ANA Discussion Forum
Treatment Options => Microsurgical Options => Topic started by: TR4guy on August 29, 2010, 07:34:45 pm
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Hi all,
First of all, let me say thanks for helping me through that little crisis of confidence I was having a few weeks ago.
I updated my signature to show the change, but never made an official announcement.
I am now going to go to the House Ear Clinic to have surgery on Sept. 14th.
They are going to do the Translab approach.
As soon as I made this decision, I was in a much better mental state.
The only problem I had was having to tell the Georgetown docs that I was going to House.
I liked those guys. I sorta feel bad that they lost the chance to do my surgery twice.
House was my number once choice though, and they fit me in quickly.
(I told them if they couldn't do it soon, I had other options)
I'd be interested in reading the details of anyone elses experience at house. Particularly if they were coming from a long way off as I am.
Thanks to all,
Scott
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Congradulations, Scott!
One of the toughest decisions is choosing WHERE to have surgery. I had been followed by a neurotologist in my home town(Philadelphia area) for 4 years but ultimately chose House as well. My surgery was on July 14th, 2010. I was very pleased with the experience. My results were excellent; the doctors were as personable and clinically excellent in person as they were over the phone. I hate to fly, and don't love having brain surgery or leaving my kids for 2 weeks but in spite of all of that I do not regret my choice one bit. I had the most confidence in their skills and knowledge of all of the docs I had consulted with and I knew that they would do the very best possible job in removing my AN.
There is alot involved in planning for a trip like this. My husband and I chose to stay at Seton Hall for the 2 days prior, and 2 days after discharge. My husband of course stayed there while I was hospitalized. The accomodations are ok; but the convenience and proximity can't be beat. (THey even have a tunnel that you can take fronm the hospital back to Seton if you or your family wants to visit you late at night.) But 2 days after discharge we left for a nicer part of town for the remainder of our stay. There are lots of possible hotels that you can choose - and some will transport you back and forth from House. But we found a lovely Hilton Garden in in El Segundo that was perfect for us.
We stayed for about 2 weeks and 2 days. I wanted to be sure that I felt fine before flying back. Was really worried about that but I really felt fine - like a normal flight - on our way home. Arranged for wheelchair assistance at LAX which was great. They have someone who personally pushes you from place to place til at the gate. Was really glad that I did that as walking through all of those crowds feeling unsteady would not have been great.
THere is so much I could tell you since it is all so fresh in my mind. Please feel free to send a personal message with specific questions. I am also happy to chat with you - Will send you a PM with my phone number. Either way, I wish you the best. I know you will be well taken care of!
Suz
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Scott -
I'm not a House alumnae, so I can't give you any input there.
Just wanted to say good luck on the 14th. You're in good hands and I'm confident things will go well for you.
Jan
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Hi, Scott,
I flew from the east coast (NJ) to have surgery at House in January 2008 and it was a decision I would make again in a heartbeat. A couple of things I did that worked out well: my husband and I rented a car (picked up at LAX upon arrival) with a GPS. We did a lot of driving, touring, etc. both before and after my surgery (I should mention that I felt fine prior to my surgery -- my only symptom was hearing loss -- and I recovered quickly enough from my translab procedure that we were able to do a reasonable amount of touring afterwards as well). We stayed at Seton Hall the entire two weeks (except for the last night, which we spent at one of the LAX hotels to more easily catch our early morning flight back east) -- it's not luxurious, but adequate and the proximity to House and St. Vincent's is invaluable. We upgraded to first-class for the flight back home -- the extra space, quieter surroundings, etc. made it worthwhile, not to mention the non-existent line at security for first-class check-in. I didn't require a wheelchair and we were at the terminal gate a mere 30 minutes after leaving our hotel that morning.
Best wishes to you! You'll be in wonderful hands at House.
Catherine (JerseyGirl 2)
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Hi, Scott! I too was a House translab patient and traveled to LA from Atlanta. My husband & mother both went with me. I second what Catherine said about getting a GPS in your rental car! We didn't and we regretted it the moment we got on the interestate. My husband stayed at Seton the whole time I was in the hospital, then he flew back home to be w/ our boys. Mom stayed the recovery week with me - we actually ended up moving to a hotel that was recommended by St. Vincent's. I just felt like I needed to get away from the hospital environment for that week of recovery. The hotel provided transportation to and from St. Vincent's (my husband returned the rental car when he flew back). Many, if not most, do, however, stay at Seton throughout their stay in LA.
You will be in great hands out there - practically the entire floor you will be on in St. Vincent's is full of AN patients. It was very comforting to my mom and husband to talk w/ other patients and their families as I was recovering.
Best of luck to you! Let us know if you have other questions or concerns,
Cindy
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Congrats to you, I believe for me the worst part was deciding what treatment to have. Enjoy these next couple weeks, try to do some of your favorite activities and keep busy. Hopefully the weight stays off your shoulders and you continue to feel at ease.
Take care,
Liz
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Scott,
So glad you came to a decision, and a good one at that!
Translab at HOUSE sounds much better.
I had translab, but not at House. Actually my surgeon trained there, and he did an excellent job with the surgery (except for the facial nerve thing which was unavoidable, and I am doing well)
Will be here before you know it. What a relief for you :)
Keep us posted ok?
Maureen
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Congrats, Scott, for making a decision. There are so many people here on the forum that had surgeries at the House that you will find all the info you need. I am wishing a speedy and uneventful recovery and, of course, marvelous results!
Eve
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Scott ~
More congratulations on reaching a decision for treatment and facility. I believe you've made a good choice.
I've entered your surgery date/info on the AN Treatment Calendar http://my.calendars.net/an_treatments/d14/09/2010?authenticate=&display=M&style=B (http://my.calendars.net/an_treatments/d14/09/2010?authenticate=&display=M&style=B)
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Scott............good luck with your upcoming surgery. I will keep you in my thoughts and prayers. Mine is scheduled the 15th, but I will be at the University of Pennsylvania. Don' know about you, but I do want to get this over with so I can move on!!! I am having head pressure and am very tired all the time.......but am fighting it!~ Still working.............Take care of yourself and again....good luck! Kathleen Anna
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Kathleen Anna,
I'm going in for the slice and dice on the 15th too.
I think being tired is from emotional exaltion that something like this has on a human. Or it could be the demon inside your head sucking the life out of you. :'(
I guess when I go in that morning around 7:15 AM at Harris Methodist Hospital in Fort Worth. I'll be scared but maybe I'll remember your going in that same day and won't FEEL alone.
TR4guy,
I guess you will be in ICU the day Kathleen and myself go in. I guess you get to go in first. Your taking the point. As they say in military patrol speak. Good man.
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I think being tired is from emotional exaltion that something like this has on a human. Or it could be the demon inside your head sucking the life out of you. :'(
BOTH!
All three of you will be in our prayers for successful surgery. You will have your own little mini support group when you return to post.
Isn't this a great forum????
Maureen
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Another good luck is going your way from another House Alumn...I have a pretty detailed thing I wrote up about my experience at house...if you are interested I can send it to you...take care and keep us updated! :)
Jay
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Scott!
Good luck with your upcoming surgery at House! I flew there in June (I am 13 wks post op) from Milwaukee. I would make the same decision over and over again. You are in good hands. You will be in the company of numerous other AN patients while you are in the hospital. The AN patients and their families are one big support network for you while you are there. I was amazed to be wheeled back to surgery the same time as 2 other patients...it made me feel less alone!
The folks at Seton were great and it was very convenient to stay there post surgery (due to my circumstance of having to deliver my baby early from complications from AN symptoms, I moved to LA for 6 weeks)
Since (like Suz) I was just there, send me a PM if you want to talk offline/via phone and I will answer any questions, give you my 2 cents and maybe most importantly try to ease your mind about surgery in LA.
I wish you the best and know that you are in good hands with hospital staff that takes care of AN patients every day!
Best,
Kris
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I'm new here just diagnosed on 9/3/10 and my AN is 1.1 x 0.7 cm. I just saw my ENT who gave me all the options I have read about. I am a bit overwhelmed as I'm sure all of you had been when you received your diagnosis. My next step is a referral to a Neurosurgeon. Of course with an HMO who knows how long this will be. My ENT did not seemed too concerned and even suggested the "watch and wait" ??? approach, but then also said being my age...I'm 40 and in good health, that now would be a good time even though these are usually slow growing tumors. Please any information and advice you can send my way would be greatly appreciated. i am in California, so I was thinking of making a an appointment at the House Ear Clinic being that it is only about 1 hour away.
Thanks!
Renee
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Hi, Renee - welcome to the Forum ;D
I'm not opposed to surgery (had it myself), but did your ENT mention radiation as an option for you?
The size of your AN should make it a possibility (location will be another factor) and your age doesn't preclude it. I was 45 1/2 when I was diagnosed (1.5 cm at the time) and was given the option of surgery or radiation. You definitely want to know all your options before you make a treatment decision.
You should contact the ANA and ask them for their informational brochures - you'll find them easy to understand and very helpful.
If you do decide to look into radiation, Dr. Chang @ Stanford is an excellent doctor to consult with.
Best,
Jan
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any information and advice you can send my way would be greatly appreciated. i am in California, so I was thinking of making a an appointment at the House Ear Clinic being that it is only about 1 hour away.
My advice: as one who was more than happy to travel from New Jersey to Los Angeles for surgery at House, I would suggest that you take advantage of your proximity to that institution and make an appointment at House! You can (and should) do additional research, especially if radiosurgery appeals to you ... but I think most of us agree that House is a pretty good place to start your AN journey.
Best wishes,
Catherine (JerseyGirl 2)
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Welcome to the forum and sorry to hear you have an AN, but it is small so unless you have severe symptoms you could most definitely watch and wait. Do go to House for an opinion, they are the best.
All the information on this site and others can be great, but it can also make your head spin, so try to take a break from it. As you said the AN is (in most cases) slow growing so you have time to make treatment decisions. Even if you wanted to take 6 months and then get an MRI to see if there is any growth that would be a great way to really weigh what option is best for you.
Good luck to you,
Liz
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Good for you! Please keep us updated about everything. I am trying to schedule my consult now, so I'm looking forwar to your experience there.
Good Luck!
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I had my surgery, translab about a year ago with the House doctors, Schwartz and Friedman. My tumor 3.7 cm on the left side. I think you are in great hands. I did also travel, from Wyoming, grew up in LA so did the recovery with my parents. Also took advantage of the wheelchair trips through the airports, definitely worth it. No facial problems, of course no hearing on the left side, but my right ear has no loss, so I'm getting along pretty well. I have found three positives about the hearing loss, I am not bothered by my husband snoring anymore..can just roll over :), driving on the highway with the window down at 75 doesn't put any pressure on the ear anymore, and I can't hear mosquitoes buzzing on that side :). Back to work full-time, work with the public. Best of everything to you with your surgery
Susie
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Hello,
After much research I too am having surgery at the House on Sept 21st and I am travelling from Toronto to have it. I am very happy with my decision and wanted to thank everyone here for the support - this is a great forum and the AN journey would be much more difficult without it!
Thank you.
linda
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So it is surgery day. (after midnight) I've stopped all eating and drinking per the Drs. orders.
I guess I should really get some sleep.
We will see how that goes. I think I'm pretty tired but it is sometimes hard to turn off your mind.
I know I got alway from this forum a little recently as I was taking care of business and updating friends and family through my blog.
But this place has been very valuable to me and I appreciate all the advice and comments I got from you all.
I know there wasn't time to follow up with everyone who contacted me and said I could call them personally. Please don't take it as my dissing you. I just got kinda busy here at the end.
Despite my not being too active on the forum in the last week or so, I got a wonderful surprise. A forum member who is an alum of the House Clinc and lives here in LA came up to meet me and talk to my two friends who made the journey with me. She met me at the clinic and talked to me between appointments and talked to my friends while they were waiting. She really went above and beyond the call if you ask me. Nancy, I can't thank you enough.
Guess it is time to get some sleep now.
I'll catch you all again in a few days.
Thanks again for the support.
Scott
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Scott -
you probably won't read this until a few days post op, but I wanted to say good luck with your surgery.
I'm glad you got to meet Nancy. She's part of a wonderful group in LA that includes LADavid and Lainie.
Best wishes for a swift, uneventful surgery and recovery.
See you as a postie!
Jan
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Scott ~
Although you won't see this post until well after your operation, I join with Jan and many others who are thinking of, praying for and wishing you a successful, uncomplicated surgery today.
Jim
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Scott,
Thinking of you today. You are in excellent hands.
See you in postie land :)
Maureen
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me too, hope to hear from you soon....welcome postie!
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I echo everyone's comments...thinking of you today and hoping that surgery went well! Get plenty of rest (if you can while you are on those steroids!). Keep us all posted on your recovery! Being on the other side of surgery is such a relief in itself!
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I've just finished reading your blog, and am happy to hear the surgery went well. Rest now, do as the doctor tells you. Interesting nick names for your friends, but it sounds like you're in really good hands.
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I know you are in great hands!!! Get plenty of rest and listen to your body!! I also got to meet the LA crew, they are wonderful aren't they? You guys ROCK!! :)
Jay
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I've just finished reading your blog, and am happy to hear the surgery went well.
Blog? What blog?
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I've just finished reading your blog, and am happy to hear the surgery went well.
Blog? What blog?
If you click on his name it will take you to TR4guy's profile you will see a link to TR4guy's blog.
In case you can't find it.
http://jtnmswp.wordpress.com/
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Thanks for the link to his blog - very entertaining...and glad to read that surgery went well and the facial nerve appears to be ok...not wanting to move, sounds oh so familiar - things will get better soon!
cindy
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Thanks for the link.
Very cool blog 8) Sounds like Scott is doing well and has some very interesting friends helping him with that. I'm glad he has such a good support system; that will be a plus in his recovery.
Jan
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Excellent news for Scott!
Take it easy- not doing anything except walking (or trying to) and keeping those headaches at bay.
Congrats!
Maureen
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Hey folks,
Its coming up on 5am pacific time. In one hour I will be going in to get me CSF leak fixed. They say that my ear will sort of be an "outie" much like a belly button can be an innie or an outtie. Oh well.
Despite that, I'm doing remarkably well. It would appear I had favorable anatomy. Which I take to mean a big noggin.
My other blog is for the rest of the world...one in which information about ANs and me flows in one direction only. You guys here an there posts are what allowed me to put on the brave face for the rest of the world and answer questions with confidence.
Can't thenk you all enough for helping me get here today.
I will catch you all on the flip side.
Scott
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Sorry to hear about the CSF leak, but it sounds like it will be patched up very soon.
Glad you're doing remarkably well. Keep up the good work!
Jan
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Scott, Sorry to hear of a leak. I've been thru that too and that surgery was easier than the AN anyway. No night in ICU and back to my room post op. I now have muscle over the ear drum hole. The surgery was shorter and did take care of it! I hope it goes well for you! Cheryl R
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Hang in there! Thinking of you...
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Scott, I've been following your blog, sounds like you are doing really well, despite the leak. I hope things continue to go as well.
Tod
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To be writing to us yourself already, you must be doing pretty darn good! Sorry about the CSF leak - but glad it was discovered before you left the hospital.
Continued well wishes,
Cindy
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Your mileage may vary of course...but this csf leak patch is VASTLY. More painful than the original surgery.
Maxed out on pain meds...nobody move..please.
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Wow, didn't realize a CSF leak patch was painful.
Hope the pain meds brought much needed relief.
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Bout 24 hours ago got out of the second surgery.....feels like it has been a week. Not fun. Hope it gets better.
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I'm sorry to hear you are in pain. Use the meds and hopefully it will pass soon.
Tod
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Things turned around pretty quickly around lunchtime. Much less grumpy and much less drug induced haze. Still lots of pain..but now it just feels like a juiced up earache. Not the wretched headaches of last night.
Now to the important part. How in the world am I going to watch the Auburn Clemson game tonight without ESPN here at house clinic?
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Scott ~
I'm very pleased to learn that you're feeling much better - and that you have your priorities straight! :)
Jim
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Hey Scott,
I'm so sorry you had the setback, but seems like you're back on the road to recovery. Glad you're feeling good enough to think about the game!
Looks like your connection is good in your room - they're streaming the game right now. Just click on the ESPN3.com to the right of the game listing on the schedule:
http://espn.go.com/college-football/schedule (http://espn.go.com/college-football/schedule)
Good luck - on the connection and the game. :)
And thanks for keeping us updated!
Nancy
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Your CSF leak is making me more scared about my impending surgery. At least your on the other side now.
And aren't you suppost to be in the post-op sub forums now? Just giving you a hard time. Get better soon.
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Your CSF leak is making me more scared about my impending surgery.
Don't sweat it, Funny.
CSF leaks are just something that some get and some don't. There doesn't seem to be any rhyme or reason for it, although someone told me that there's a theory if you have a fat graft (docs take fat from your abdomen and fill in the space where your tumor used to be) your chances of a leak diminish - but that might not be true.
Scott -
so are you a Clemson fan or a Auburn fan?
Jan
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Hi Scott,
I am sorry it's been a hard road and hope you're starting to feel better. I will be at HEI tomorrow having translab surgery on Tuesday and hope to be able to say hi at some point.
linda