5 years Post Op - Wanted to share good experience

[TR4guy]

HI Everyone,

5 years ago I was so thankful to have this community to help me figure things out.
I'm a tiny bit ashamed because I don't feel like I've given as much support as I got.

The truth of the matter is, I had a fabulous outcome and was pretty much able to go back to an almost 100% normal life.
(SSD is a minor annoyance, but you get used to it and compensate to the point were you really don't even notice anymore)


The other day I found myself warning someone with newly discovered health problems:

 "Those forums are wonderful tools with great resources and great people.  But I must caution you, they might give you a skewed view of patient outcomes.  I say that because I think that there are a lot of people like me who have great results and then don't stay active in the forums.  The other folks who have ongoing problems obviously stay active for a much longer time.  They are searching for solutions and sometimes venting their frustrations.  So it may lead you to believe that there are a greater percentage of patients who have complications and issues than there really are."

I'm not sure I'm conveying my message effectively...
I guess I'm trying to say ... If you are newly diagnosed and are looking here for information... be aware that LOTS and LOTS of people go on to have perfectly normal and wonderful lives.

Maybe I was just really lucky...
My expectations were that my post operative life would be much more adversely affected.

Then again, maybe my results are more commonplace than I realized going into the surgery.

Hope yours are too!

Cheers,

Scott T.

[sunny]

Scott,

Thanks for your post.
I think I understand just what you mean, and I agree.
It was great of you to post, and I'm glad you feel great.

Take care,
sunny

[bethtretrault]

Thank-you for posting good news. I am about to have retro sig at MCV in Richmond in November and I find myself searching here for the good stories and reading them over and over because I am getting more and more anxious. Very glad you are doing well.

[Mei Mei]

Thanks for posting Scott.    I've always wondered how things went as I was in touch with you before and on your blog during and after.    I saw you at the local support meeting in DC.   I am happy you are better off than I am having stayed away from Baltimore.
Mei Mei

[ANAuD]

Thank you so much for this! After reading the facebook groups, it would seem as if everyone who has surgery ends up with permanent facial paralysis, balance issues, and a miserable existence. After reading their posts and complaints, I had convinced myself that I will NEVER have surgery or radiation for my W&W AN, since their post-op/post-radiation experiences sound so much worse than my occasional vertigo issues. But it makes since, those who have successful results go back to living their lives and don't hang around on the forums or facebook groups, so what we see is certainly skewed toward those who have continued complications. Thank you for giving me hope that if I do end up needing surgery, it will not be the end of the world and that I have a chance at a normal life afterwards! 

[opp2]

I must admit, I haven't been in for quite since I've posted to the web site. Maybe over a year. I had my 5th anniversary this past July while I was knee deep in the operations for the PanAm Games in Toronto (and area). I too had a very positive outcome that included SSD as the only permanent side effect. And it's true, I found that I got busy with livin' and stopped stopping by.

I have a few contacts from here that I still keep in touch with on FB so I know how they are doing.

Take care everyone.

[ANnIdaho]

Thanks for sharing your good experience!  True, the forums are a great support but once you are doing well you don't really need the support anymore.  Glad you came back to share your good news.  Very encouraging to us on the other "side". I go in for Middle Fossa surgery at Keck with Dr F and Dr G on next Tuesday and it's so nice to hear good outcomes!

[michellef08]

Great post - I feel the same way!! I had my tumor removed 2.5 years ago with Dr. Schwartz and Dr. Friedman at House, and they preserved my hearing, and I had zero balance or facial issues! I had an amazing outcome, and want to share my knowledge/story in case it can give anyone hope!  I continue to attend the DC local support group in case anyone is newly diagnosed and needs advice! I love going, it makes me feel great to be able to share my story. I was also only 27 when I had my surgery, so I am always hoping I can catch young people with similar situations.

[Troutbc]

I totally agree! There are so many AN patients with great outcomes. I had my surgery 6 months ago, and I am doing totally fine, in fact I'd say I'm completely back to normal. SSD is the only annoyance, but it's true, you just deal with it, it isn't that big of an issue. I was back to work after 8 weeks, and am back to my normal routine. One surgeon I interviewed said I would never play tennis again, well let me tell you my tennis game is better than ever! (I'm glad I didn't use that surgeon!) Work is fine, restaurants are fine, weddings are fine, late nights are fine! Of course I have days where I am more tired than others...but seriously...to anyone facing an upcoming AN surgery, realize the first 2 months will be hard, but if you have experienced surgeons, chances are you will get back to a completely normal routine and be FINE! You will notice most of the "best outcomes" came from major hospitals: House, Mass General, Johns Hopkins, Mayo. It's worth traveling to get the best possible outcome!

[feline]

How about stanford being one of the best with dr Chang and dr Blevins ?
Feline

[TR4guy]

How about stanford being one of the best with dr Chang and dr Blevins ?
Feline

How about it? 
What makes you say that? 
I'm not saying Stanford isn't one of the best.  I'm honestly asking if you think they are?  and if so Why?

5 years ago when I was obsessing about where to go for surgery, I seem to recall Stanford being a noted leader for some of the radiation options.
I may not have considered them for conventional surgery because they were so far away from me.

When I first started looking, I was looking at options geographically close to me.
I looked at Georgetown... I liked them.  I liked the Doctors.  I was seriously considering going there.  Honestly if they could have gotten me in more quickly, I might have gone there.  (I got to a point where I had been obsessing about the AN so much that it consumed my life.  I didn't want to have to wait weeks and weeks more to keep obsessing about it.  But that was my problem.)

I considered Duke... they have a good reputation, they aren't far from me, and the information I had showed that they did more of these surgeries than most of the other places.

When I got to Hopkins... which is very close to me... initially they seemed to trump everyone. 
Even closer.  Even better reputation.  and I believe the surgeon told me " the only place that does more than us is House out in California."

Once I contacted House Ear Clinic for a free consultation... everything fell in to line for me and my situation.  (it may not work as well for other people I realize)

From my understanding... House is running away the most experienced with treating Acoustic Neuromas.   Like... not even close.

That's my recollection and my experience.
It could be inaccurate.
Things could have changed in the last 5 years.
(I get the impression that some of the folks from House went over to USC)