Author Topic: Hi Ho Hi Ho off to House I go  (Read 7204 times)

Ernie

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Hi Ho Hi Ho off to House I go
« on: July 09, 2009, 05:05:56 pm »
My big day is July 30, with Dr.’s Wilkinson and Schwartz. Thanks to everyone who responded to my posts over the past couple of months.  Now that I have made the decision I was hoping to get some tips on surgery.

For those who have had the House experience, do you have any recommendations or tips on the logistical side of the adventure?  I only live about 10 hours north of LA and flying kills my ears and sinuses so I am going to drive.  I have reservations at Seton so lodging is taken care of. 

They want me to stay there for 10 days or so after I get released from St. Vincent.  Once I get my sea legs back somewhat are there places nearby to visit, eat, etc. to pass the time?  I am not sure how spry I will be but I definitely don’t want to just sit around all the time.

For those who have had surgery, do you have any tips for going thru the procedure?  Ideas on dealing with the dizziness, nausea, etc.  Dos and don’ts of any kind?  I have had three general anesthesia operations in my life thus far so I have some idea of what to expect.

I am basically just going to get in the best shape I can, stay positive, pray A LOT, and go with the flow as much as possible.  I have not touched alcohol in years, but I am kind of thinking that the first day or two post op will be like the worst hang over in the history of mankind.  It seems like one of the keys will be not to freak out too much about what I wake up with initially. 

Any ideas are appreciated.

Ernie               

msmaggie

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Re: Hi Ho Hi Ho off to House I go
« Reply #1 on: July 09, 2009, 05:55:38 pm »
Hi Ernie,

I didn't have surgery at HEI, but I did send my MRI there and Dr. Wilkinson was the one who called me w/the consult.  He was wonderful, and called me several more times to see how I was doing.  In fact, he was the one who realized that what I had was not an AN but a cpa meningioma.  I will be forever grateful for his careful examination of my MRI.  Please tell him I said hello.  You are in good hands!  I hope all goes well with your surgery.  The first few days are a bit like a hangover...but w/out any of the fun of getting there!  Just roll with it and realize that the F3D don't count.  :D

Priscilla
Diagnosed  left AN 8/07/08, 1.9 CM
Surgery 12/10/08 at Methodist Hospital w/Vrabec and Trask for what turned out to be a cpa meningioma.

JerseyGirl2

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Re: Hi Ho Hi Ho off to House I go
« Reply #2 on: July 09, 2009, 07:26:12 pm »
Hi, Ernie,

You'll be in excellent hands at House -- I live in New Jersey and will be eternally grateful that I made the journey to L.A.  for my translab procedure about a year and a half ago (this is not intended to disparage any of the excellent AN surgeons throughout the country; as you've no doubt noticed from this forum, there are lots of wonderful doctors around). Dr. Wilkinson was one of my doctors (along with Dr. John House and Dr. Schwartz), and I felt quite confident and comfortable with him.

Sounds as though you've done your homework and will be well prepared for your "adventure." Staying at Seton is an excellent decision -- it's pretty basic (you won't care that you're not at the Beverly Hills Hilton, believe me!), but its proximity to St. Vincent's and House Clinic more than make up for any shortcomings. I was tired after my surgery but certainly felt well enough to get out and about a good bit. This isn't necessarily typical (I was fortunate not to have experienced any nausea, dizziness, or any other ill effects after my surgery) and you may find that you're content to just hang around Seton during your recovery. Don't push yourself if your body is telling you to take it easy!

My husband and I had picked up a rental car at the airport on our arrival and did lots of touring both before and after my hospitalization. I know that I did less walking and more riding after surgery than before, but one of my favorite memories of the entire trip was attending the taping of the Jeopardy Teen Tournament finals in Culver City (Sony Studios) six days after my surgery.

You can search on "House" on the forum and find quite a few postings of former patients that will hopefully give you a good range of things to expect (bearing in mind that there is no "typical" experience). I imagine other House alumni will respond to your message as well, and you can see all the posts of a given person by clicking on his/her name and going to their profile.

Best wishes to you as your surgery date approaches. I hope that everything will go wonderfully with your surgery and recovery!

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

leapyrtwins

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Re: Hi Ho Hi Ho off to House I go
« Reply #3 on: July 09, 2009, 07:33:20 pm »
Good luck, Ernie.

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

chocolatetruffle

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Re: Hi Ho Hi Ho off to House I go
« Reply #4 on: July 09, 2009, 08:31:52 pm »
hello ernie
you will be in great hands at HEI!!  question, you are not driving by yourself i hope?  I live in the bay area and driving back was not fun at all - i was in the passenger seat but i could feel every bump, every turn and all i can see out the window was a blurr as my eyes was not able to focus on moving objects.  it is like sitting on a boat with stormy waves so i just stared straight ahead or close my eyes.

keep up with with your exercise (get that heart pumping!), staying positive and praying. good luck and pm me if you have any questions.
chocolatetruffle


2.8 cm left AN
Translab @ House/St Vincent's 11/27/07
Drs. Brackmann, Schwartz, Wilkinson, Stefan

sharonov

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Re: Hi Ho Hi Ho off to House I go
« Reply #5 on: July 10, 2009, 07:40:24 am »
Isn't there a train that goes at least from L.A. to Oakland?  And maybe farther?  I had looked into that once since I have family out there, but discarded the idea because it takes too long--however, it would be a very smooth ride and you'd undoubtedly sleep most of the way.  You may want to look into it for at least a portion of the journey.
Sharon

Lilan

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Re: Hi Ho Hi Ho off to House I go
« Reply #6 on: July 10, 2009, 09:41:15 am »
Ernie, great luck. If you have time, you might look up my threads (search LILAN) and those of Alicia (search ALICIA), as we were both just at House, her in May and me in June, and we both recounted a fair amount of our experiences at House and Seton! I'm sure others will weigh in with helpful info too as JG2 has done!

Not sure how much dizziness is under your control those first few days, if you get it. Just take the meds and wait for time to pass!

As for Seton: I had no desire to do much but hang around. The couple times I did, it was quick and easy to call a cab from the hospital main lobby (there are designated 'cab phones' right there). Personally, I would not have gotten my money's worth out of a rental car, but I know others feel differently about that -- it's just hard to know as it really depends. To some degree near the end, it may depend on how stir crazy your companion or caretaker is! Since I had two who "handed off duty," neither got too terribly stir crazy -- but others at Seton had cars were using them.

So you might look ahead of time for some downtown destinations that interest you -- maybe have a couple restaurants in mind you may want to try, or whatnot -- so if you get the urge, you can just call a cab and go there. There are grocery stores nearby too, a quick cab ride away if you need that. There is not much in walking distance but a Burger King (I recommend the chicken fries BTW -- very small when it's hard to open your jaw wide)  ;D  We did well at the hospital cafeteria, too -- can buy cereal there for next morning, decent salad bar, soups, grill, entrees, etc. I was also into Grape Snapple there -- not something I'd normally drink! I liked being there too because if I didn't look my best (actually that's not an IF) or was walking really slow or whatever, I didn't feel self-conscious about it there!

I think I'm rambling. But it's all fresh in my mind so feel free to pepper me with specific questions!



Facial nerve hemangioma. Probable dx 7/2008 confirmed 4/2009. Combo middle fossa and translab to remove the blood vessel malformation and snip ruined hearing and balance nerves by Drs. House and Brackmann @ House 6/2009. Doing great!

Jim Scott

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Re: Hi Ho Hi Ho off to House I go
« Reply #7 on: July 10, 2009, 09:58:38 am »
Ernie ~

I don't know if my experience will be helpful but I'll offer it, anyway. 

I didn't have my AN surgery at HEI and didn't have any really negative experiences immediately post-op.  I mostly just slept.  Once the effects of the anesthesia wore off and I got my 'sea legs' (as you put it) I was anxious to sit up in a chair (next to the bed) and the next day, walk around the halls of the ICU with my wife by my side ('just in case').  I was eating pretty normally, considering the quality of the hospital 'food'.  By Day 5, I was ready to go home, and my doctor agreed.  The 30 mile ride home (my wife drove) was uneventful.  We stopped at a diner and I enjoyed a stack of pancakes and about 4 cups of coffee.  It was delightful.

Once home, I spent a lot of time in my recliner and took frequent naps. Although I had a good recovery I didn't really feel up to much the first week at home.  Within another week, I was getting restless and started going to a local park and taking 2-mile walks with my wife, something I didn't do before the surgery.  I felt the walking was helpful for regaining my sense of balance and generally a healthy thing to do (it was late June). Once it turned cold, I stopped (I live in the northeast).  My doctor gave me permission to drive two weeks after my hospital discharge.  I took back roads for a day then hit the highway and never looked back, as they say.  Turning my head to 'eye-check' when changing lanes was a bit tricky at first, but I managed to overcome the discomfort and it eventually dissipated.  I avoided heavy lifting for months, post-op.  Still do, to a point - nothing over 30 pounds or so.   

Frankly, I didn't do a thing to prepare for my AN surgery.  I was 63 and all the pre-op tests showed that I was in good shape so I saw no need to do anything special.  I certainly prayed a lot and then left it in God's hands.  It all worked out pretty well.  I trust you'll have a similar experience.  Try to keep a positive but realistic outlook.  Many people will be thinking of and praying for you.  :)

Jim

Addendum: I entered your surgery info on the AN Treatment Calendar  http://my.calendars.net/an_treatments/d30/07/2009?authenticate=&display=M&style=B
« Last Edit: July 15, 2009, 12:57:29 pm by Jim Scott »
4.5 cm AN diagnosed 5/06.  Retrosigmoid surgery 6/06.  Follow-up FSR completed 10/06.  Tumor shrinkage & necrosis noted on last MRI.  Life is good. 

Life is not the way it's supposed to be. It's the way it is.  The way we cope with it is what makes the difference.

LADavid

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Re: Hi Ho Hi Ho off to House I go
« Reply #8 on: July 12, 2009, 12:57:41 am »
Ernie -- Please know that NL (Nancy), Lainie (with numbers after her name that I forget) and I (all Angelians who have had surgery at House) are here for you.
David
Right ear tinnitus w/80% hearing loss 1985.
Left ear 40% hearing loss 8/07.
1.5 CM Translab Rt ear.
Sort of quiet around here.
http://my.calendars.net/AN_Treatments

4cm in Pacific Northwest

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Re: Hi Ho Hi Ho off to House I go
« Reply #9 on: July 12, 2009, 10:47:01 am »
Take bottled water. The tap water in LA is "the worst" I have ever tasted. The cafeteria food at St. Vincent is ... well ... take some snacks.

There are not many stores close by so take things like chap stick, q- tips, fresh fruit, with you. You might even want to pick up some breathe right nasal strips just in case you have some temporary issues with conjestion etc post op
http://www.breatheright.com/Products_products.aspx?rotation=26599686&banner=201967671&placement=%7Bplacement%7D
 - as you might be challenged to find these in that location. Also many patients wake up with temporary extra sensitive hearing in their good ear, from post-op swelling,- so maybe pack some comfortable earplugs just in case.


Know that even though this is an inner city locale- you will get excellent care there. You are there for excellent medical care- not tourism. Keep this in mind when you see how basic Seton House is. There is a computer with internet access at the Seton house- so be sure to have someone post (if you are not up to it) and let us know how you are doing.

You will be in good hands there.

Sending you HUGS! I will keep you in my thoughts and prayers these next few weeks.

DHM
4cm Left, 08/22/07 R/S 11+ hr surgery Stanford U, Dr. Robert Jackler, Dr. Griffith Harsh, Canadian fellow Assist. Dr. Sumit Agrawal. SSD, 3/6 on HB facial scale, stick-on-eyeweight worked, 95% eye function@ 6 months. In neuromuscular facial retraining. Balance regained! Recent MRI -tumor receded!

Sonja

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Re: Hi Ho Hi Ho off to House I go
« Reply #10 on: July 12, 2009, 09:24:34 pm »
Ernie:

Congrats on making a decision. I know that was one of the most stressful things for me. I must echo what Jersygirl2 said. You are in very good hands at House. I had translab surgery February 18 of this year. My team was Dr’s House, Schwartz and Stefan. I can’t say enough about the House doctors. I was impressed and they were all humble.

I will be five months post surgery this week and I feel great.  I traveled from Maryland and would do it again.  I have no regrets and am very happy with my decision. I realize that everyone’s experience is very individual but it is good to know you are going to some of the best doctors.

If you intend to meet with David, Nancy and Lonie you will not be sorry. They are some of the most giving, sharing and warm group of folks. They offer tremendous support.

Some of the things I took with me was stool softener (can not strain when going to the bathroom), some refresh tears (you may have dry eye), Soft food (jello, pudding soup), large and/or button down shirts, and confidence that you will get through this ordeal.

I wish you the best.

Sonja

P.S.  Any questions feel free to ask.

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

4cm in Pacific Northwest

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Re: Hi Ho Hi Ho off to House I go
« Reply #11 on: July 15, 2009, 11:36:15 am »
Ernie,

I just want you to know I have been thinking about you today. I remember the anxieties I had before the actual surgery and all the travel plans, insurance hoops, etc leading up to the big day in California.

Be sure to get outside and enjoy life this summer and try to put the TUMA aside for a while ... take lots of photos of you with friends and family doing FUN stuff. (We went roller skating as a family and to an amusement park ... as I knew it would be awhile before I could do this again... 2 summers later... I can!) You have made your decision, which was tough I know, now get out there and enjoy life with the people who are important to you. Try to take time to put your worries aside.

I had those photos at my bedside (of the family playing before surgery time) ... Looking at the photos helped me to push my physiotherapy along so I could work towards go back to this (which I did)

Know that you are in good hands going to HOUSE. There is life when you get to the other side of surgery and a whole wealth of people on this forum, who have been there and and done that, that can support you through this. You will discover that you DO have personal strength to get through this.

Sending you cyber hugs and well wishes.

DHM :)
4cm Left, 08/22/07 R/S 11+ hr surgery Stanford U, Dr. Robert Jackler, Dr. Griffith Harsh, Canadian fellow Assist. Dr. Sumit Agrawal. SSD, 3/6 on HB facial scale, stick-on-eyeweight worked, 95% eye function@ 6 months. In neuromuscular facial retraining. Balance regained! Recent MRI -tumor receded!

jb11258

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Re: Hi Ho Hi Ho off to House I go
« Reply #12 on: July 15, 2009, 05:23:21 pm »
 :)Hi, I flew from N.Y. 4 yrs ago and had my surgery with brackman. Which surgery are you having? I think I had trans-lab which left me deaf in my left ear. The day before surgery you have a FULL day of tests. Then go out for nice relaxing dinner. Day of surgery, you are admitted, they shave part of your head then in OR they put you out. Honestly when I woke up it was the worst experience of my life. Worse than the worst hangover. !st 24 hrs. were horrible. They say the better your balance before surgery, the worse you will be after. My balance was perfect before surg. For some people its not as bad. Dont be arraid, it gets better. The 1st day or 2 i couldnt get out of bed. Then they start walking you and you are hugging the wall but the severe dizzyness is gone. By day 4 I was out of hosp. Even though I had no balance I did lots. I couldnt walk by myself, and it took along time to get ready to go out, but I did. My husband would just hold me up and guide me. Anyway we went to outdoor markets and shops. ASk around, they are wellknown. We went to dinner on beach in Malibu, we went to santa Monica pier, and drove around Beverly Hills to see Mansions.I believe I got better quicker because I was in L.A. and forced to do things. As wierd as it sounds, we had some fun. When I went for my final checkup, they asked me to fill out new patient forms-I didnt look as if I just had surgery 5 days prior. Its not a picnic, but I think recovering in L.A. helps. Anyway they said I would need wheelchair in airport going home, And I walked LAX the plane , kennedy and the tram by myself.Bring loose fitting , comfortable clothes, maybe music cause they didnt want me to read or watch TV. They cut a little incision under my belly to use fat to put in brain incision so comfortable bottoms if you are having that. Shoes that slip on, cause you are not allowed to bend over for 4 wks. Take vitamins and keep in shape. Dont get sick or catch a cold. You are not allowed to cough or sneeze also. They want no pressure on your brainfor 4 wks after. By the way, the day before there is a test to see how your balance is or something like that. Ask them about it and dont do it. I wanted to know how mine was. I cant remember what the test is called but if you dont have to do it DONT. It makes you dizzy till you want to throw up. No need for it. Sorry for going on and on but trying to remember everything to tell you. Driving in the car in L.A. I was not motion sick and I had no problem driving home. As wierd as this sounds, life here in N.Y. is soooo stressful, and I kind of felt after the surgery I was on vacation. By the way, after surgery they give you tylenol, and I didnt even take it cause no bad pain and I didnt want to take anything that can make me nauses( spelt that wrong) There really is no pain. worst part is dizzyness.Its all uphill after that. ! more thing- I dont know if you will be losing your hearing, but if so I would ask about baha at time of surgery. I wish they were doing that when I had mine. Another thing, when you get home you cant pick up anything more than 5 or 10 lbs. I personnely couldnt drive for 5 mos. but I had the worst balance issues. I know I went on and on, but I really dont talk to anybody about the whole procedure. Please let me know if you have any other questions.. By the way, you will be in St. Vincents and there is a floor just for our surgerys and the staff only works with our operations so they are great. Not like other hospitals

Ernie

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Re: Hi Ho Hi Ho off to House I go
« Reply #13 on: July 15, 2009, 05:33:46 pm »
Thanks for all the ideas and well wishes.

It is funny how I am excited and terrified all at the same time about the surgery.  Part of me says lets get on with it and the other says you are insane for doing this.  All in all I have pretty much made peace with the decision and I know I am going to be in good hands at House.  I don’t obsess about it any longer and I find I have actually started looking at life beyond the surgery more.    I go about my daily life and it only comes up every so often like an annoying fly.  I have stopped all the researching and looking at odds for this and that because it ultimately just leads to more anxiety.  But, calming the doubts and fears completely is easier said than done

One thing I noticed about the decision making process is how closely it mirrors the grieving process.  Shock, denial, anger, bargaining, depression, ambivilence; they are all uninvited guests to the party.  I found that once the grieving process started to come closer to the acceptance stage I was able to more clearly make a decision and be at peace with it.  Like grieving, though, there is still a little remnant that you have to chew on from time to time.

There is a small lake in the Sierra Nevada Mountains called Bucks Lake.  It is a family favorite.  I am going to spend the next four days up there with my wife and three little ones.  It is a much needed escape.  I am going to leave the AN worries at home for a few days.

See you all when I get back

Ernie

jb11258

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Re: Hi Ho Hi Ho off to House I go
« Reply #14 on: July 15, 2009, 05:38:39 pm »
Hi, me again. I am not good at computer so dont no how to correct mistakes. One i noticed I meant to say no problem flying home. They say your ear is full and wont feel anything which is true. Another thing, if you are driving, someone must be with you to drive home

 


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