Author Topic: This Week 6/13/10 in the AN World  (Read 2950 times)

Rich56

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This Week 6/13/10 in the AN World
« on: June 14, 2010, 03:44:33 pm »
Previously:

Carter (carter) after your CK treatment in Jan. 2009, it is great news to read that at your 18 month follow up on 6/09 your latest MRI showed that the tumor has shrunk, and is dieing. 

Mona (Anomar11) although your recent 18 month MRI results didn’t show shrinkage after your CK treatment, you did say the Dr. called it “stable” and “continues to show necrosis”, which means yours is dieing as well.  Excellent news.

Congratulations Carter and Mona, we hope your ANs continue/start to shrink and die off.

Kenneth (kenneth_k) we’re happy to learn that they finally stopped your CSF leak, and that your MRI results were clean.

Alexis (mom2cbnt) we were equally please that your husband Robert’s CSF leak was stopped as well.

Congratulations Kenneth, and Robert.  Hopefully that’s the end of your complications, and you can just concentrate on recovery.

Last Week:

Stefani (stef84) we’re happy your 6/2 translab surgical experience went so smooth.  Thanks for sharing your story with us.

Nancy (tweety) we’re glad your 6/8 middle fossa surgery went well.  We hope the tinnitus diminishes.

Angie we were happy to read that your husband Nate’s (Huber920) 6/9 middle fossa surgery went well also.  Thank you for keeping us updated, we know it isn’t always easy to do.

Congratulations Stefani, Nancy and Nate, our newest Posties.  We hope your recoveries are swift and without complication.

Nancy (NancyMc) it was really great news to read that your MRI, and JB’s (joebloggs) 1 year MRI (thanks Nancy) were both clear.  Time to enjoy the summer :)

Last Thursday 6/10 David (dpetty) celebrated 10 years since his AN removal.  Happy Anniversary David.

THIS WEEK:

Tuesday 6/15 Mark (Turnip) is having retrosigmoid surgery provided that a thin blood issue does not postpone the surgery.

Thursday Amy (amymeri) is having plastic surgery.
http://anausa.org/forum/index.php?topic=12192.msg140660#msg140660

Also on Thursday Jackie (Jackie), who has been W&W for the last 4 years, is having an angiogram for a brain aneurysm. 

Friday (dhsgbb) is having AN surgery.

We will keep you all in our thoughts and prayers for successful and uncomplicated surgeries and procedure.  We hope your recoveries go smoothly, and swiftly as well.

Also on Tuesday 6/15 Brian (Pooter) has a follow up appointment.  Brian we hope your Dr. gives you great news regarding your 5/25 MRI.  We know you could use some good news, sorry the Austin, and Houston deals didn’t work out.  Hang tough Brian.

The road of recovery is different for everyone, and we hope that as each day passes, the next one gets a little easier.

Have a great week everyone,

Rich & Scarlett
SML (Scarlett's) other half, she had - 1.5 cm x 2.5 cm Cystic AN - Right side
Retrosigmoid on 3/18/09 at MGH in Boston, MA. Dr. Barker & Dr. Lee of MGH/MEEI
no facial issues, SSD right side, balance issues to work on.
The AN Calendar is here: http://www.my.calendars.net/AN_Treatments

Jim Scott

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Re: This Week 6/13/10 in the AN World
« Reply #1 on: June 14, 2010, 03:58:20 pm »
Thanks for the weekly update Rich - and congratulations to Mona, Carter, Kenneth, Alexis and Robert on their successes this past week. 

Congratulations also to Stefani, Jacki, Angie & Nate on their positive outcomes and congratulations to Nancy and JB on their good MRI reports. 

Our thoughts and prayers go out (and up) for Mark, Amy, Jackie and the poster know as 'dhsgbb' as they (individually) face surgery this week. 

We all wish Brian an encouraging MRI feedback session with his doctor this week.  He deserves some positive news!

I wish all of our members a good week - and brighter days.  :)

Jim
4.5 cm AN diagnosed 5/06.  Retrosigmoid surgery 6/06.  Follow-up FSR completed 10/06.  Tumor shrinkage & necrosis noted on last MRI.  Life is good. 

Life is not the way it's supposed to be. It's the way it is.  The way we cope with it is what makes the difference.

grega

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Re: This Week 6/13/10 in the AN World
« Reply #2 on: June 15, 2010, 08:54:47 am »
Thanks Rich and Scarlett for the thorough report.

And wishing the best to all who face procedures this week!  Virtual hugs to all!

Greg
1.5 cm AN retrosig 11/04.
Drs. Henry Brem & Michael Holliday @ Johns Hopkins, Baltimore
SSD right. Tinnitus big-time, only when thinking of it.
BAHA since 7/20/10 ... really helps w/ hearing, specially after programming in subliminal message: "Hey, don't listen to your tinnitus!"

Pooter

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Re: This Week 6/13/10 in the AN World
« Reply #3 on: June 15, 2010, 07:52:13 pm »
Thanks for the mention, Rich!  Congrats to everyone who already had treatments/anniversaries/etc and good luck to those having upcoming treatments!

As an update, I had my 2 year visit with the doctor today.  Overall, as expected it went well.  So well, in fact, I don't have to return again (or get a MRI) for 2 more years!  Yea me!

Also, I had a hearing test..  And, *SHOCK* I was deaf in one side!  According to the audiologist doing the test that my AN ear "didn't even register on the equipment".  Heh.  I told her that going in but she still seemed to think that I would be shocked by those results.

Additionally, my doctor and I spoke about various options they have for SSD.  The audiologist and I did also.  Heh.  It's a really good feeling when I have more information about options than they do.  The audiologist was taking notes and said she was going to look some things up.  I attribute that to this forum, so thank you all!

Along those same lines, I demo'd the BAHA headband again this year.  What was different this year was that I knew what to expect, knew what to be looking for, situations to key in on to see if it was helpful, etc..  I can't say that there was a "wow" moment, however I could definitely tell that it was working (even without plugging up my good ear). 

Here's a picture of me in the BAHA demo:



I can't say that I've decided to go the BAHA route yet, but I was definitely impressed with the demo.  Even more so than last year.  I think, right now, the only thing(s) stopping me from committing to the BAHA is a) cost and b) the fact that my wearing a hat might be impacted by having a BAHA.  I specfically asked about hats with the BAHA to my doctor and he said that it really depends on where the final placement is. 

Overall, a good visit.  I was definitely pleased with the visit and outcome.

Thanks Jim and Rich!

Regards,
Brian
Diagnosed 4/10/08 - 3cm Right AN
12hr retrosig 5/8/08 w/Drs Vrabec and Trask in Houston, Tx
Some facial paralysis post-op but most movement is back, some tinitus.  SSD on right.
Story documented here:  http://briansbrainbooger.blogspot.com/

"I must be having fun all wrong!"  - Roger Creager

leapyrtwins

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Re: This Week 6/13/10 in the AN World
« Reply #4 on: June 15, 2010, 10:01:49 pm »
b) the fact that my wearing a hat might be impacted by having a BAHA.  I specfically asked about hats with the BAHA to my doctor and he said that it really depends on where the final placement is. 

Congrats on the clean MRI results, Pooter  ;D

I was @ a Cochlear coffee talk this past weekend and the topic of wearing hats and BAHAs came up - apparently it's a big concern (mostly for men).  The rep from Cochlear told us that if you have a favorite hat, it doesn't hurt to show it to your doctor prior to the surgery and ask him/her if he/she can place your abutment so that you can still wear your hat.  It's not always possible to accomodate these requests, but sometimes the doc can work it out. 

Jan
Retrosig 5/31/07 Drs. Battista & Kazan (Hinsdale, Illinois)
Left AN 3.0 cm (1.5 cm @ diagnosis 6 wks prior) SSD. BAHA implant 3/4/08 (Dr. Battista) Divino 6/4/08  BP100 4/2010 BAHA 5 8/2015

I don't actually "make" trouble..just kind of attract it, fine tune it, and apply it in new and exciting ways

saralynn143

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Re: This Week 6/13/10 in the AN World
« Reply #5 on: June 16, 2010, 05:46:56 am »
Thanks for the picture, Pooter. I don't know why, but I had somehow imagined that the trial headband was like one of those terrycloth bands that tennis players used to wear.

Does the headband hold the unit close enough to the skull to get a good trial? I would imagine that the real thing is significantly better.

Sara
MVD for hemifacial spasm 6/2/08
left side facial paresis
 12/100 facial function - 7/29/08
 46 - 11/25/08
 53 - 05/12/09
left side SSD approx. 4 weeks
 low-frequency hearing loss; 85% speech recognition 7/28/08
1.8 gram thin profile platinum eyelid weight 8/12/08
Fitted for scleral lens 5/9/13

Pooter

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Re: This Week 6/13/10 in the AN World
« Reply #6 on: June 16, 2010, 02:02:00 pm »
Jan, thanks!  I did talk to my dr about placement because of hats.  He said that the placement would be a little higher than where the demo sat because he wanted to stay clear of my craniotomy hole/scar but still in bone that was needed for the BAHA to work well.  He said if I had a favorite hat, I could see where it sat to see if it would interfere.  I haven't done that yet, but I'm in no rush.  :)

Sara, the demo was very tight.  It was weighted on the non-AN side with a pretty strong "spring action" to keep it VERY snug against your head.  After a little while, it because uncomfortable to wear.  So, in answer to your question, yes it seems to get the next best thing than an actual implant in terms of being able to make that bone-headband connection.

Thanks!

Brian
Diagnosed 4/10/08 - 3cm Right AN
12hr retrosig 5/8/08 w/Drs Vrabec and Trask in Houston, Tx
Some facial paralysis post-op but most movement is back, some tinitus.  SSD on right.
Story documented here:  http://briansbrainbooger.blogspot.com/

"I must be having fun all wrong!"  - Roger Creager