Author Topic: My Story, My questions, Please help!!!!  (Read 10092 times)

Pooter

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Re: My Story, My questions, Please help!!!!
« Reply #15 on: February 03, 2009, 01:31:23 pm »
TP, Good point.  I had forgotten about that, but I did all that legal stuff the week before surgery also.  Luckily, I have a lawyer friend that did it all for free.  :D

Jan, you've never been to forum-jail?  Hmmm..  I guess being smited on the nose a few times doesn't constitute jail.  ;)  I bet Lori has been there, though.. Heh

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

NL

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Re: My Story, My questions, Please help!!!!
« Reply #16 on: February 03, 2009, 01:48:30 pm »
There's a group of Los Angeles-based House alumni and forum members (David, Lainie, Nancy, and a couple of others) who occasionally get together to greet House patients (who are on this forum) at some point during their stay. This group formed a while after my surgery so I didn't get to meet them, but those who have say that they do an amazing job at providing good cheer and comfort! I'm hoping that one of them will find this thread and get in touch with you.

Hi Sonja,

I wrote a long response to your post late last night and lost it when I went to post, so I sent you a quick PM instead.  :) As Catherine said, we would be happy to meet with you before your surgery to share our experience or answer any questions you may think of later. Though I see my forum friends have already done a fantastic job of filling you in!

Thanks, Catherine, for the nice comments. Since you did have your surgery first, your on-line support was a great comfort to me!  :)

Nancy L
1.6 cm left AN diagnosed Oct. '07
1.9 cm on 2nd MRI, May '08
Retrosigmoid surgery at House Clinic/St. Vincent's on 8/6/08
(no post-op dizziness, nausea, facial or balance issues)
Thankful for a fantastic team of doctors - Dr. Rick Friedman, Dr. Marc Schwartz, & Dr. Michael Stefan

Sonja

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Re: My Story, My questions, Please help!!!!
« Reply #17 on: February 03, 2009, 07:53:52 pm »
I am so appreciative of your taking the time to answer my questions and wish me well. That in and of itself is a great help going into surgery. I do realize that each and everyone one of us will have a different AN surgery experience. However, I am so inspired by the outcome of your surgeries.

I appreciate the information regarding the accomadations at Seton Hall. I am looking for a hotel close by for my parents. I would hate to be uncomfortable. I also have a better idea what to pack.  I am ready to get this darn thing over with and to be on the other side joining all you wonderful guys and girls.

Yes, I did think about the business of a Will. We had an attorney draw up a Living Trust a few years ago. I have to get it out and review to ensure everything is alright. Thanks for mentioning this. It is business and needs to be addressed.

I have not asked the doctor's about a BAHA. I know some of you have decided to get one. It appears most folks are happy with the BAHA. My concern with it was wearing my hear up or in a ponytail. The piece you screw into the bone anchor seems large. If you have one how have you dealt with this sort of thing?  What do you do if you want to perm or color your hair? Just thinking if  it may be better for me to just deal with SSD. Heck, I guess I am use to it since I have no servicable hearing in my right ear.

Thanks again for your time,
Sonja

Symptoms 2005
AN diagnosed January 2007
Watch & Wait until now
Surgery (Translab) scheduled February 18, 2009 HEI (Dr. House, Dr. Schwartz, Dr. Stefan)
No servicable hearing in affected ear

cindyj

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Re: My Story, My questions, Please help!!!!
« Reply #18 on: February 03, 2009, 09:31:14 pm »
Hi again, Sonja.  Since you're looking at hotels, thought I'd let you know about the one my mom stayed in and then I actually went to also once I was out of the hospital.  It was the Kyoto Hotel and Gardens.  It's only about 3 miles from House/St. Vincents and there is a free shuttle to and from the hospital.  There were a number of good restaurants around that really were a life saver to me!  It was not cheap, though...it will take me quite some time to repay the credit card bill, but it was a very pretty and peaceful place - they really do have a garden on the roof of the hotel!  I also felt like it was a very safe place for Mom.

I am one that, so far, have decided I do not need to get a BAHA or other aid.  The SSD doesn't bother me near as much as I thought it might...I had perfect hearing going into surgery...

Again, best of luck out there!

Cindy
rt side 1.5 cm - Translab on 11/07/08 Dr. Friedman & Dr. Schwartz of House Ear Institute,
feeling great!

"Life consists not in holding good cards, but in playing well those you do hold."  Josh Billings

bdsgurl

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Re: My Story, My questions, Please help!!!!
« Reply #19 on: February 03, 2009, 09:52:11 pm »
I dont have any words of wisdom, in fact i just read what everyone else told you and took it all in becuase ill be there with you having my translab on the 11th by Dr. Brackmann. All i can say, is that ill be thinking of you while im recovering, hoping that we'll both have a great experience and be on our way to the rest of a wonderful life!!!Maybe ill see you there!

NL

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Re: My Story, My questions, Please help!!!!
« Reply #20 on: February 03, 2009, 09:55:30 pm »
It appears most folks are happy with the BAHA. My concern with it was wearing my hear up or in a ponytail. The piece you screw into the bone anchor seems large. If you have one how have you dealt with this sort of thing?
Sonja,

If it works out that we meet with you before your surgery - Lainie is always happy to show off her BAHA.  :)

Nancy
1.6 cm left AN diagnosed Oct. '07
1.9 cm on 2nd MRI, May '08
Retrosigmoid surgery at House Clinic/St. Vincent's on 8/6/08
(no post-op dizziness, nausea, facial or balance issues)
Thankful for a fantastic team of doctors - Dr. Rick Friedman, Dr. Marc Schwartz, & Dr. Michael Stefan

Sonja

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Re: My Story, My questions, Please help!!!!
« Reply #21 on: February 03, 2009, 09:57:45 pm »
Cindy:

Thanks so much for the hotel referral. It's funny, that was one of the hotels I was looking. Thanks for the feedback on the hotel.  The shuttle would be great. Did you rent a car while at HEI?  All these casts are adding up.  It would have been less expensive to go to home town Johns Hopkins or the University of MD, which have fine doctors. I just felt like HEI was the place for me. Gut feeling I guess.

Sorry you loss your hearing. Like you I have gotten use to it and SSD doesn't seem that bad. Although it may be different after surgery since iI may now still be hearing sound.

How long did you stay in LA? Where you able to go out and do anything while you were there?





Symptoms 2005
AN diagnosed January 2007
Watch & Wait until now
Surgery (Translab) scheduled February 18, 2009 HEI (Dr. House, Dr. Schwartz, Dr. Stefan)
No servicable hearing in affected ear

Sonja

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Re: My Story, My questions, Please help!!!!
« Reply #22 on: February 03, 2009, 10:06:31 pm »
Bdsgurl:

I am glad you chimed in. Good luck on the 11th. Will you be staying at Seton Hall? Where are you comig from?

NL:

Thanks for all the support you and the other House Alumni provide. That is great that you guys offer this support. I would love to meet and speak with all of you. My husband and I arrive on Sunday the 15th. Not sure about your schedule but we can meet for breakfast, lunch, dinner or coffee on the 16th. The 17th is pre-op.
Symptoms 2005
AN diagnosed January 2007
Watch & Wait until now
Surgery (Translab) scheduled February 18, 2009 HEI (Dr. House, Dr. Schwartz, Dr. Stefan)
No servicable hearing in affected ear

leapyrtwins

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Re: My Story, My questions, Please help!!!!
« Reply #23 on: February 04, 2009, 07:52:52 am »
It appears most folks are happy with the BAHA. My concern with it was wearing my hear up or in a ponytail. The piece you screw into the bone anchor seems large. If you have one how have you dealt with this sort of thing?  What do you do if you want to perm or color your hair?

I am one of those "happy" folks  ;D

I wear my hair short, so I can't say if wearing a ponytail is an issue or not, but I'd imagine wearing a low ponytail would work quite well.  I'm sure others can comment on that. 

Not sure what you mean by "the piece you screw into the bone anchor", but if you are referring to the hearing aid itself (Divino or Intenso) it's actually amazingly small.  I wear the Divino and it's about the size of the top digit of my thumb.  Also, it doesn't screw into the abutment, it snaps on.

You can perm and color your hair - but you should probably let your stylist know you have a titanium rod in your skull - it's not the kind of thing you'd want him/her to discover by accident  :o  :D

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

cindyj

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Re: My Story, My questions, Please help!!!!
« Reply #24 on: February 04, 2009, 08:41:44 am »
I was in LA for 2 weeks.  My mom and husband both went with me, but Brad left the day I was released from the hospital and my mom stayed through the last week.  We rented a car that we picked up at the airport and Brad returned it when he left.  We arrived out there two days early and were able to take a wonderful guided tour given by our very own Nancy (NL) the day before my pre-op appointments.  It was fabulous and we could not have done it without her, even though we live in Atlanta and are used to "big city" driving!  However, once I was released from the hospital and in the hotel with Mom, I did nothing other than sleep and eat.  I was able to walk around outside some, but certainly no further sightseeing :D

Hopefully you will be able to meet up with the "LA Gang" in the cafeteria at St. Vincents on your pre-op day.  It was such a huge comfort to me to see them prior to surgery.  As I was trying to get through those first few days post-op, I kept thinking of how well they were doing and knew that I would get through it also.  You WILL too!!!

Let me know if you have any other questions,

Cindy
rt side 1.5 cm - Translab on 11/07/08 Dr. Friedman & Dr. Schwartz of House Ear Institute,
feeling great!

"Life consists not in holding good cards, but in playing well those you do hold."  Josh Billings

JerseyGirl2

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Re: My Story, My questions, Please help!!!!
« Reply #25 on: February 04, 2009, 11:51:16 am »
Sonja,

You might want to check with your surgical consultant about arranging an appointment with one of the House audiologists for a BAHA demo while you're there., if you're interested.

I like my BAHA Intenso a lot, and it's become just a part of my daily routine -- I think of it as a "third contact lens." Several people on this forum have the TransEar device and are happy with that. Others have adjusted quite well to their SSD status and don't feel that they need a device. Like so many other AN issues, it's a very individualized decision. And I'm sure you noted from Cindy's last post yet another variation in the recovery process -- she only felt like eating and sleeping after her release from the hospital rather than doing more sightseeing.

Catherine (JerseyGirl 2)
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

NL

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Re: My Story, My questions, Please help!!!!
« Reply #26 on: February 04, 2009, 04:00:49 pm »
Sonja,

I've checked with the our little "LA welcoming committee" and so far three of us are available for brunch or lunch on Monday the 16th. Since we're not meeting on your pre-op day, maybe we can bypass the St. Vincent's cafeteria and find somewhere a little more scenic for lunch.  :)

I'm not sure if you're staying at Seton or a hotel for the first couple of days, but I'll PM you my contact info and we can work out the details.

Looking forward to meeting you,

Nancy
1.6 cm left AN diagnosed Oct. '07
1.9 cm on 2nd MRI, May '08
Retrosigmoid surgery at House Clinic/St. Vincent's on 8/6/08
(no post-op dizziness, nausea, facial or balance issues)
Thankful for a fantastic team of doctors - Dr. Rick Friedman, Dr. Marc Schwartz, & Dr. Michael Stefan

Sonja

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Re: My Story, My questions, Please help!!!!
« Reply #27 on: February 04, 2009, 09:36:06 pm »
Nancy:

I PM'd you. We are staying at Seton Hall. Lunch or brunch on the 16th sounds great.

Jerseygirl:

Do you think it is wise to get the BAHA during the AN surgery. I sure hate to have to do more surgery, even if the BAHA surgery is  out patient.  I imagine I would need to address ths now if I plan to get the BAHA since my insurance company would have to pre-certify and the HEI  would have to know this in advance.

Symptoms 2005
AN diagnosed January 2007
Watch & Wait until now
Surgery (Translab) scheduled February 18, 2009 HEI (Dr. House, Dr. Schwartz, Dr. Stefan)
No servicable hearing in affected ear

JerseyGirl2

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Re: My Story, My questions, Please help!!!!
« Reply #28 on: February 05, 2009, 09:53:04 am »
Hi, Sonja,

Well, I can obviously answer only for myself, but I was very glad to have my BAHA implant done at the same time as my translab procedure. But I have yet to see a comment from anyone on this forum who had the procedure done later and felt that it was that big of a deal; comparison to a dental procedure seems to be the usual reaction, and there's a choice of either local or general anesthesia (most seem to select local, which, in my mind, only reinforces the "not a big deal" theory). In addition, I'm sure there are quite a few places in the D.C. area that would do a great job of BAHA "installation," in case you decided you didn't want to return to House for the procedure. That being said, if you've researched BAHA and have decided that it's the way for you to go, you're probably going to have to really hustle to get things lined up with your insurance company for a procedure that's scheduled for two weeks from now.

I would suggest that you give your surgical consultant a call and see what she/he says. Once again, I can only speak of my own experience. My consultant sent a form letter requesting BAHA coverage to my insurance company. It was denied within a week or so. I then wrote an appeal letter to the insurance company and received a response within a week or so saying that my appeal had been granted and I would be covered for .... a cochlear implant!?!?! I called them immediately and after speaking with quite a few people, some of whom seemed knowledgeable and competent, others who came across as pretty clueless, learned that I was indeed going to be covered for a BAHA, but the coding and procedure had been input incorrectly on my notification letter. I kept up a steady barrage of phone calls over the ensuing weeks before my surgery until I felt satisfied that the matter had been corrected and the proper coding showed up everywhere. I guess my point to all of this is that, depending on your insurance company, the road to pre-approval may take a while. Again, I think your surgical consultant would be your best bet for guidance and advice in all of this.

I certainly hope that everything will go smoothly for you!

Catherine (JerseyGirl 2)
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

Sonja

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Re: My Story, My questions, Please help!!!!
« Reply #29 on: February 05, 2009, 11:46:21 am »
Jerseygirl:

Thanks for the info. I did contact Chris at HEI to see if she could at least try to get pre-authoirization for the BAHA. She mentioned that it can take some insurance companies up to 30 days to respond. I checked with my insurance (BCBS) and they only cover up to $1000.00 for a BAHA. The discounted cash price quoted was $15k. Not sure if $15k is worth it. Not sure how I would get my insurance company to pay since they do state in writing that they coverage for  a BAHA is paid up to $1000.00 per calendar year. That's a darn shame.
Symptoms 2005
AN diagnosed January 2007
Watch & Wait until now
Surgery (Translab) scheduled February 18, 2009 HEI (Dr. House, Dr. Schwartz, Dr. Stefan)
No servicable hearing in affected ear