Author Topic: New to the AN Club  (Read 4358 times)

Cheryn

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  • Cheryn from Southern California
New to the AN Club
« on: July 07, 2005, 03:27:46 pm »
Hi Everyone,
Boy, I am so happy to have found you guys!   I had my first appointment at the House Clinic on June 24th with Dr. House. I have a 5 x 9 mm AN which I understand is considered small. I am waiting for my surgery authorization to come back and will then schedule a date. Dr. Schwartz will be my co-surgeon. I read his bio. He's a graduate from Harvard Medical School which sounds good to me. Dr. House of course is the best.

My ENT doctor told me what my diagnoisis was but I was unclear as to the gravity of the situation. I came back to my office and googled it and almost fainted when I saw "brain tumor". I feel almost paralyzed with fear which is not my style at all. I'm usually able to tackle any problem, but this one is scarry to say the least.  So....Russ, I'm a facts person and from what I've read you have tons of information. What can I expect before, during and after surgery? Will I be walking along and just tip over? I make light of this but I have to tell you, my knees were knocking when I walked out of there and could barely drive. I  work best with a lot of factual information even if it scares me half to death. I know that Dr. House gave me a lot of information but I couldn't tell you one word that he said I was so frightened. I have a list of questions for my next appointment but wanted the feed back from people who have lived through it.

So, all things considered....I'd rather be in St. Thomas sipping on tropical drinks. :'(
Cheryn from So California
5x9mm AN
Middle-fossa surgery at House Ear Institute, 8/19/05
Dr. House & Dr. Schwartz

David Wrubel

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Re: New to the AN Club
« Reply #1 on: July 08, 2005, 08:19:41 am »
Yeah....St. Thomas sounds very good, doesn't it?

First of all, you're at the best place you could be, with excellent doctors and staff. The surgeons at the House Clinic developed most of the techniques used for this surgery.  More AN surgeries take place at House than any place else in the US. They  have seen and dealt with every possible complication that might arise. They utilize their own wing, operating rooms, and intensive carre unit at St. Vincent's hospital, which is right across the street from House.

I'd write more, but I have a meeting. Look around this forum...there are a number of posts that describe what your experience might be like. Here is part of a post under Microsugical Options section, where you'll find a bunch of useful info.

My experience as a patient was outstanding. I believe that my absolute faith in Friedman and Hitselberger helped enormously. Not only did I never once think I might actually die, but I had no doubt that I would be able to resume my life with very few residual effects of the surgery, aside from losing the hearing on my right side. That, I figured, was a small price to pay.

Because the tumor was so large (turned out to be over 5 cm.) and the surgery so long (6 hours, which for House is a long procedure), I was in ICU for three days, then in a room for another five days. I was released, but developed a very small CSF leak that only required that the incision be repacked and reclosed, which Hitselberger thought from the outset might have to be done. He did it the next morning, and a few days later I was released.

Here's something you'll like to hear: There was very little pain, at least relative to what I expected. The nurses were fabulous, follow up care was amazing, and single rooms the norm. The food was decent, but I recommend the first floor cafeteria or some local restaurants for take out. Ask the doctors.

When I left Calfornia, Rick Friedman told me that mine was the largest AN they had removed to that point where the outcome resulted in such a high degree of facial mobility, lack of headaches, almost no balance issues, and no eye problems. Hitselberger wanted to take me to a LA Dodgers game toward the end of my stay, but they were out of town!

The flight home was uneventful, and though I was much more tired than usual for the next three months or so, things were remarkably normal from the beginning. I started driving again two weeks after my return, and a month later attended my first business meeting in New York. That nobody there suspected anything unusual about me was just what the patient ordered!

It's now a little over five years since the surgery, and I can still tell you what I had for breakfast the day after I was released. As if it were yesterday, I remember my first post-hospital bath, a seemingly endles walk down Venice  beach, certain things we bought in LA, and my wheelchair ride through LAX.

What are my deficits? There is some residual numbness in part of the right side of my face, sort of like permanent mild novocaine. I can't kayak (takes an amazing amount of coordination and balance), my basketball career is over (then again, at 50 yrs. old it was anyway), and I do shy away from concerts and really loud clubs, since I only have one ear left.

Which brings me to the biggest problem I have....I miss hearing in stereo. Following conversations in noisy restaurants is difficult, and strategic seating in such places is a must. Again, a small price to pay for what might have been a far less satisfactory outcome.

Please, feel free to contact me with any questions or concerns. I have been in touch with lots of people over the past five years, including others on this forum. When I get an AN message on my machine, it's the first one I respond to. Same with emails. Talk to you soon.



Good luck.

« Last Edit: July 08, 2005, 08:28:04 am by David Wrubel »
Regards....DW

5+ cm right side AN removed at House Clinic, Drs. Friedman & Hitselberger 4/13/2000, age 47.  Facial nerve intact. No eye problems, headaches, or balance issues. Drove 6 weeks later. 1st biz trip 8 weeks later. Huge tumor....great outcome.

dpericoni

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Re: New to the AN Club
« Reply #2 on: July 08, 2005, 12:08:22 pm »
Cheryn,

I, too, was recently diagosed with a 5mm by 8mm AN. I am going to Dr. Brackman at House for the surgery. All the doctors at House are great. You and I will be in great hands.

Darlene

Cheryn

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  • Cheryn from Southern California
Thanks David...
« Reply #3 on: July 08, 2005, 12:30:15 pm »
I have found some terrific information here. Ranging from bone cement to when I can wash my hair. I have a list of questions for the nuerosurgeon that came up as I read thru the posts. I'm sure I won't  be able to remember my own name by the time I get back with the surgeons. This is a journey you have all taken before me. I am so gratefull for all the information. How did people do this before the internet?
Cheryn from So California
5x9mm AN
Middle-fossa surgery at House Ear Institute, 8/19/05
Dr. House & Dr. Schwartz

Cheryn

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  • Cheryn from Southern California
Re: Darlene...
« Reply #4 on: July 08, 2005, 12:33:41 pm »
Do you have a date yet? I just located my missing authorization so I should be ready next week to set up a date. I know they are scheduling 6 weeks out, depending on when the doctors are available with vacations, etc.
Cheryn from So California
5x9mm AN
Middle-fossa surgery at House Ear Institute, 8/19/05
Dr. House & Dr. Schwartz

ljedwards

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Re: New to the AN Club
« Reply #5 on: July 08, 2005, 02:23:57 pm »
If possible, take someone with you to your doctor appointments.  Four ears are better than two!

A couple of sites to check out.  1)  www.andb.info/newbies/  It has questions to ask during dcotor appointments.  2)  www.coollist.com/group.cgi   A listserv begun by former members of the old ANA listserv who liked that format better than a forum.

Jeanne
ljedwards
GK 1998  left side 2.4 x 3.5cm
Midwest GK Center
Kansas City, MO

Desilu

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Re: New to the AN Club
« Reply #6 on: July 08, 2005, 05:38:17 pm »
Hi, I am new to this website also. I have an AN about the same size as you. Mine is 3.8x5x7.5mm. I am going to have surgery at House Ear Clinic on July 26th. Dr Brackmann will be doing the surgery. This website has been a wealth of information to me and the people you will meet through all of this are amazing. I have done my homework and believe I have made the best choice for myself. I'm sure you will do the same. Good luck to you! Ann
HEI July 26, 2005
5mm X 8mm Left AN
Middle Fossa
Dr. Brackmann & Dr. Hitselberger

David Wrubel

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Re: Thanks David...
« Reply #7 on: July 08, 2005, 10:29:52 pm »
I have found some terrific information here. ...How did people do this before the internet?

You know, that's an interesting point. When I was diagnosed 5 1/2 years ago, there was an Internet certainly, but the information on it was nowhere near as...abundant...as it is today. It took a lot of slogging through cyberspace to find what i was looking for. And there used to be these incredible arguments between radiation proponents and surgery supporters. I don't know if that still goes on very much, but those chat room fights weren't very helpful if your tumor size ruled out radiation in the first place.

Washing your hair...after you're released but before you have the staples removed (doesn't hurt). Something that I've never seen posted happenend to me while still in the hospital. Every once in awhile, when I opened my eyes, the room appeared to be rotated 90% to the left. I'd close them, open them again, and things were normal. Very weird. This happened numerous times for about three days, not everytime, but often. Funny thing happen after brain surgery!

A friend of mine is at House right now. We used to live in the same town in CT, her last name is one letter off from mine, and she also has an AN. Surgery was yesterday and so far everything looks great.
Regards....DW

5+ cm right side AN removed at House Clinic, Drs. Friedman & Hitselberger 4/13/2000, age 47.  Facial nerve intact. No eye problems, headaches, or balance issues. Drove 6 weeks later. 1st biz trip 8 weeks later. Huge tumor....great outcome.