ANA Discussion Forum
Treatment Options => Microsurgical Options => Topic started by: jays on August 10, 2009, 09:27:15 am
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This is only my second post, but I've been reading and gathering so much information from this forum - Thank you everyone!
The University of Minnesota is an excellent facility, but after consulting with the surgeons, I decided to have a Middle Fossa surgery somewhere else. The surgeons there do not have enough experience with this procedure for me to feel comfortable going there, even though I live close by.
I then consulted with the Mayo Clinic and also with the House Clinic. I finally decided (after battling it out with my insurance ;D that I will be having my Middle Fossa surgery at the House Ear Clinic on September 9th by Dr. Fayad and Dr. Schwartz. Is there anyone else who will be there that same time?
I have heard excellent things about House clinic, and personally have found them to be amazing with calling me back to answer questions, and making sure I had everything I needed to make my decision.
Now that I have the surgery plan in place, I am facing the 'now what' questions. I know everyone's recovery is different, but of those of you who have had the MF surgery, what should I expect in terms of recovery, rehab, scarring? (does anyone have any pictures of what it looks like post op?)
Is 10 days from surgery typically enough time to fly back home? Do I need to arrange for a wheelchair at the airport?
I am also planning on staying at Seton Guest Center. I am thinking about checking in a couple days before my surgery, so my partner and family will have a place to stay, and then staying there after I get out of the hospital. Any advice on what to expect at Seton?
???
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I had my surgery June 30, 2009 at House.
My tumor was about the same size as yours.
I can only tell you my experience so far being six weeks post-op.
I had MF and the tumor was completely removed. No facial nerve damage, hearing preserved.
Pretty big balance issues (see Wonky Head on the board) but physical therapy is helping a lot.
I stayed at Seton Hall as well.
Clean place, small refrigerator in the room, shared kitchen in the lounge area with people sharing food sometimes.
Computers available with internet although it is dial up so its pretty slow.
My daughter brought her laptop and was able to get a connection from the room.
There is a tunnel between Seton and the hospital which is especially nice after dark. The location is not the greatest for walking around at night.
The cafeteria has food cooked and vended but after a while you may want something else.
The price was right and you get to meet other people who are going through the same things as you.
Hang out in the lounge where the kitchen is and you are bound to meet others having AN surgery.
You need to be there for meetings and tests the day before the surgery.
I arrived an extra day before surgery so we could hang out at the beach and just chill out.
I stayed for ten days after surgery and was ready to go by then.
They actually released me for travel on Wednesday evening but my flight was already set for Friday morning so i stayed the extra day.
I didn't want to travel around LA much after surgery but that was me. I went out once but the cab ride was awful.
Walk as much as you can after surgery and look around in all directions. Make sure someone is with you while you do it so you don't fall.
I arranged to have a wheelchair at the airport. It made it so much easier to deal with the crowds.
You need to request that service from the airline in advance. There is paperwork and you must get a travel release from one of your doctors. Dr. Stefan gave me mine.
Make sure you have a hard copy of it in case the airline says "huh - what wheelchair?" :)
Oops! Almost forgot about the scar.
It's a big ol' curve scar but they keep it all within the hairline.
They will shave that side of your head but it grows back pretty quickly.
No one can see mine anymore.
PM me if you would like to see pictures of mine.
Hope this helps.
Patrick
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I know this is rather late but the University of Iowa has a super neurotolgist who does ANs on almost a weekly basis.,Dr Bruce Gantz. There have been several on here who has had their surgery there. I have NF2 and am very glad we have him in Iowa. There are many who come from out of state to him.
I wish you well in your AN journey! Cheryl R
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Patrick did a great job of covering the things you will experience at House. I didn't have surgery there or a retro but was going to chime in and say that the wheelchair at the airport is a GREAT thing. I had the T3 reconstructive surgery last year and i was SOOOOOO glad I had the wheelchair. We flew Southwest and i didn't even THINK about it until we were checking in to come home. I asked about it then and was immediately accommodate - of course, this was not AN surgery and I truly looked like I had been in an auto accident so that might have made a difference!! :o)
K ;D
PS - CHAPSTICK - you have to have Chapstick - it will be your best friend!
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Hi, jays - and a slighlty belated welcome.
I'm pleased to learn that you've made that always-difficult decision as to type of treatment you'll have (Middle Fossa surgery) at what institution (HEI) and the doctors you choose to perform the surgery (Dr. Fayad & Dr. Schwartz). Now, that's done and you can prepare for the surgery and your recuperation. I didn't have Middle Fossa surgery nor go to the House Ear Institute for the surgery I did have, so I'll step aside and let those who can relate to your question provide the answers you seek. Patrick has already given you a fair amount of information and I'm sure more will follow as many of our members have had surgery at House. I took the liberty of posting your surgery date and relevant info on our AN Treatment Calendar here: http://my.calendars.net/an_treatments/d09/09/2009?authenticate=&display=M&style=B (http://my.calendars.net/an_treatments/d09/09/2009?authenticate=&display=M&style=B). Of course, I join many others in wishing you a trouble-free surgery and rapid recovery. :)
Jim
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Hi and Welcome! I'm a House patient - translab surgery was in Nov. w/ Dr. Friedman. Patrick has given you great thoughts/advice for heading out to LA. I had a great experience - can not say enough good things about all of the docs, nurses, etc. As Patrick said, you are bound to meet AN patients out there. The 6th floor that you'll be on is just full of them...so is Seton House. My husband stayed at Seton while I was in the hospital. Once I was out, he flew home and I went to a hotel with my mother for the duration of my stay.
There are some folks on the forum who live in LA and often they are able to meet w/ patients at the hospital on pre-op day. We refer to them as the LA Gang - Nancy (NL), David (LAdavid) and Lainie...if you have the opportunity to meet with them, I would highly recommend it! It is a great comfort to see and talk with them prior to surgery. Nancy had a middle fossa exactly one year ago at House.
There are various pics of scars out here on the forum somewhere. You can do a search to try to find some - I'll try to look for some, or someone may come along with a link to a pic.
Feel free to PM me with any other specific questions you may have. I, and many others here, will help in any way we can!
Cindy
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Get the wheelchair!! The sitting down part is nice -- but being wheeled "directly" through every line and going right onto the plane is priceless. It takes the "tiring" out of travel! You would not want to have to stand and wait in line after line!
You'll have several days of misery and wondering why you put yourself through this, then rapid improvements!
The MF scar is like a giant reverse question mark. Well, don't let me scare you by saying giant. But giant compared to tiny type like this: ?
It's not gory for long. (At first it kind of is, when you have naked scalp and dark thread stitches -- but then those come out and the hair comes back fast.) No one can *believe* I just had this surgery two months ago! (Granted, I have long hair that covers it via combover!)
10 days is the usual routine as long as everything goes according to plan. My surgery was on a Thursday, and I went home the following Sunday.
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Hi Jays,
I'm probably just going to miss you...planning on leaving House on the 5th....good posting I needed to know this stuff too!
Best wishes, Melinda
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Jays - best wishes, please let us know how things are when you feel up to it. I'm also considering House so I look forward to any info you (or Melinda) can provide.
Patrick - thanks for all the details and suggestions.
- Dennis
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Hi, Jays, I will miss you to as I will just follow you and arrive on the 21st of September for Sept. 23 surgery. They told me I could fly back home 10 days after surgery. I came to the same conclusions as you did and selected House for middle fosa and quantity of this type of surgery performed. Dr. Brackmann will be doing mine. Can't wait to hear how it turns out. Good luck.
Cheryl
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I'm probably just going to miss you...planning on leaving House on the 5th....good posting I needed to know this stuff too!
Best wishes, Melinda
I will be thinking about you Melinda! :)
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Hi, Jays, I will miss you to as I will just follow you and arrive on the 21st of September for Sept. 23 surgery. They told me I could fly back home 10 days after surgery. I came to the same conclusions as you did and selected House for middle fosa and quantity of this type of surgery performed. Dr. Brackmann will be doing mine. Can't wait to hear how it turns out. Good luck.
Cheryl
Cheryl -
I should be back home by then. I am planning on flying home on Sept. 19th. I will let you know how everything went.
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Hi Jays,
I had translab at House in January 2008, stayed at Seton Hall, and flew back home to New Jersey ten days after my surgery. As you know, everyone's recovery is different, but I wouldn't just assume that you'll need a wheelchair when you get to the airport. Many patients (myself included) felt well enough to do a fair amount of sightseeing and other activiities post-surgery -- attending the taping of the Jeopardy Teen Tournament at SONY Studios in Culver City six days after my surgery is my favorite memory of my AN experience. The most important thing for you to do during your early recovery is to listen to your body -- REST when it tells you to take it easy.
Best wishes as your surgery date approaches, and I hope your surgery and recovery go smoothly. You'll be in great hands.
Catherine (JerseyGirl 2)
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Hi, Jays. Welcome to the Forum.
Good luck with your surgery!
Jan
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thanks Jays, I'll be thinking about you too :)
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Jays,
Staying at Seton Guest House is very convenient, but the accomodations are simple. Think college dormitory. They change the bed linens once a week, and you can get your own clean towels from the cart in the hall. There is a TV room with a VCR and DVD player, but selection of tapes/DVDs are limited. I don't think the TV in the rooms had more than basic channels (no CNN, ESPN, etc.).
If you arrive after hours (or early in the morning), you need to make arrangements with the office to pick up the keys at the Security Guard desk in the hospital lobby.
Post-op, I took walks around the hospital neighborhood with my father, but didn't feel like doing anything else. My father spent the day reading the newspaper, and a big stack of magazines that he brought from home. Some people rent a car and do things. Parking is in the hospital parking garage. My father is 73 and didn't want to drive in LA. My cousin did take us out for lunch a couple of times, but I was lazy and didn't do much.
There are not too many places to eat within walking distance other than a Burger King, a hole-in-the-wall Korean/burger joint, a Thai restaurant, and Latino restaurant. Down by MacArthur Park is a big hispanic market area with some fast food places, but the walk back up the hilll, knocked me out (I'm a real couch potato).
In the lobby of the Seton House, there's a 3-ring binder with listing of restaurants within close driving distance. In your pre-op packet that House sends to you, they provide a list of hotels that provide a House Clinic discount. Some people stay a hotel for a little more luxury.
Your pre-op tests and appointments will last a full day including going to the lab at St Vincent for blood, urine and chest X-ray. You'll start at the House Clinic at around 7:30 a.m. and finish around 5 p.m. When I went the lab for the tests, the clerk also did a lot of the paper work for the next day's surgery, so the next morning went very fast (checked in at around 6:00 am and with 45 minutes I was on the gurney headed to pre-op).
Don't worry too much about your hair. The House docs only shave about a 1-1/2 inch strip along the incision line.
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Hi Jays,
I had my surgery at House in August 2008 but live in LA, so I can't really help you with info on travel or Seton. But it seems like you've received lots of good info and advice from those who did make the trip to LA.
I just wanted to let you know that there are three of us House alums who live in LA and are here for you if you need us. :) I sent you a PM, too.
Congrats on making your decision and best of luck,
Nancy L