  I was PATENTLY CLEAR by the tone of the original post and by using the word "option" that this was a personal choice.  You know, I wouldn't mind if we could have a spirited debate about to cut or not to cut.  That might be fun.  But the focus of the comments on my post was on editing/clarifying MY EXPERIENCES.

Don't be surprised though, if things go back a few steps in the coming weeks as you continue to heal.  More often than not I have heard of people doing really well for the first couple of weeks and then things change.

I am certain these are well meaning comments, so I am equally certain you don't realize how insensitive they are.  Why is it necessary to temper the positive feelings of an AN patient with excellent results less than one week out of surgery?  EVEN IF WHAT YOU ARE SAYING IS TRUE?!  If I was to give your comment any weight I'd immediately make this request:  Please provide some medical/statistical data to support your claim and provide links or current references.  To say "I have heard" is statistically meaningless and unfair to me or any other pre- or near post-AN patient.

Sorry for editorializing, but I have an ongoing frustration with my perception of an attitude that persists on this message board:  That members with small post counts are not entirely credible and their posts should be subject to clarification/editing (not by mods but by subsequent more senior members).  Of the three congratulations I received here, ALL of the posters attempted to clarify my personal account of this experience, which was VERY CAREFUL to explain in the opening paragraph the limited way in which it could apply to others.  But I think you can see this attitude displayed in my short post history, and most of all in MANY threads on this entire board system (I have read dozens).  I'm sure many/most of you will believe me to be mistaken.  But I've participated/lurked on message boards with far more vicious posters and general atmospheres that are less intimidating than this one.

I came here for two things.  To research AN conditions and treatment, and to try to make a small contribution or two to repay that research opportunity.  Hopefully I've offered a little (probably not in this post!).  I found this website and message board to be an invaluable tool and I want to thank you all for contributing and wish you the very best in your respective recoveries.

Edited to add:  No, I'm not grumpy because I'm 6 days out of surgery.  I'm like this all the time, but I'm also incredibly thrilled that I've progressed as much as I have so quickly.

[Jim Scott]

Brookes ~

Let's just forget about the 'hair issue', which is pretty minor in the larger scheme of things. Instead, I'll do a bit of editorializing. 

I'm sorry you have a perception that members with large post counts treat those with lesser post counts as inferior in any way.  I hadn't noticed that but it seems to be glaringly obvious to you and that is unfortunate because it clearly taints your opinion of the ANA discussion forums.  I can't speak for Jay ('jaylogs') but I'm sure you realize that that Jay didn't actually intend to discourage you.  I would guess that he was just trying to be realistic and preparing you for any possible reversal in your recovery.  That can occur, usually if you overdo it because you're anxious to resume your normal, post-AN life.  I've read posts from post-op AN patients that had that unfortunate experience.  That may not be scientific but it is real.  Of course, I would hope that doesn't happen to you. 

As a support site for AN patients, the message board posters uniformly attempt to be encouraging and positive but we also try not to be smiley-faced and unrealistic, as if nothing bad can ever happen to anyone who is experiencing a good recovery. On balance, I think the positive posts outweigh the negative by a huge margin and if you've done a lot of post reading, as you claimed, that should be obvious.  If it is not, and you actually consider the folks that post here as 'intimidating', I really regret that but, after posting here for over 4 years and reading thousands of posts, I simply cannot agree with the perception.  Let's just leave it at that. 

Having editorialized as much as is prudent, I'll, again, offer you my hopefully non-intimidating congratulations on your successful surgery and splendid recovery.  I trust it will continue apace.

Jim       

By the way, I'm not grumpy, either, just garrulous.  I can't help it, I was always this way.

[leapyrtwins]

Brookes -

sorry if you took offense to comments on this thread - or elsewhere on the Forum - I assure you no one intentionally meant to offend you.

We're all on equal ground here; there is no competition.  We all have similar, yet somewhat unique, experiences on our AN Journeys and we are here to help each other. 

Jan

[cin605]

Congrats on your postie status......I am sure nothing said was ment to offend......i think its justa warning not to over do when on steroids!They can make you feel  pretty good ...then pretty bad....really happy and then really sad.
Take care....

[Lizard]

Brookes,
You wild thing!  I love it, keep that attitude throughout your recovery and in my opinion you will be ahead of the curve! Not that I want to comment on what you've said directly but, bring it on...as somewhat of a spitfire myself I appreciate your honesty.  And remember we're not here to judge, we're here to share our experiences and help you with yours. 
Oh and welcome to postie land! 
Keep on healing,
Liz

[yardtick]

Brookes,

Congratulations on a successful surgery, unfortunately I wasn't as lucky as you!  I had very real headaches and facial pain from the moment I woke up and my Dr looked at me like I was crazy.  My surgery was Sept 2006, and I didn't find this forum until July of 2007.  With everyones encouragement and kindness helped me to survive.  Others had to deal with my very issues and through this form I was able to find a caring and outstanding Dr @ the Toronto General Hospital in Toronto, Ontario Canada.  You see there are people from all over the world who post here and we have become a family.  Like in every family you cannot sugar coat things. Reality sometimes sucks!!! 

I'm not grumpy person, sacristy yes, funny yes, modest sometimes, caring all the time.  Maybe you need to take a breather and come back in a few months and encourage newbies, tactfully that some people have little or no symptoms after surgery and fully recover.  Remember we are all different, experience things differently and that is what makes us all unique, no two snow flakes are alike. 

Blunt and to the point in Canada,
Anne Marie

PS I love this forum and our family here.  Whether one fully recovers or one has pain and other issues, we are all in this together....Thank you for letting me say my peace!!