Gamma Knife at Siteman Cancer Center Washington University St. Louis

[jr]

Hi, just wanted to share my experience with others that may be contemplating their options. . .I was diagnosed with an acoustic neuroma about the size of an olive.  It was on my left hand side near the brain stem.  I found out after going to the doctor for hearing loss in my left ear.  I went to see Dr. Chole at Wash U and he explained the three options of watch and wait, surgery, or gamma knife. After talking with him I was convinced that surgery was going to be my best option and that I should get it done asap.  He set up an appointment with the neurologist, Dr. Chicoine where I had additional discussions of the options.  Before that appointment I did plenty of research, including a lot of postings on this site, and became much more educated on the Gamma Knife options.  Ultimately GK was my choice and I was treated by Dr. Simpson, the radiologist and Dr. Chicoine.  That was January 2006 when I had the Gamma Knife surgery. . .the halo was a little annoying for the procedure but I was back to work the next day with only a slightly black eye.  My hearing is still the same as it was before the Gamma Knife and I get annual tests to verify I still have about 70% good hearing.  My tumor showed to be shrinking when I did my follow-up in November 2006 and again in November 2007.  In fact, my neurologist cancelled my appointment to discuss the latest MRI results and said the tumor continues to shrink and I won't need another MRI for 18 months. 

I read that this site can be a magnet for negative comments/events so I just wanted to share a something positive. . . believe me when I first was diagnosed I thought I was going to die. . . this site, any many others gave me the community support I needed to get through the whole ordeal and now two years later I want to say "thank you" to everyone out there and stay strong!

Kudos to the Dr's and Staff at Washington University in St. Louis for their tremendous work and support.

jr

[leapyrtwins]

I read that this site can be a magnet for negative comments/events so I just wanted to share a something positive. . .

jr -

I have never found this site to be a magnet for negative comment/events and am sincerely sorry that you read that somewhere.

Thanks for sharing your experience.   I'm glad that GK worked so well for you.

Jan

[ppearl214]

Hi jr and welcome. Good to see you here and thank you for sharing your experience re: your AN journey and GK. I'm sure it will be most helpful to many that seek out this info.

I have to agree with Jan... this site is not a magnet for the negative.... in all honesty, we try not to sugar coat and share "realities"... some are good and some are not.  Yes, on occassion, there is the spirited debate about this or that, but we make all efforts to make sure that all is respected.... so, we deal well with the good, the bad, the fugly.  Like you, we try to be "realistic" in presenting info regarding our own experiences... and I'm tickled all has worked out great for you. We love to hear the success stories and your story is so truly appreciated. 

Naw, the only time it gets negative around here is when someone steps on my toes without checking me first..... that ain't a pretty sight.... JoeF will attest to that one!  Watch out for him... he bites!

(Joe, hit me later for that)

So, again, welcome... it is great to see you here and looking forward to further participation.  Truly....

Phyl

[Sheryl]

Actually I think that people with negative comments and events tend to speak up more often than people with positive comments and events.  How many times have you written or called a store/company with a complaint as opposed to the number of times you will let them know how pleased you are?  I actually think there's an even mix on this board, maybe leaning more towards the positive.
Sheryl

[jr]

Glad to hear that negative is not the norm. . .I picked it up from the following thread but am happy to hear others feel different. .. .

"

There does seem to have been a few of those radiation regrowth posts lately. Some may be swelling, or at least not definite growth, but some are regrowth.

This forum has a tendency to be a magnet for the negative experiences, for both radiation and surgery. It makes sense, I guess. They say no news is good news, and that gets turned into good news is not news. I always appreciate it when people post their good results, but those threads are usually short, and often the good news is just a single post in some other thread. We are just regular people, and people like the drama of bad news. Plus those are the people most in need of support from the rest of us. So don't take the number of posts as a good statistic on the success of either surgery or radiation.

I hope your anxiety calms down as you get accustomed to the situation, and that you find the information you need to make your decisions about what is next.

Best wishes,

Steve"

[sgerrard]

Hmm, it would appear that I said that. 

That post was a reply to some one who remarked that they had seen a lot of reports on regrowth in this forum. I was trying to say that the frequency of such posts is not a good measure of how often regrowth occurs, since people are more likely to post when things go wrong, and they want some support or advice. I think a lot of the successful outcomes slip off the radar, as people go on about their lives.

It was just a poor choice of words. I did not mean negative comments, only that we tend to discuss problems and issues that people are having.

Hope that makes it clearer.

Steve