Hello Fellow ANers! Canadian AN Translab Re-Scheduled to December 8, 2008

[MAlegant]

Hi and welcome Ken and Michelle,
Ken, to answer your question I think the best thing I did was go outside everyday, (with help of course).  I walked to the mailbox the first day, then halfway around the block the next, and so on.  At three months post-up I'm back to work and running nearly every day.  Minor side-effects are still with me but I'm doing great.  I also still have my hearing, amazingly enough.

Good luck to you.

(I'm not officially Canadian but I lived in Montreal for 6 years.  )

[Rivergirl]

I am not Canadian but I played Hockey and watched hockey most of my life so I feel close to the maple leaf.  I am sending good wishes for a Stanley cup win of a surgery!

[1cANAdian]

Hello everyone!

Feeling kinda wonky the past couple of days.  Best way I could describe it is short lived "brain shudders".  May be vertigo, but not sure. 

I'm sure this article is out there in the forum somewhere, but I'll put it here for those of you who haven't seen it yet, and are interested in a short article about Mark Ruffalo's experience with AN.

http://www.jsonline.com/story/index.aspx?id=801878

Cheers!

[tenai98]

HI Ken
Another Canuk here.  I'm late in welcoming you due to getting ready for ur winter season...Cutting wood, tending the garden, winterizing...all that good stuff.  We are an elite group as I'm sure you have discovered.  lol..The best of the best.
Again Welcome, and maybe we can connect when I'm in your area visiting my son.
JO

[joebloggs]

Hi Ken,

I'm not Canadian either (Australian) but I lived in Canada for a year and loved it!  I miss it and wish I was back there almost every day - except when my friends in Saskatchewan tell me the temp has been -40!  Also I don't miss waiting tables at the powerplant in the Uni of Alberta - hardly anyone used to tip, bloody students!!!!  I've just been diagnosed and am looking at a Translab around February sometime.  You said something about you were wondering how SSD has affected people post surgery - I'm wondering about that too, but have just found this site:

http://scansound.com/xcart/home.php?cat=269

it has headphones that move everything that is stereo into one headphone, which will be perfect for me...I'll be stuffed if I'm missing out on listening to my ipod properly post surgery!!  I'm going to get a pair (umm...so used to that, I meant to say I'm going to get one!) before I have the surgery so I'm ready to rock as I start to get better.  I'm also going to treat myself to a new Macbook and ipod soon - this is a big deal and I deserve a treat!!

Hope that helps!

JoeBloggs.

[Syl]

Hi Ken,

I'm not Canadian, never lived there, but I would love to visit sometime.

I made it through the first week after surgery by taking it one day at a time. As you probably know by now, we are all different and you just can't tell what postie life will bring for you. It's scary thinking of all the things that can happen during surgery and after surgery. I completely agree with Jan when she advises ANers not to sweat the unknown outcomes.

I'm glad that you are keeping a positive attitude. I found it has helped me greatly. Remember..one day at a time.

Syl

[Kaybo]

Ken~
Hey!  I did not have the luxury of obtaining 2nd or 3rd opinions because my surgery was such a rush-rush deal, but I would STRONGLY encourage you to see different Dr.'s to see their creditals and see if their personalities give you that "warm, fuzzy feeling."  Donnalynn is right that you send your MRI off for free phone consultations.  If I knew then what I know now, I would have definitely done that!!

K

[leapyrtwins]

Ken -

Donnalynn and Kay both have an excellent point.   Your AN is large and you definitely want to make sure you have the very best surgeon you can find.  You might want to talk to another doctor who treats ANs, or at the very least send your MRA results to House in Los Angeles.  I know your surgery is scheduled for November 3rd, but you should have enough time.  From what I hear the docs @ House are pretty speedy about responding to AN patients.  And you certainly can't beat a free medical opinion - doesn't happen too often here in the U.S. 

I don't know how things work in Canada, but lots of AN docs in the U.S. are now debulking large ANs through surgery and then following up with radiation to kill what's left.  The theory is that it helps save the facial nerve, which is always a big concern with AN surgery - especially when a large AN is involved.  I know Jim Scott, and a few others, had debulking and radiation, and it seems to work quite well.  Jim had a great outcome with this method.

I had a lot of faith, confidence, and trust in my two surgeons (neurotologist and neurosurgeon) going into surgery, and I may be going out on a limb here, but I don't get the sense from your first post that you have a similar feeling about your doc.  IMO it's imperative that you are 100% certain he's the "right guy" for you.  Afterall, we are talking brain surgery here.  Have you thought about asking your doc for a list of patients he's treated so you can talk to them about their experiences?   While no doctor can guarantee a positive outcome, it might be a good idea to get some feedback from the patients he's performed surgery on.

Jan

[leapyrtwins]

Oops!  Almost forgot to answer your question about the BAHA.

I decided to get one because I couldn't stand being SSD.  Yes, I know, lots of AN patients adjust and they do just fine, but I wasn't one of them.   I had a hard time adjusting from day one and couldn't wait to do something about my SSD.  In fact, I was asking my neurotologist as soon as I was conscious post op, and could comprehend the fact that half my hearing was gone, what he could do to "fix" this problem.   When I finally tried the BAHA demo I couldn't schedule the surgery soon enough - my insurance company had other ideas of course, so I spent 5 months fighting with them before they  approved it.

I found that SSD made me very grouchy and it wasn't one of those post-op issues that got better over time - like my balance or the intense fatigue.  I also realized the day my insurance company approved my BAHA surgery that being SSD was actually making me very depressed.  The day I heard the words "yes, we'll pay for the surgery and the processor" you would have thought I'd won millions in the lottery.  I was on cloud nine! 

Pre-BAHA I was tired of saying "What???" all the time.  It frustrated me and it frustrated my children.  Being SSD isn't a physical thing that others can see, so even though colleageues, family, friends, etc., knew my hearing was gone on my AN side, it didn't stop them from talking to me on that side.  I got tired of always saying "I can't hear you" or "that's my bad ear".  Having them ask "is this your good ear?" didn't thrill me either 

Since I was only 45 1/2, and I hope to live a long, long life - at least another 45 1/2 years - I decided there was no reason to just live my life this way.  I decided that if God wanted people to remain unilaterally deaf, he wouldn't have invented BAHAs.

Some people, my parents specifically, thought I was crazy to want to undergo another surgery.  And truth be told, I originally agreed with them - until I found out that the BAHA surgery was so minor compared to the AN surgery.  These same people also weren't too wild about the idea of a titanium post being inserted into my skull.  They also weren't too wild about the drill that would make the hole in my skull for the post either    But I knew it was right for me and felt that if others had a problem with it then that was their problem, not mine.

The BAHA has been a huge help in situations where someone on my "bad" side is trying to hold a conservation with me.  It's been a blessing in work situations where I now don't have to pretend I can hear what is being said.  I found with out the BAHA that I bluffed a lot - you know, smiled, nodded - and I often got strange looks since my responses weren't always appropriate to the question being asked    One of my biggest pleasures with the BAHA is being able to hear the bank teller at the drive-thru when she speaks to me.  I also no longer have to turn my entire body to hear sounds on my left side. which thrills me to death. 

The BAHA isn't perfect - and it's not like having your normal hearing back again.  Like most hearing aids, it doesn't work well in noisy, crowded rooms.  It also doesn't give sounds directionality - but at least now I can hear the sounds. 

Jan

[sgerrard]

What I was then able to do was send my MRA courier over night service to L.A House Clinic.

Hi Ken,

Here is a link for the House Clinic acoustic neuroma "hot line":
http://www.houseearclinic.com/acousticneuromaconsultation.htm

I agree with Donnalynn, K, and Jan, that for a large AN, it makes sense to make use of this resource. Besides being experts on AN surgery, they are also knowledgeable about other surgeons and hospitals, and know all the insurance systems well. You owe it to yourself to hear what they have to say.

Wishing you the best,

Steve

PS: Also two links from a post by 4 CM Northwest a while ago, to surgeons in Toronto:

Here is one of the world renown Julian M.  Nedzelski
http://www.sunnybrook.ca/team/member.asp?t=14&page=2152&m=207

Many on the forum have been pleased with this neurosurgeon: Dr. Rutka
http://www.surg.med.utoronto.ca/neuro/

[ppearl214]

Ken,

honestly, I have to agree with all about 2nd and multiple opinions....  and will also note here speaking to  many patients that have used a particular surgeon to get their take on it. 

ie: here, we have many that have flown to HEI (and I'm just noting this as an example). Many here (not all but many) will note their genuine pleasure with HEI.  I also personally know of some that were not pleased with HEI, thus... it is up to us to seek out patient referrals before we let anyone cut.  I insisted on speaking to patient referrals before any of my medical treatments that I am interested in pursuing.... I would also highly suggest you obtain patient referrals for any surgeon you are looking to use.

Just my 2 cents.
Phyl

[Jim Scott]

Ken:

I don't wish to be an echo or pile on, but I'm quite concerned about your situation, as you've described it.  As you probably know, I had a similar sized tumor and it was debulked and, 8 weeks later, radiated - with great success.  Frankly, I hope and pray that every AN patient has a similarly successful experience, whatever their choice of treatment.   Not every AN  case is amenable to the surgery-then-radiation process, but we all want the best possible outcome with the least amount of problems.  I'm sure you're no exception. 

On that basis, I strongly suggest you consider consulting the doctors at HEI in Los Angeles for that free MRI evaluation.  The stark reality is that AN surgery is painstakingly delicate and requires both experience and good judgment on the part of the surgeon to insure a successful outcome.  Many of us enjoyed that kind of surgeon and had good results.  Some did not and had unfortunate results.  I urge you not to just accept the only doctor available to perform your surgery, as if they were all the same or as if this was some simple, any-doctor-can-do-it procedure.  It is definitely not.  Remember, Ken, if things don't go well, you could be in for months, possibly years of very difficult recovery that could change your whole life and probably not for the better.  Although time is an issue, I would seriously consider doing whatever you have to do to obtain the money to have your surgery performed in the U.S., where places like the House Ear Institute have surgeons with years of experience and the fully recovered patients to prove their expertise.

The ultimate decision is yours, of course, but your acceptance of the 'local' doctor with no other consultations or real study of his patients recovery history seems a bit hasty.  Please consider other options.  We just want you to have the best chance at a good outcome to a very serious surgery and not take the first doctor that is available.  Take control of your health and look beyond the Canadian heath care system, if possible.  Saving money on brain surgery is not a good idea.  I'm sure 'donnalynn', who is almost a neighbor of yours, would be happy to steer you to U.S. facilities and offer you her story, if it might help.  She is a nurse and does have some 'inside' information, as most nurses do.

I trust I've not frightened or offended you in any way.  If I have, let me apologize in advance.  Like the other posters who came before me, I simply want the best outcome for you, Ken.  Nothing more, nothing less, so please consider the U.S. for treatment.

Jim

[lori67]

I'll just throw in that I hear California has an excellent AN Welcoming Committee.  It may not be an "official" committee, but what a nice bonus to get to meet up with some of our members while you're there!  And if you want to come to Nashville instead, I'll be sure to be the welcoming committee here!   

Good luck Ken.  We're all pulling for the best for you!

Lori

[ppearl214]

Hi Ken,

Just wanted to see how you are doing and to send my wellness wishes to you.  Will be cheering you on and we're here to support you.  Hang tough!

Phyl

[1cANAdian]

Hello Everyone! 

Things are going well (as long as I ignore my long hours at work  ). Surgery has been postponed to Dec 8th.

From a symptoms and emotional perspective, it is steady as she goes.  No changes.  Will be off to a Habitat for Humanity build this Saturday, and next.  So, symptoms are not preventing me from doing what I'd normally do.

Thank you for all your well wishes.  If life (and daughter) slows down a bit, I'll do some posting and participating on the site.  Will update calendar soon.

Cheers!!

Ken