Author Topic: Boise, Id - One sided?  (Read 3332 times)

jenij

  • New Member
  • *
  • Posts: 3
Boise, Id - One sided?
« on: November 16, 2008, 04:09:55 pm »
Hi.  My husband found out on Fri. Nov. 7th that he has an AN.  I have more info than I ever wanted to have in my little brain. He is 36 years old with a 2.35 AN.  I am very concerned that we are in such a small city as far as care for AN is concerned.  Our surgeon sounds great and confident he can do the surgery.  We have opted for the translab because facial nerve preservation is more important than hearing when given the choice.  But the surgeon said that in both translab and retro, that the facial nerve isn't exposed until later in the surgery, after the tumor has already started to be removed.  In everything I have read, the translab exposes the facial nerve early on.

So, the main question, do we travel 11-15+ hours to go somewhere that has a reputation in doing AN procedures, or stay home.  We would most like to recover at home rather than out of town.  Our Boise surgeon suggested that if we travel to have the surgery, we should stay there for 1 month so if there are complications, it can be dealt with at the place where surgery was done and not with the ones we didn't choose.

Anyone have experience in Boise?

Anyone use a surgeon that isn't known for AN surgery, but is great at all surgergies, uncluding AN?

Some advice and reassurance would be great.
Thank you,
Jeni

JerseyGirl2

  • Hero Member
  • *****
  • Posts: 513
Re: Boise, Id - One sided?
« Reply #1 on: November 16, 2008, 09:03:38 pm »
Hi, Jeni,

I'm sorry that your husband has been diagnosed with an AN. I hope that you'll both gain lots of useful information on this forum from others who've gone through similar experiences and that your husband will have a wonderful outcome! I think just about everyone would agree that having confidence in your surgeon (or radio-surgeon if you decide to go the radiation route) is of utmost importance, and that you should definitely select someone who has lots of experience with acoustic neuromas. This is certainly a situation where you want to go with a highly experienced AN specialist.

I had the translab procedure and agree with your conclusion that the facial nerve is identified early on in that procedure and, like you, am confused by what your surgeon implied. I was also a bit baffled by your surgeon saying that if you travel for surgery you should plan at the outset to remain there for one month just in case there are complications. I traveled from my home in New Jersey to a well-regarded AN medical establishment on the West Coast for my surgery and was told that I should be able to fly back home ten days after surgery (this is pretty much their standard procedure); it worked out well for me and I indeed returned home 10 days after surgery. That being said, no reputable surgeon will release you to return home before you're ready, and it's certainly a possibility that you'd need to extend your stay. What I'm questioning is your surgeon's assumption that you should just expect to stay somewhere for a month.

Obviously everyone has his/her own opinion about traveling for surgery vs. staying close to home. There are wonderful AN surgeons throughout the country, in or relatively near just about everyone's hometown. My local otolaryngologist recommended the place I went, my subsequent research convinced me that it was the best place for me, personally, to go, and I would do exactly the same thing again without any hesitation. My husband was able to accompany me, our only child is in graduate school (so I didn't have to leave any small children at home), and I didn't have any other constraints that would make travel difficult. This isn't true for everyone. I was also feeling absolutely fine (my only pre-diagnosis symptom was hearing loss) so I found the trip to be lots of fun, with plenty of sightseeing and activities during the four days prior to my surgery (it was a wonderful distraction) and felt well enough after my hospitalization to continue the "vacation" (although at a slower pace) before we returned home. I can certainly understand that a "vacation with surgery" does not appeal to everyone -- but it worked well for me.

One more thing -- if your husband hasn't received a second opinion, you might consider sending a copy of his MRI and audiology report to House Ear Clinic in Los Angeles. Detailed information is on their website. A physician will contact you a day or so after receipt of the MRI and give you a free consult over the phone.

Best wishes to you both as you continue your research! Please keep on posting here with any questions, and let the forum know as you make progress and reach a decision.

Catherine (JerseyGirl2)
Translab surgery and BAHA implant: House Ear Institute, Los Angeles, 1/2008
Drs. J. House, Schwartz, Wilkinson, and Stefan
BAHA Intenso, 6/2008
no facial, balance, or vision problems either before or after surgery ... just hearing loss
Monmouth County, NJ

sgerrard

  • Hero Member
  • *****
  • Posts: 3475
Re: Boise, Id - One sided?
« Reply #2 on: November 16, 2008, 11:01:27 pm »
Hi Jeni,

I did a search on the forum, and came up with exactly one post on Boise: this one.  :-\

As Catherine said, the official recommendation of the ANA is "ANA recommends treatment from a medical team with substantial acoustic neuroma experience." The board did spent a lot of time carefully reviewing it before they adopted that statement. It sounds like you have a good surgeon, but if he doesn't have much experience with ANs, the risk of side effects is generally higher.

You might consider Salt Lake City - Andrea (andrea in SLC) had surgery there last Thursday. If you can fly, though, the House clinic in LA is certainly worth considering too. Here is a link to their web page on ANs: http://www.houseearclinic.com/acousticneuromaconsultation.htm

Sometimes people just go with the surgeon in their home town, and it works out fine, and House isn't perfect either. Now is the time to look into all the possibilities, though, so you can make the best choice for you, and give your husband the best chance for success.

And to you and your husband, welcome to the forum. :)

Steve
8 mm left AN June 2007,  CK at Stanford Sept 2007.
Hearing lasted a while, but left side is deaf now.
Right side is weak too. Life is quiet.

sher

  • Full Member
  • ***
  • Posts: 173
Re: Boise, Id - One sided?
« Reply #3 on: November 17, 2008, 12:15:05 am »
Hi Jeni
I live in Utah and I had Cyberknife in Salt Lake City. Have you ruled out radiosurgery? You are welcome to contact me if you have any questions about it.
Sher
1.2cm x 0.6 cm extracanicular component (7 mm) 05/08/08
MRI in AUG 08  showed 30 % growth
Having CK 9/30, 10/1 and 10/2/08
1/12/08 MRI shows swelling

leapyrtwins

  • Hero Member
  • *****
  • Posts: 10820
  • I am a success story!
Re: Boise, Id - One sided?
« Reply #4 on: November 17, 2008, 06:17:46 am »
Jeni -

my two cents; I'd look into another opinion.  This is brain surgery afterall, and you definitely want someone with lots and lots of experience in removing ANs.

If it's unrealistic for your husband to go to House Ear for his surgery due to distance or financial concerns, there should be some place closer to you where the docs have the proper qualifications and experience.

Good luck,

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

Omaschwannoma

  • Hero Member
  • *****
  • Posts: 777
  • Life is a journey, not a destination
Re: Boise, Id - One sided?
« Reply #5 on: November 17, 2008, 07:14:25 am »
Yep, I concur with Jan and Steve, this IS surgery that requires the utmost of skill.

Make sure your surgeon HIMSELF, has performed hundreds if not thousands.

The area of the brain they work on is difficult at best to get to, making it a "delicate" surgery, then once in there near the brainstem or sometimes on the brainstem makes it more delicate.  The vestibular, hearing and facial nerves are packaged together tightly making this part of the surgery once again a delicate procedure.

IMO, get the # of surgeries your surgeon has performed and get another opinion from someone who has the experience.  Like Steve says the post op issues will be minimal if your surgeon has the experience.

Sorry if this "blunt" and scary, but truly you need to know upfront the details in order to make the best decision for the best outcome.

Welcome!
1/05 Retrosigmoid 1.5cm AN left ear, SSD
2/08 Labyrinthectomy left ear 
Dr. Patrick Antonelli Shands at University of Florida, Gainesville, FL
12/09 diagnosis of semicircular canal dehiscence right ear

Cheryl R

  • Hero Member
  • *****
  • Posts: 1801
Re: Boise, Id - One sided?
« Reply #6 on: November 17, 2008, 07:45:43 am »
Jenii, Seattle could be a possibility.     I am in Iowa and the Univ of Iowa is very well regarded for AN surgery.       There are several who have been on the forum and most have come and left the forum as did well.             You would have to fly into Cedar Rapids which is around 18 miles away.    There has been a lady from Alaska who had her surgery there.                     I have NF2 and have had multiple surgeries.
Just make sure the surgeon does ANs on a weekly basis where ever you go.           Good luck.
                                                Cheryl R     I
Right mid fossa 11-01-01
  left tumor found 5-03,so have NF2
  trans lab for right facial nerve tumor
  with nerve graft 3-23-06
   CSF leak revision surgery 4-07-06
   left mid fossa 4-17-08
   near deaf on left before surgery
   with hearing much improved .
    Univ of Iowa for all care

andrea in slc

  • Jr. Member
  • **
  • Posts: 87
Re: Boise, Id - One sided?
« Reply #7 on: December 10, 2008, 10:35:38 pm »
Jeni, sorry I just saw this, I'm just getting back into more time on the computer.

I'm Andrea in SLC (as Steve kindly pointed out  ;) ) and I had surgery here in Salt Lake City. It's a bit of a travel for you, but not too bad. The neurosurgeon who was part of the team has done over 250 surgeries, and I was SO pleased with both Dr. Reichman (neurosurgeon) and Dr. Warren (neurotologist). Please pm me with any questions you have, I'd be more than happy to help out!

Andrea

 


anything