cat scan finally scheduled!

[venus-p-off]

Hi out there..it's me again...i just wanted to let you know i finally got called for my cat scan...i'ts scheduled for friday afternoon and the test for auditory brain response is scheduled for the 30th of this month so i'm hoping that my neuro will be able to let me know how we are proceeding with these tumors after these test results are in...i figure i should know more by the middle of july...i've been doing a lot of research with regards to surgical removal and i think i'm leaning towards translabyrinthine method because i am thinking it's safer than other options...i know it will make me deaf but the other options cannot guarantee i will retain hearing so why go through a riskier surgical process with no guarantees? i am also requesting mri of my neck and spine on my next neuro visit because i have a history of spine/neck problems...wish me luck...i'll keep you posted if anything new happens...thanks so much
love/hugs
kate (venus p off)

[J]

Hi Kate,
I had an AN partially removed via retrosigmoid approach in an attempt to save my hearing. The attempt failed. 2 years later I had the remainder of that tumor removed via translab. I also got an Auditory Brainstem Implant at that time. The tumor was completely removed, but the implant electrodes slipped and consequently the device does not work for me. I will try again on the other side when I have to have it removed. I had my second surgery at the House Ear Institute in Los Angeles, CA. I am very happy with my treatment. You may have come across their website. The AN information is great. You can access it at http://www.houseearclinic.com/anpage1.htm
I think that if I had to do it again, knowing what I now know, I would skip the attempt to save my hearing and go with the translab. Just my experience.
Have a good day.
Jeff

<small>[ June 19, 2004, 09:00 AM: Message edited by: J ]</small>

[venus-p-off]

dear Jeff: thanks for replying...i hope you are doing well...i'm doing pretty good so far... it's too bad the retrosigmoid surgery didn't work out for you...it's funny how it works for some yet not for others...it's so unpredictable...i am still leaning towards translab approach...i haven't researched much on the implant device for hearing certain noises ...i do wish you well on the next attempt to implant it...i'll have to do some research on that topic...it's amazing how this disease educates us...my next hurdle is the ABR test then hopefully i will know how the surgeon plans to proceed...i may seek a second opinion too...thanks again for your post...
love/hugs
venus (kate)

[kani2327]

hey venus, have u ever considered getting gamma knife aka radiation first? because i still had the left hearing before i went completely deaf from surgery and so i opted for radiation because there was a chance that it could save your hearing. i was willing to take that chance. so, i first did radiation on my right since it was already deaf and if anything were to happen, it wouldn't make a big difference anyway, and luckily it did stop the tumor growth. and has since been stopped for three years. however, when i did radiation on my left tumor with the good hearing, the tumor just continued to grow causing decrease in hearing plus other problems which is why i had to get it removed.

i don't know whether i should of done radiation on the good side first to have it treated earlier or if radiation sparked the tumor to grow because i had good results on the right and so why didn't it do that on the left side, who knows. however, in the end, i still did surgery and trying other options first don't seem too bad. i think surgery should be your last option, but that's just my opinion. i also got the trans approach cuz my tumours were too large and so it would be too difficult to do the other approaches anyway. plus i don't think u get to decide which one to do, the doctors usually do the one they think is best.

anyways, i hope whatever happens it goes well.

good luck!

<small>[ July 08, 2004, 10:01 AM: Message edited by: gracie79 ]</small>

[venus-p-off]

Dear Gracie: thanks so much for your reply..i have read a bit about gamma knife treatment and have also read a few success stories of people who had good luck with this procedure...i will have to do more research with regards to this treatment before i decide on translab...i do believe a person has some say with regard to what approach is best for them...i plan to check this out too because if surgery is needed, i will not allow retrosigmoid or mid fossa....i'm more comfortable with translab method....

my hearing tests went very well...they told me that the muscles in my right ear have ceased to function but my hearing is still well within normal range...

my next appt. with the neuro is scheduled for the 23rd of july...i will get information regarding my cat scan and hopefully he will tell me what method of treatment the neuro-surgeon has in mind...thanks again for posting...i'll keep you up to date on what happens after the 23rd...
take care and thanks so much...
love/hugs
venus (kate)