Author Topic: What To Expect For Postie-Surgery Follow-up  (Read 3812 times)

Kathleen5306

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What To Expect For Postie-Surgery Follow-up
« on: July 21, 2008, 09:09:43 pm »
Hey, everyone-

I have translab scheduled for next Wednesday, July 30 at House with Friedman and Schwartz.  I live in Denver and will fly to LA for the surgery.  When all goes well, what is the "typical" (and I have learned there is NO typical with AN) but what do we do when we become posties?  Is it annual MRI's?  Is it regular check-ups with a doctor and if so, what kind of doctor?  Do I need a special follow up team in Denver since I will not be able to zip back to LA all the time?  What do all of you do as the time moves on?  I like knowing what to expect so that when something happens it is not unexpected to me.  Again, thanks to all.  I wish I could hug all of you that have helped me through this difficult last month.  It has MADE the difference and I will never forget.

Kathleen
Right side AN 19 x 9 x 8 treated CK 2002
Stanford Dr. Chang and Dr. Gibbs
Total hearing loss and tinnitus
Tumor has grown since CK treatment
Measures 20 x 13 x 14 June 2008
Translab Surgery HEI 7/30/2008
Dr. Friedman and Dr. Schwartz

chocolatetruffle

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Re: What To Expect For Postie-Surgery Follow-up
« Reply #1 on: July 21, 2008, 09:37:55 pm »
hello kathleen
after my discharge from st vincents, i was tranferred to seton and first thing i had to do was to schedule an appointment with Dr Brackmann to take out my ear and tummy stitches and with Dr Stefan for final checkup.  The second thing was to fill your prescription - the hospital don't have a pharmacy so you will have to go to a nearby pharmacy to fill it.  then it is nothing but sleep, therapy, sleep and therapy!  On the day of these appointments, Rita will give you a set of vestibular exercises and instructions of what not to do (ie do not carry more than 5 pounds for 1 month, don't hold in your sneeze etc).  they told me that i will require an MRI on my first anniversary and 5 yrs after that - which i will send them the CD/films for review.  If there are AN complications at home, i was supposed to contact them directly as the local doctors will probably not treat my AN complications due to litagation.  This is probably not realistic if it is an medical emergency, so I am not sure how this is being managed.  Anyway, hope this helps and good luck to you!  You are in good hands and PM me if you need any House information and keep us posted!! have a safe trip  :D
chocolatetruffle


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

JerseyGirl2

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Re: What To Expect For Postie-Surgery Follow-up
« Reply #2 on: July 22, 2008, 12:09:30 pm »
Hi, Kathleen,

You have certainly had a journey with your AN, and I think your sense of humor and optimism are to be commended! I'm sure your positive attitude will be a real blessing as you continue your adventure.

I had trans-lab surgery at House in early January of this year -- recently observed my 6-month surgical anniversary and I am feeling just fine and dandy ... really. Drs. J.House, Schwartz, Wilkinson, and Stefan were my doctors and I adored all of them. I imagine you already have lots of information about the Seton Hall Guest Center, and I certainly recommend booking a room there. I think you'll find it comfortable, accommodating, and reassuringly adjacent to both St. Vincent's and the House Clinic! It was good to be around others in the same boat, and my husband and I both enjoyed our almost two-week stay there.

After reading so many of the stories on this forum, I'll say from the very outset that my experience was about as textbook as you can get, so that's the story I'll relate with great hope that your experience will be similar.

You'll probably spend the day prior to surgery meeting with your doctors and having the various standard pre-op tests and procedures done at the hospital. If your surgery is scheduled for early morning, you'll have to arrive in the admitting area around 5:30 a.m. Things will move quickly, professionally, and efficiently from that point on, and before you know it, you'll be on your little gurney ride into the operating room! If you're concerned about the haircut you'll get in pre-op, don't worry about it. I think we trans-labbers get the best deal in that category -- as well as the surgical scar! It will be slightly above your ear and will follow its curve -- not nearly as dramatic as the abdominal scar (and even that's not so bad in the whole scheme of things). The next thing you know, you'll be in the ICU recovery room, waking up to the sound of one of the doctors calling your name. Hopefully you will not experience any dizziness or nausea at this point. I did not, but I honestly do not know how typical this is. I think my AN, even though fairly small (about 1.3 or so cm.), had already pretty much zapped my balance nerve, along with much of my hearing, during its incredibly slow growth over a number of years. You'll stay in the ICU for about 24 hours; the staff members there were excellent and I felt quite comfortable during that period.

Next you'll go to your room on the 6th floor (all of them are singles); it will be considerably quieter and less hectic there than in ICU, so you can really start to rest up and regain your bearings. I had a good view of the "Hollywood" sign from my room, which was an unexpected bonus! You'll meet with your physical therapist and start the first of many walks around the floor. I was in the hospital room from Thursday afternoon through Sunday afternoon and, as in the ICU, found the staff to be very competent and responsive. I was able to start on a regular diet as soon as I got to my room and, as institutional food goes, it wasn't bad. I know that a lot of people have reported having a metallic taste in their mouth following the surgery -- I didn't experience that. I spent my time in the hospital sleeping a good bit, reading, watching television (the football playoffs -- prior to the Super Bowl -- were on TV that weekend, so it was fun to watch those games), and visiting with my husband.

I was released to our room at Seton Hall on Sunday afternoon. As chocolatetruff mentioned in the previous post, you'll need to have your prescriptions filled right away (I was surprised that the hospital didn't have a pharmacy for this purpose). My husband easily found a Walgreen's fairly close to the hospital (I believe it was on Wilshire Blvd.), so that wasn't a problem. I continued my regimen of sleeping/resting, reading, and watching some television during my stay at Seton. My husband brought our meals over from the hospital cafeteria and we would eat in the commons room on the hall. I believe I started walking over to the cafeteria with him on the second day, so that provided me with some needed exercise.

I had reserved tickets for a Tuesday taping of the quiz show, Jeopardy!, a few weeks earlier in hopes that I would feel well enough to attend. We had our doubts that it would work out, but I really wanted to give it a try. Sony Studios, in Culver City, is just about a 20-minute drive from the hospital, so we agreed that if I had second thoughts once we got there, we could quickly return to Seton. It indeed turned out to be an easy drive, with convenient parking and a reasonable walk -- which I took fairly slowly! -- from the parking garage to the studio. We had known that it would be the taping for the two final shows of the Teen Tournament and I hoped that if they had overbooked the seating (due to an influx of contestant family members) that I -- in my semi-bandaged state, with a slow gait and disheveled hair -- would look like someone whose dying wish was to attend a Jeopardy taping. Turned out there was ample seating, so we had a relaxing two-hour sit in the studio watching the taping. I did sleep late and rest up the next day at Seton, but it was a great outing, and I think it gave me a lot of confidence that I would indeed be fine!

We stayed at Seton the rest of the week (took a few more drives and saw some more area sights, but nothing strenuous!), saw all the doctors one more time, then had an uneventful flight from LAX back home to the East Coast. I was asked to give the Clinic a phone call one month after surgery -- which I did -- and I'll send them an MRI one year after my surgical date. I visited my New Jersey otolaryngologist a couple of months after returning home. Extreme fatigue was my only culprit after I got home, but I could discern a slow but steady improvement as time passed. At five months following surgery I felt pretty close to normal, and I think at six months I'm just about there.

I hope I haven't sounded way too cavalier about this entire process. I'm humbled by the excellent spirit and attitude shown by those posters who didn't bounce back very quickly and who may still be having some serious after-effects. There's no doubt that this is an extremely serious procedure, and I feel exceedingly fortunate and grateful that mine was pretty much a textbook case.

One final comment -- I had the BAHA implant at the time of my surgery (it adds about 30 or 45 minutes to the procedure) and am glad I did. Since my brain had adjusted so well to my virtual SSD prior to surgery I've had perhaps a different experience with my BAHA than those whose SSD was more sudden and/or recent. My brain is still in the "yet another adjustment" mode, but I'm quite happy with my progress.

Very best wishes as you undergo your surgery and recovery. You will be in excellent hands.


Catherine

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

Kathleen5306

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Re: What To Expect For Postie-Surgery Follow-up
« Reply #3 on: July 22, 2008, 03:36:27 pm »
Catherine

Thank you, thank you, thank you.  Your wonderful, thorough and complete reply means so much to me.  I am the kind of person who likes to know what to expect.  When I know, I can relax and accept that this is the normal course of action.  I am hoping and praying that I will become another textbook case, just like you.  I feel like I have used up all my bad luck with being one of the few that fail CyberKnife and lose their hearing with CyberKnife.  Go figure.  It sounds like you really only spent the two weeks in LA at Seton Hall and they sprung you back East.  I have in my mind that when we leave Seton Hall, we will have to get a hotel in the LA area for another week or two.  Maybe I will get home in time to see my three kids (ages 14, 13, and 10)off to their first day of school on August 18!

Again, thanks for sharing your positive and successful experience.  As you know, it means the world.

Kathleen
Right side AN 19 x 9 x 8 treated CK 2002
Stanford Dr. Chang and Dr. Gibbs
Total hearing loss and tinnitus
Tumor has grown since CK treatment
Measures 20 x 13 x 14 June 2008
Translab Surgery HEI 7/30/2008
Dr. Friedman and Dr. Schwartz

hruss

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Re: What To Expect For Postie-Surgery Follow-up
« Reply #4 on: July 23, 2008, 02:58:03 pm »
Catherine,

thank you for your detailed answer. I contacted Dr House a month ago and he suggested that i should have a translabyrinth surgery. I am afraid because i hav already have two retrosigmods but they were only partial. Having another surgery 2-3 cm right from my now opened retrosigmoid scares me!  :-[ - my  head will be like a sieve!

I also have to travel for about 12 hours by air in one direction only because i am from Bulgaria, Europe and i am not sure whether i will be able to undergo such a long journey especially a week or so after surgery!

But your story gives me a detailed look how things are!
Thank you!

Hrissy
4.5cm right AN pressing on the brain stem, dn Sept 2007
2 Retrosigm surgeries in Oct 2007 and Jan 2008 by the Bulgarian prof. Kyrkeselian partially removed.
3rd retro surgery in Hannover,Germany by prof Samii, Oct 2008. SSD
Got rid of my bugger, temp facial paresis
hrissysexperiences.blogspot.co

JerseyGirl2

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Re: What To Expect For Postie-Surgery Follow-up
« Reply #5 on: July 23, 2008, 06:34:07 pm »
Hi, Hrissy,

I can certainly understand your apprehension about facing such a lengthy flight. I do know that the House Clinic treats patients from all over the world, so perhaps you should contact the clinic and ask them for some details on that specific issue. They might also be able to provide you with some information on surgeons a little closer to your home, which would give you some additional options. It sounds as though you're determined to make the best decision you can ... and that's definitely the way to approach this situation. Best wishes to you as you continue your research!

Catherine
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