House Patients - Need Some Feedback

[lrobie]

Good Friday Afternoon!

I am nearing my final decision for treatment.  Because it looks to be that I will be going to House for surgery, I need some feedback from some of you about your surgery experiences/outcomes.  It doesn't have to be long.  I want to reassure my husband that I'm making the right decision.  He is worried that we will go there to find out that we don't like Dr. Friedman.  I can't see how anyone would not like him after what I've read on the forum.  I tried going through the forum and was going to cut and paste what I could find, but I could be here for hours and he could be reading for a couple of days.   

Thanks so much in advance.

Lisa

P.S.  I have decided that we will fly home.  Haven't decided on the train there yet. 

[JerseyGirl2]

You've made excellent decisions on both House for your surgery and an airplane for your return trip home!  I can only speak for myself, but I will always be very thankful that I decided to travel from New Jersey to House for my AN surgery four years ago. I would go there again in a heartbeat. This is not to say that there aren't superb AN surgeons elsewhere in the U.S. -- this is obvious from all the posts on this forum -- but House turned out to be the right choice for me. I certainly think that your husband -- and you! -- will be very pleased with all the personnel with whom you'll come into contact at House and St. Vincent's Medical Center. We found everyone to be extremely professional, compassionate, and dedicated. It was the most incredible medical experience I've ever had.

Best wishes as your surgery date approaches.

Catherine (JerseyGirl 2)

[jaylogs]

As a House Alumni (2.5 years ago) I can only say good things about my treatment there.  You can definitely tell they know what they are doing, and that they've been doing this a long time.  It definitely helps the anxiety level when you know the people who will be rooting around in your head are extreme professionals.  You're definitely in great hands!
Jay

[cindyj]

Ditto to what Catherine and Jay said!  My husband, mother and I were all so very pleased with all of the care we received out there - from the House people to everyone at St. Vincent's...and Dr. Friedman and Schwartz gave us such a feeling of confidence, and then delivered on the goods   Even the anesthesiologist was above and beyond what I have experienced in past surgeries - he spent a great deal of time talking w/ us prior to surgery and even visited me in my room post-op - never had an anesthesiologist do that...Even though House is "big AN business," if you know what I mean, I never felt like just another number.  St. Vincent's is so small and they are so, so familiar with AN patients - it was just very comforting...I'm not putting this in to words very well, but I hope you get the gist of it

Cindy

[pjb]

Good Friday Afternoon!

I am nearing my final decision for treatment.  Because it looks to be that I will be going to House for surgery, I need some feedback from some of you about your surgery experiences/outcomes.  It doesn't have to be long.  I want to reassure my husband that I'm making the right decision.  He is worried that we will go there to find out that we don't like Dr. Friedman.  I can't see how anyone would not like him after what I've read on the forum.  I tried going through the forum and was going to cut and paste what I could find, but I could be here for hours and he could be reading for a couple of days.   

Thanks so much in advance.

Lisa

P.S.  I have decided that we will fly home.  Haven't decided on the train there yet.

I did not go there now I wish I had from what I have been reading you are in excellent hands I cannot stress that enough to make sure your team is the BEST !!...Good Luck

Best Wishes,

[arkansasfarmgirl]

I was very fortunate that I had my surgery at House, as it turned out my tumor was larger and more difficult to deal with than was expected (and it was expected to be bad).  I have had a wonderful outcome after a warp speed recovery.  My sugery was in November 2008, and if it wasn't for being deaf in one ear, it would seem like a bad dream.  Loved the docs and other staff there, they were awesome to deal with!!

vonda

[CHD63]

Lisa .....

No one can really tell someone else "You will love Dr. So & So ....." because each of us have unique personalities, as do the doctors we choose to invade our brains.

That being said, I will forever be grateful for making the decision to go to House for my second AN surgery.  I found both Dr. Friedman and Dr. Schwartz to not only be excellent in their fields and professional in their demeanors, but they also treated me like I was an intelligent person and that they cared deeply about me having a good outcome from my surgery.  They answered all of my questions completely, without hesitation.  I really felt like they were my own sons who took care of me as if I were their beloved mother (and I am old enough to be their mother  ).

By the way, I am sure glad you have decided to fly home!!

Clarice

[rvb755]

Lisa, Dr Friedman and Dr Schwartz removed my tumor in August last year and I absolutely could not be more pleased with the job they did.  They removed 100% of my large tumor and I have retained full facial movement.  I recently had a 6 months follow up MRI which showed no signs of tumor.  I would go back to House/St. Vincent's in a heartbeat for treatment.

Rick

[lrobie]

Thanks everyone for responding.  Now I just have to get my husband to sit and read the feedback.  He told me the other day that he's excited about going to Los Angeles.      I wish I could say the same.

Lisa

[Jeff]

I have nf2 and have had 3 surgeries at House, all performed by dr. Friedman. Each had different outcomes. But, I kept going back because for me, they are great. I wish you the best.
Jeff

[duke]

Lisa - I am trying to decide between middle fossa surgery at House or GK closer to home.  Did you consider both?  What helped you make your decision?  I was diagnosed earlier this month with a small tumor and have minor hearing loss and tinnitus.  Looking forward to following your surgery outcome.  I have heard great things about House and in only two weeks have already decided that if I go with surgery that I'll go there even though I live in the D.C. area.
Hilary

[lrobie]

 Hilary,

Welcome to the forum.  As you can see from my signature line, I was originally diagnosed in 2009.  I stayed in the watch and wait category because I wasn't having any symptoms.  Then in spring 2011, I noticed that I couldn't hear as well along with the tinnitus becoming a constant noise.  By the time of my check-up in August last year, the hearing was definitely worse and the tinnitus was louder.  The MRI showed growth.  My doctors at UPMC felt that it was time to decide on a treatment.  They suggested middle fossa or cyberknife.  I started my journey of 2nd and 3rd opinions.  The Cleveland Clinic neurosurgeon told me I was going to lose my hearing no matter what, but suggested retrosigmoid.  The radiologist that I saw there said he would notrecommend radiation treatment because I was young and there haven't been enough studies on the long-term outcomes (20-30 years).  I procrastinated and it was time for a six month MRI at UPMC.  My AN had grown again.  They changed my surgery to translab because I told the surgeon that I didn't like to use my left ear on the phone anymore.  I was even more confused.  I found a neurosurgeon in my hometown who had moved here from Pittsburgh and was sought out by many people for similar issues.  I met with him and he suggested gamma knife in Pittsburgh.  He couldn't do surgery for me because he doesn't have a neurotologist locally that he could team up with.  He was really pushing gamma knife.  He said something else to me that, when thinking back, steered me away from UPMC for surgery.  I have always been skeptical about radiation.  I didn't like the idea of the tumor still being in my head.  For a majority of people, the complications/risk/symptoms after surgery are up front.  With radiation, they can come at any time.  I didn't like that idea. 

In choosing who to go to for surgery, I believe that your outcome is based (for most people) on the skill of the surgeons.  That's why I chose House.  I have read many stories from people on this forum and on the Facebook AN/VS site and  a majority of them are doing just fine.  Even though the trip is going to cost me quite a bit of money (mini-vacation included), I feel that it will be worth it.  I am nervous, but am trying to keep a positive attitude.  As others will tell you, the decision is yours to make.  However, you will read all sorts of stuff on this forum that will help to guide you in making your decision.

Best of luck,

Lisa