Back from Symposium

[MLB57]

Hi Katie!!! I'm wondering if this scenario was discussed: What is the best radiation treatment for prior surgical patients w/re-growth to protect already weakened facial nerve yet effectively stop the growth??? Wondered if anything like that was discussed...   (PS--so sorry I won't see you again in Aug for our brunch!!  Well, next time after that for sure I hope!!!   Regards, Mary from MA

[Battyp]

MLB I don't recall anything specifically but can honestly say I think I missed that one. Was playing with the Baha test band.

NF your comment makes no sense to mark.

Flyersfan how come you did not identify yourself?  Geesh did you miss me in my pirate gear? 

The last two symposiums have been in june and july...cheryl  r do you know if this a typcial time set?

[Brendalu]

Capt Deb,

I've been on Topomax for six months and it has made a difference for me.  I take 50mg in the am and 50 mg before I go to bed.  They don't help a headache once you have it but they do help prevent them.  I have gone from five to six "trainwrecks" a week to one or two.  Tell your doctor to give you the information to get the meds free or reduced because you have used up your drug coverage.  McNeil is the manufacturer and the cost for 30 100mg is about $160.00.  My pharmacy gives me 60 50's for my copay of $50.  It is considered a tier 3 level drug.  I hope this help.
Brendalu

[krbonner]

Hi Katie!!! I'm wondering if this scenario was discussed: What is the best radiation treatment for prior surgical patients w/re-growth to protect already weakened facial nerve yet effectively stop the growth??? Wondered if anything like that was discussed...   (PS--so sorry I won't see you again in Aug for our brunch!!  Well, next time after that for sure I hope!!!   Regards, Mary from MA

I don't remember regrowth really being addressed at all, which is unfortunate.  You should send email to ANA to propose that as a seminar topic in 2009 to help other patients.

Katie

[Cheryl R]

There was a session on recurrent tumors on Sun which I was scheduled to go  but I changed my mind and went to the emotional impact of AN instead.       There might have been some info in that session.      I would have to look up which dr was doing that session.
    In regards to the question about past symposium dates.     The last 3 have been in June toward the last of the month.          I was at the last 2 and read about the 2001 one as I had that first fateful MRI on July 6th,2001!                                   Cheryl  R

[HeadCase2]

katie,
  Many thanks for your symposium notes.  I wasn't able to go. 
Regards,
 Rob

[leapyrtwins]

MLB I don't recall anything specifically but can honestly say I think I missed that one. Was playing with the Baha test band.

So, battyprincess, what was your impression of the Baha test band?  I've yet to get an opportunity to try it.  Feedback, please . . .

[Patti UT]

Capt Deb,

I've been on Topomax for six months and it has made a difference for me.  I take 50mg in the am and 50 mg before I go to bed.  They don't help a headache once you have it but they do help prevent them.  I have gone from five to six "trainwrecks" a week to one or two.  Tell your doctor to give you the information to get the meds free or reduced because you have used up your drug coverage.  McNeil is the manufacturer and the cost for 30 100mg is about $160.00.  My pharmacy gives me 60 50's for my copay of $50.  It is considered a tier 3 level drug.  I hope this help.
Brendalu

Brendalu,
  I'm Curious to know how long it took you to get used to the topomax. My doc prescribed it to me for the brainwrecks and after 4-5 days I stopped cuz it was making me feel so strange.  I hear it has a good side effect of weight loss though.
Sorry I missed the symposium, would have loved to meet everyone.
patti UT

[Static]

For what it's worth, I'm also on topomax and have been on it for about 9 months now and it really didn't take much for me to get used to at all.  I was started at a very low dose and gradually increased in small increments.  I currently take 150 mg 2x daily but still have an occasional major headache and small daily headaches, especially when I have a sinus infection or during a major weather change, but nothing like they were when I wasn't on it.   Unfortunately I didn't get the side effect of weight loss which I would have been quite happy with but am quite content with it just helping with the headaches as it was intended! 
~Karen

[Brendalu]

Patty UT,
I felt strange for about a week (floating, not really with it).  After that I settled down and because the headaches weren't coming as quickly or as hard I kept on taking it.  I too did not have the much anticipated weight loss...........................
A friend takes it and lost 30 lbs the first six weeks.  I was very jealous. 
Brendalu

[vcschaub]

Katie-

Thank you so much for sharing your notes. I was disappointed at having to cancel my plans at the last minute. Chicago is my husband's home town. I definitely plan to attend the symposium there in 2 years.

Thanks again, your notes were great!!

Viki

[redgrl]

Im looking for more info on the trans ear. I didn't get to try the baha but i am not really sure if i want anymore hole in my head. Michele how do you like yours?

[Captain Deb]

regirl--type transear into the search feature and a few really good threads on it will come up.  There are a few forum members who've had good success with it and a few who couldn't manage it. I sold a big painting today (YEAH) so will put the $ in my Transear Cookie jar unless I can swap a painting for one--the inventor has his Audiologist practice and factory just over the mountain from me and I'm calling for an appointment soon!

Capt Deb

[MLB57]

Hi Cheryl and (my lovely daughter's name!!) and Katie--Thanks for the info--is there anyway I can get any info from discussion regarding re-growth?? I have growth (continued from residual left in 2001) and was all ready to have GK w/Dr Noren in RI (years of experience and  one of the nicest and best) but Mass Gen (Boston, MA) Chief Radiation Dr Loeffler advocates FSR (25 sessions as he said 50% chance GK would further harm my facial nerve) so now I'm scheduled for FSR to begin Sept 10...  At this point I guess it doens't matter but I'd still like more info... (Read all Dr L's articles on pubmed.gov but nowhere saw the 50% mentioned)... Dr Noren says no way...   Regards,  Mary from MA

[krbonner]

Mary from MA -

Audio transcripts (Cd and mp3, I believe) of all of the sessions will be available soon.  They said it would take a few weeks to get through the production process.  Keep an eye out on the ANA website, or contact the ANA office in Atlanta.

Katie