Going to CA for my surgery on 7/6/11

[michellemonaghan]

I DID IT!!!!!  The fight with Kaiser is over and they are sending me to the House Clinic in Los Angeles, CA to have my Middle Fossa surgery done.  I've gotten our airline tickets and condo booked for our trip.  My pre-op is on the 5th of July and surgery is on the 6th.  I'm just wondering if anyone can give me advice of things to bring for this trip.  I will be traveling with my mom, my husband, my 16 & 18 year old sons.  We will be staying at the Seton while I'm in the hospital and then we will go spend the rest of our time at our condos.  Any tips would be greatly appreciated.

Michelle 

[Desilu]

Hi Michelle,

I too had surgery at House and I think you will be very happy with your decision. Everything for a short hospital stay can be left at Seton Hall. While you are in ICU, you will not need anything. When they put you in your own room, then someone from your family can walk to Seton Hall and get it for you. There is an underground tunnel from the Hospital to Seton, so you don't even have to go outside if you don't want to. There is a TV in your room and another room down the hall to watch VHS movies (and they had tons of them). That was 5 years ago, they probably have DVD movies by now. There is a community room with a kitchen and you can bring your own food and cook it on the stove there. It's a complete kitchen. All they ask is that you clean up your mess and mark your items with your name on it that you put in the Fridge so no one else will eat it. There are puzzles and computers to be in contact with family and friends. One good idea is to have one member of your family be in charge of emailing your family and friends (make sure you take their emails address' with you or take a laptop. This way the phone will not be ringing off the hook if you are tired and everyone will get the same story. I was blessed to be feeling so good after surgery that after I got out of the hospital, I went on a sightseeing bus tour with my sister and son. I was a little unsteady but I held on to their arms and did just fine. There is so much to see out in LA you may want to pick up some tourist brochures. And last but not least keep a positive attitude! You have done your part by making the decision, the rest is up to your doctors and God. I wish you the best, please keep us posted. If I can be of further help, just send me a personal email. Ann

[JAndrews]

You have made a great choice for your surgeons! I am doing great:) I also stayed at Seton for a total of 2 weeks. Its a quiet place. I was really, really tired. I remember eating a lot of chocolate and being a little edgy because of the steroids. By the time I left LA, my head didn't hurt at all. You will be shocked at how much medication you will be on post-op ( I think about 10 days total). Have one of your family members make a chart...it was huge help! I definitely was not up for sightseeing, but I walked every day to the cafeteria at the hospital to eat. Towards the end of my stay I was actually able to walk to a Burger king that was close by. Please be patient as the recovery process does take some time. The tiredness/fatigue was overwhelming. Every few weeks I would say "ok its a little better". My head didn't feel normal again until about 6 months post- op. Take it easy and take care of yourself! Let your family do everything:)

[CHD63]

Michelle .....

So glad you have jumped the last insurance hurdle and will soon be on your way to LA.

My translab and BAHA abutment surgeries were done on May 11, 2011 at House, with Friedman and Schwartz.

My husband and I stayed in Seton the entire 16 days we were there.  Our room was right across from the breakfast room.  We had a small apartment sized refrigerator in our room where we kept most things.  However, there is a large refrigerator in the breakfast room kitchen for bigger/taller things.  There is no stove there, but it does have two toaster ovens and two microwaves.  We ate our breakfasts in Seton and a couple of evening meals there, but most of the time we walked to the hospital cafeteria.

There are two very old computers in the Breakfast Room where we did most of our emailing.  We took our laptop but could never seem to hook in to a secure connection so did not use it except to watch some DVDs we brought from home.

The really special part of staying in Seton Hall was meeting other AN patients and their families.  We had an instant special bond.

I felt so good post-op I was discharged on day 5 and walking all over by day 6.  We even took an overnight side trip to Newport Coast, CA on days 8-9 with some of the friends we met there.  Met with the LA ANA group on day 11 and we walked all over downtown LA.  Sure I was tired, but a good kind of tired.

As for things to take ..... this may seem strange, but I had a really comfortable neck pillow (soft and squishy) that I used not only in the plane to and from, but in bed after I was discharged.  Of course, the ever wanted lip balm was essential for me.  One thing that caught us off-guard was that there are no pharmacies open in the hospital, clinic, or nearby on Sunday ...... so if you are going to be discharged on a Sunday (maybe even Saturday), check to see if a family member can pick up your Rxes on Friday before you are discharged.

PM me if you have any specific questions ...... would be glad to help in any way I can.

Best thoughts and prayers.

Clarice

[Syl]

Michelle:

Congratulations on your insurance victory. I hope your surgery goes as well, too.

May I suggest keeping a primary caretaker at your side after surgery & sending everyone else to Disneyland.

Syl

[Lesliegc]

Michelle
Congratulations! It always makes me happy to hear someone actually talked some sense into their insurance company. I Just wanted to let you know that I will be out there around the same time--have not fixed a date yet, but likely July 11, so maybe we will cross paths. Middle fossa, small right side. Trying to wrangle some missing pieces from my neuro at home to get them to Dr Friedman and I am really just wanting to get this over with. Hope to meet you out there. In the meantime, i wish you all the best with your surgery, and if you have inspired thoughts once you are there about what to bring, will you let me know? I'm bringing my mom too, but leaving my husband with my sons, 14 and 16, so that there is minimal disruption.
best,
Leslie

[cindyj]

Congrats on winning your insurance battle!  When I went to LA two years ago, took my husband and mom and left two boys (17 & 19) at home.  Then husband flew back home after first week and Mom stayed w/ me til I left LA.  Husband stayed in Seton while there, but Mom & I went to a hotel once I was out of hospital.  I needed to be away from all the hospital stuff   You don't need much of anything for your stay out there - comfy clothes and lip balm is all I used   I like Syl's suggestion of sending everyone off to Disney! 

You will be in great hands - best to you!

Cindy

[james e]

We are all different, but I did not want my wife and  my 25 year old daughter to sit around in the room following my surgery.  I was tired, but I felt really good. I did not want to be entertained and I did not want to feel like I needed to entertain them. They went shopping, I slept and watched TV, and two or three times daily, they would bring in hot cup of coffee. Just resting was very important to me, and of course they love to shop, so it worked out great. It was always a treat when they visited me. If they just sat there and looked at me for hours on end, they would be bored, and I would have been uncomfortable.

They should plan some trips daily, and you will need to rest. Good luck with your surgery.

James

[Silver Sonnet]

Good job on winning the battle of the insurance!  I lost my first round, but then I found NIH, so I don't need insurance

What a coincidence that we have exactly the same schedule on opposite sides of the country!  I'll be admitted to NIH (in Bethesda, MD) on the 5th and have my ret-sig surgery on the 6th. 

As for what to pack, be sure to take something from home that will make you feel secure--a favorite throw or a small pillow, etc.  If you'll be having any kind of therapy while you are there, take work-out clothes or something along those lines.

Let us know how it goes!

[smiley]

Congratulations on your insurance victory.  I had my first AN removed from HEI four years ago, they are fantastic.  I currently have Kaiser and I am very happy with their service regarding monitoring the other AN, but I was hoping to get an out of network approval when it came time to remove it.  I am in no hurry because they just gave me another year on the watch and wait status , but I would like to know the best approach to get an out of network approval through Kaiser if you have any.

Regarding your surgery, I agree with james e.  During my recovery I enjoyed vistitors but encouraged my wife and parents to do things around town.  I live close enough to the hospital which allowed siblings, friends and children to visit, but at the same time I was able to get rest, which was all that I really craved.

As for essentials.  comforable shorts and new t-shirts was all that I ordered after the first day.  I just wanted to be comfortable.  The tunnel between Seton and the hospital is great when family members were walking back to Seton at night.

Good luck, I think you are going to be very happy with the hospital staff and HEI doctors.

[Rivergirl]

Best of luck with your surgery, sounds like you have everything planned out real well.  Best wishes for speedy recovery.

[JAndrews]

Take chap stick! I slept most of the time while I was at Seton. I was really tired and only stayed awake maybe a few hours at a time. I was on alot of medication for about 2 weeks. My husband stayed the entire time, my sister 4 days. I really needed them...my children were 4 months and 2 years and stayed back here in Florida with my mom. I remember I had a hard time focusing my eyes. I walked as much as I could. Even if it was 3am I would go out in front of Seton with my husband and walk. The more I walked the better my balance got. I was a little dizzy, but nothing major. Headache was bad when I woke up from surgery, but they gave me dilaudid around the clock and that worked fine. I took my last pain med before Brackmann removed my stitches..never needed it again. The only food that had any flavor was chocolate. Good for me thats my favorite thing to eat:) I had never been on steroids before, it made me anxious and jittery. Dr. Stefan gave me ativan to help with side effects from the steroids and it worked great. Good luck to you...you are in the most perfect hands! You will be fine...BUT....be patient with yourself. I didn't really feel like myself again for about 6 months. The fatigue was overwhelming, but with each week it subsided a little.

[michellemonaghan]

Update on my surgery.  Everything went amazing well!  Total tumor removal, facial nerve wasn't involved (thank God) and 100% hearing preservation!  I was pretty sick the first couple days after surgery but then started doing really good.  I was very tired because I would only get about 1 hour sleep at a time at night so I slept a lot during the day as well.  It was wonderful having my family there with me!  I was checked out of the hospital on day 4 because I was doing so well.  We checked out of the Seton Sunday and checked into our Condos in Anaheim to spend a week of recover there.  We spend a lot of time just relaxing by the pool but have taken several trips out to Downtown Disney and shopping.  I feel wonderful!  I have to lay down and relax my eyes some but if I get a 15 minute rest I good to go again!  We have one more fun day in the sun and then we will be headding back home. 

Thank you for all who responded to this post...all the suggestions were taken and I truly appreciate it.

Michelle

[jaylogs]

Wow Michelle! If you can get up and go out shopping, then you are doing STELLAR!  Glad to hear everything went well for you! Keep us updated!!
Jay

[Lesliegc]

You go girl! I think you just made my day...my surgery is Jul 25 at HEI and I was just thinking yesterday, "what I need is a really positive, post-op message to inspire me." I am so very happy for you that it went well, that your hearing is intact, that they got the whole thing out. Keep feeling great! 
Leslie