Newbie going to House Ear Clinic

[pamk]

I was diagnosed with an AN several weeks ago.  I spent the first week in terror, crying then just going to bed and covering my head up.  Then I got busy with the research, and with a recommendation from my ENT I am headed to the House Ear Clinic with surgery later this month.  Now I am scared to death about other things, the what ifs....I am also a nursing director in a large medical center which "yes" makes it worse. I take care of people, I don't get taken care of!  I am looking for anyone who has been to House Clinic with Surgery at St Vincent. any advise what do I expect post op.
thanks,
pam

[sgerrard]

Hi Pam,

I hope it is okay with you, I moved your post to a new topic. Lots of people have been to House; they will be along shortly to fill you in. Don't be scared; there is nothing like that going on. You will be back at work as a nursing director after a recovery period. Life goes on, and turns out to be just fine.

Steve

[Joef]

Hi!  I'm also a House "Alum"  They will take care of you! are you staying at Seton Hall on the St.V grounds ??

do you know any details? how big the tumor is? Normally the bigger the tumor, the longer the recovery .. of course everyone is a little different (I'm sure you already know!)... but there is Life after surgery! .... I'm longing for warm weather this weekend so I can take the Kayak out !

[JerseyGirl2]

Hi, Pam,

I live in New Jersey and had my acoustic neuroma surgery (translab procedure) at House in January 2008. I can't say enough wonderful things about House and St. Vincent's Medical Center and I would go back there in a heartbeat (this is in no way intended to disparage other treatment locales or surgeons -- if you've been reading this forum I'm sure you've learned that there are many, many wonderful acoustic neuroma surgeons throughout the country).

Are you local or will you be flying out to L.A.? If you're travelling you've probably already received information on Seton Hall -- it's a good place to stay both pre- and post-surgery, primarily because it's adjacent to the hospital and across the street from House. My husband and I arrived in L.A. several days prior to my surgery and kept busy driving around and playing tourist -- it was a wonderful distraction from the upcoming surgery (I should note that my only pre-surgery symptom was hearing loss, so I was feeling absolutely fine). If you ususally fly coach, the return flight home (particularly if it's a lengthy trip) is a great time to trade in frequent-flyer miles for an upgrade to first class -- you'll probably feel pretty tired, and the extra space will help.

As Joef said in the previous post, there is a lot of variation in the post-surgical recovery process. Reading this forum will give you an idea of the range -- anywhere from feeling fine but tired to a variety of challenges (which, I hope you'll also notice, are faced with a lot of courage and pro-activism by the members of this forum). If you mention some details (AN size, type of procedure to be done, etc.) that will help forum members with their responses.

Please post again and know that everyone on the forum will be cheering you on. And please don't be scared -- you'll get through this just fine.

Catherine (JerseyGirl 2)

[Pooter]

Pam,

While I'm not a House alumnus, I can tell you that you are in good hands there.  I've heard nothing but positive things about House.  As for as expectations post-op, they vary wildly however generally the first 3 days don't count, but you'll need (on average) 4-6 weeks of recovery time before you start doing a lot of "normal" stuff (like going back to work).  Some recover quicker than others, but you'll know by listening to your body.  I saw Steve post a good timeline recently about what generally happens when.  Something about after two weeks (if memory serves) feeling good and trying to do something normal and you get slammed back to the mat by your body.  Generally speaking, rest, rest, and more rest.

My story of surgery in May is below (in my signature).  You're welcome to read about my ups and downs both before surgery and after.  It will tell you what to expect, at least in my situation, after surgery.  Admittedly, I didn't want to do much for 4-6 weeks after surgery except sleep and watch TV, but part of that was the allergic reaction I had to some drugs I was on.

Welcome to the forum.  It's perfectly normal to be scared.  You've come to the right place for information.

Regards,
Brian

[bdsgurl]

I just had my translab at House just over 3 weeks ago, while i wont lie and say its been an easy 3 weeks, im coming along well. I even have days i am already starting to feel "normal" again!! I had a huge tumor (4.7cm+) and i had very minimal facial weakness, which in 3 weeks is almost completely gone. I felt like i was in the best hands possible with the surgeons at House. St. Vincents was great also, you will do great. I will keep you in my prayers!!

[NL]

Hi Pam,

Hello from another House alumnus! There are quite a few of us on the forum. I had a retrosigmoid surgery 7 months ago with Dr. Rick Friedman and Dr. Mark Schwartz for a 1.9 cm tumor, and am doing great.

There was a thread a while ago with House stories on it, and though many of the posts are from 2005, the last few are from 2008. Here's a link to the thread:

http://anausa.org/forum/index.php?topic=18.0

I never got around to posting my own experience there, but I did post some of my experience on the following thread 5 days after my surgery:

http://anausa.org/forum/index.php?topic=7138.0

I'm sure you'll hear from others, too. And if you do end up coming to LA, there's also a group of us who all had surgery at House and live in the LA area.  As often as we can, we try to meet with House newbies before their surgery. I was fortunate to get a chance to talk to a couple of "posties" (post-op patients) the day before my surgery, and it was a great help.

Best of luck with your decision, and feel free to PM me if you like.

Nancy L

[chocolatetruffle]

hello pam
i am a house alumni and you are in great hands with a great team at house and st vincents.  my recovery period was about 6-8 weeks but that really depends on size of tumor and other factors. Aside from a bladder infection, inability to raise my eyebrows for 2 weeks and a numb tongue for 4 months, i don't have any facial weakness or any other complications.  since i already lost 80% of my balance which my other ear had compensated, i did not experience any major balance issues - only wonky head and the feeling of being separated from my surroundings (which is really hard to explain).  But with balance exercises, time and rest, these were overcome in due time.

there are many posts on house within this forum, with tons of experiences and "we have been there and done that" advices.  but please feel free to PM me for any other questions. We are all here for you, take a breather and hang in there! 

[arkansasfarmgirl]

I'm another one with nothing but good things to say about House and St Vincents.  I had a translab done in November 2008 on a tumor that was 4.5 cm at diagnosis and "bigger" at surgery (they couldn't tell me the size because they coudn't see the whole thing at once).  The only complication I had is that they had to cut and graft my facial nerve, so I had some pretty severe paralysis to overcome.  Which is healing up nicely, if slower than I would like.  Other than that, I feel great and am almost back to my normal activities (not quite up to barrel racing yet, but I AM back riding horses!).

We flew in 2 days before surgery and flew home 8 days after surgery. 

Vonda

[kathylittlejohncobb]

I'm another House alumnus~~had my retrosigmoid almost 3 years ago.  I, too, can not say enough good things about House, all of their staff, and the staff of St. Vincent Hospital and the lovely guest house next door, Seton Hall.  Dr. Rick Friedman and Dr. Marc Schwartz were my physicians, also, and I can tell you that they went above and beyond in their care and their caring.  From the physical therapist to the nurses, everyone was so nice and helpful.

You can go online and even view the rooms at St. Vincent's, by the way.

The best to you; let us all know how you progress,
Kathy 

[pamk]

Hello to all of you who have been so supportive.  I received the care (just as you all said) that was the best in terms of skill of the hands, and the heart.  I experienced an episode of CSF leakage but other than that all is good.  the leakage healed up with a couple of stiches.  I was there for a total of 2 weeks due to the leakage.  I am 4+ weeks out and working on the balance and dizziness issues.  Each day is better and I started driving last week, my husbands says I drive slower but other than that it is good.  does anyone have any thoughts on the balance issues, exercises that helped ( I am really trying to step up my walking this week) or how long the improvement continues? 
by the way, someone asked and my tumor was 2.1cm, the resection was a near totall, with between 85%-90% removal.  I will have a baseline MRI in June.

appreciate any ideas.
Pam

[JB914]

i had my surgery at House in 2000.  Top notch MD's and they train alot of docs from all over the US and World on AN surgeries! 
very professional, organized clinic and you will be in good hands!

[Jim Scott]

Hi, Pam - and congratulations on a successful AN surgery!

In my experience, simply doing what you want to do, be it walking or just exercises is one of the best routes to regaining full or near-full balance function.  We're all unique so I wouldn't speculate on a time frame for you (or anyone else) but it is usually a matter of months, not weeks.  I'm almost 3 years out of surgery and feel that I've finally regained most of my balance ability (90%, anyway) - and I had an excellent recovery with no real complications.  If you had asked me a few months post-op, I would have said that my balance was fine.  I was driving and doing a lot of the things I did prior to my symptoms kicking in, my diagnosis and subsequent surgery and radiation.  However, I've noticed that over time, I can do more than I used to.  I don't need a handrail to go up or down stairs, I can do quite well in dark places, etc.  I have accepted the reality that, at 66, my balance won't be quite what it once was, but then, I'm not doing anything in my daily life that requires perfect balance, anyway.  I trust your balance will steadily improve over time.  Patience is the key. 

Jim

[EJTampa]

Glad to see you back here as a postie Pam!
 
Sounds like things went well, outside of the CSF leak.  My surgery was on March 5th and my balance has improved a lot since then.  I still get very light-headed when turning my head left to right or up and down, but I can deal with that .  I started driving around the 5th week maybe, but not much until week 6.  I did try before that, but hated the feeling.  I'm glad to see you doing well and will pray for your continued healing.
 
Ernie

[kathylittlejohncobb]

Hi Pam,
So glad you are well on the way to a good recovery! 
Regarding exercise, etc., I agree with what Jim said.  Just doing movements of whatever kind will help.  You will see that as time goes on, you will be more adept at balance and the various movements, as well.  Of course, do whatever exercises your p.t. gave you to do, also.
Sending you a virtual hug,
Kathy