Author Topic: Recently Diagnosed!  (Read 5970 times)

leapyrtwins

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Re: Recently Diagnosed!
« Reply #15 on: June 23, 2011, 03:28:24 pm »
Hi, Victoria and welcome to the Forum  ;D

AN surgery is certainly "big" but you'll get through it.  Once it's all said and done it's not as scary as it is in the beginning.

My surgery (retrosigmoid done a little over 4 years ago) did remove the entire tumor.  It also left me SSD (single-sided deaf) but that was the worst of it - and that's saying a lot.  I opted for a BAHA implant 3+ years ago and currently wear a BP100/BP3 processor from Cochlear.

My BAHA has been a Godsend and I can't say enough wonderful things about it.  If you have any specific questions, don't hesitate to ask. 

Good luck on your AN journey,

Jan
« Last Edit: June 23, 2011, 03:29:55 pm by leapyrtwins »
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

vsfunkhouser

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Re: Recently Diagnosed!
« Reply #16 on: June 23, 2011, 06:21:22 pm »
Jan, It says that your tumor was 1.5 at diagnosis and 2.5+ when removed.  Did it grow or were they just unable to really determine how big it was.  The doctor said that mine is 1.7 per the MRI and indicated that because of where it was located that he was concerned that they wouldn't be able to get all of the tumor with the retrosigmoid approach.  He indicated that he didn't feel that the middle fossa was an option.  I begin to feel confident with my decision and then I read about someone else's experience and worry that I should consider the other options.  He told me we could talk about hearing devices once I had recovered from the AN surgery but then I've read where some have the implants during the initial surgery.   :-\ 

I am anxious to get what ever I am doing done!  Thanks for your warm welcome and the comforting words in regard to the surgery.  It seems scary but when I consider what some of my friends have been through with various illnesses and procedures... I know it I will be fine!  Have a great eveing... I look forward to talking with you again sometime.  Victoria

leapyrtwins

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Re: Recently Diagnosed!
« Reply #17 on: June 23, 2011, 06:47:21 pm »
My docs (neurotologist and neurosurgeon) both felt that my AN had grown between my diagnostic MRI and my surgery (approx. 6 weeks later), but neither had any idea why, since the majority of ANs are very slow growing.  Guess I was just lucky  ;)

Mid-fossa isn't usually an option for most of us by the time we are diagnosed; translab & retrosigmoid or radiation are usually what most of us are offered.  Those who are "eligible" for mid-fossa (due to size & location) should go with that approach if they opt for surgery because it offers the best chance of keeping the hearing.

What is most important in making your treatment decision is what you are comfortable with; go with your gut.  You don't want to second guess yourself after the fact.  Everyone's journey and everyone's recovery is somewhat unique to them; you need to do what is best for you

I chose retrosigmoid because I had decent hearing in my AN ear and I felt it was worth a chance to try and save it.  I knew the odds weren't on my side, but I didn't want to choose translab and wonder if I had my docs automatically destroy what hearing I had left if they could have possibly saved it.  Long story short, my hearing nerve was wrapped around my AN and the choices were to destroy the nerve and remove the entire tumor or keep the nerve and leave part of the tumor.  My neurotologist made the choice to remove the entire tumor and I totally support that decision; it's what I would have told him to do if I weren't asleep at the time.  4+ years post op I don't show any signs of regrowth, which reinforces his decision in my mind.

Some docs do combine the AN and BAHA surgeries, but some docs (like my neurotologist) don't like to combine them.  No rhyme or reason that I know of - just the doc's personal choice. 

I had my implant 9 months after my AN was removed - although I would have had it much sooner if my insurance company would have cooperated - and it was a very simple surgery.  It was done on an outpatient basis and in my case it was done under local anesthesia; absolutely nothing like my AN surgery.   

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

 


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