Response from House

[lrobie]

I received my call from Dr. Friedman yesterday.   Unfortunately, when you get that call, you forget everything you're supposed to ask.  I was driving at the time and had to pull over.  He first asked me what my goals were.  I was a little confused with that question because I would assume most people would state the obvious...remove or kill the tumor without any complications.  Then, before giving my answer, he went on to state that my tumor is small measuring at 7 mm.  Again confused because the last size given was between 9 & 10 mm.   I had to ask him if he was looking at my most recent MRI and then he realized that he wasn't reading his notes correctly.  I proceded to tell him that I feel like my symptoms are getting worse...hearing is worsening, tinnitus louder and the balance issues are a little scary now.  He said that most people with a tumor my size would seek treatment if the symptoms were bothersome and if they wanted to have less complications.  He felt that radiation would most likely make me lose my hearing.  With the surgery, they have a percentage in the 70s of preserving hearing.   He said that he would recommend middle-fossa surgery.  I know several of you have stated that House does not try to talk you into anything, however, I felt almost as if I was talking to a salesman trying to sell a product.  He kept repeating that House is the best facility in the U.S. to treat ANs and that they have the best success rates.  Then came my final question...  I asked him what he thought about radiation and some people/doctors stating that it could cause malignancy and shared that I wasn't aware of any research/findings that have been done to prove that.  His answer was that he has seen more people die who have been treated with radiation than those who had their ANs surgically removed.  I was listening with my good ear, so I don't believe I misunderstood.  I truly am not trying to say anything bad about Dr. Friedman or House, but some of these things just hit me the wrong way.  I'll be interested to hear what other people think of my conversation.   

[Jim Scott]

Liza ~

Thanks for sharing the details of your phone call from Dr. Friedman of HEI.  From what you've written, I agree that he would seem to be advocating AN surgery over radiation, at least in your case.  I'm a bit skeptical of his statement that he has seen more people die who have been treated with radiation for an acoustic neuroma than those who have had surgery.  However, he may simply be stating his experience and I cannot discount that. Your overall feeling that you were being 'sold' is probably correct.  After all, HEI and Dr. Friedman are in business and are not a charity.  However, from everything I've read from those who engaged Dr. Friedman (and HEI) he is a very fine doctor so even if he does promote himself (and surgery) a bit, you wouldn't be wrong to buy his 'product'.

 However, as we often remind folks, as good as HEI may be, there are other doctors around the country that are equally good with AN removal/radiation.  I had one of those (in Connecticut).  I would take the time to seek them out.

Jim 

[chance1212]

idk I would at this point welcome someone selling one idea over another. The pressure on the patient to make the choice without any doctor tilting the scale one way or another is tough too. Don't get me wrong, I probably would have responded like you did. It's always easier to see someone's situation than your own. Our ANs are very similar as are the symptoms. Keep us updated.

[CHD63]

None of us can speak for anyone else's experience and each of us is in an extremely unique situation.  So please do not feel that "one size fits all" when seeking treatment of an acoustic neuroma.

I will only say that in my situation, I did not feel any pressure by any of the doctors I consulted.  I also have to say that I sincerely hope that doctors who have taken the hippocratic oath, do not view patients as a "cash cows."  I certainly never had that feeling about Dr. Friedman.  Never in our conversations did he try to sway me towards surgery nor towards treatment at House Clinic.

Clarice

[ppearl214]

It is public knowledge that Dr. Friedman is anti-radiation as he has publically noted it many times over the years to many of us, even as recent as the ANA symposiums in casual discussions (not at workshops).  This comment is not to discredit Dr Friedman..... it's just a fact of how he feels.  HEI is a forerunner in AN surgeries as are many other facilities, such as MGH, Mayo, Stanford, Shands, Virginia Mason, just to name a few.  HEI certainly knows their stuff as do many other facilities.

As with any medical treatment for any medical ailment in life (cancers, AN's, etc), there are risks involved that have to go into our decision-making process. As noted, each AN journey is unique unto itself and there are many factors that need to be considered when choosing a treatment option (regardless if surgery or radiation).... such as... will my insurance cover (esp. to travel out of state, if there is a local facility that will perform the same?), costs, experience of the treating team (should be a team approach), etc... and most importantly, who will do the immediate and long-term follow up care, esp. if there is immediate need/emergency situation (and am I willing to do the travel for the follow ups, if needed)?

Just a few things to ponder when making the decision..... 

One thing we tout around here over the years.... the gut. What does your gut say?  Where does it guide you?  Most times in life, the gut truly does know the proper direction in life (I recently found out when I didn't listen to my gut re: my job.... I shoulda listened)...... listen to your gut... it will know.

Just my 2 cents. I've been up early and had too much coffee.

Hang in there!
Phyl

[leapyrtwins]

Totally agree with Phyl on this.

Don't understand the statement "he's seen more people die from radiation"?

Jan

[Jim Scott]

Totally agree with Phyl on this.
Don't understand the statement "he's seen more people die from radiation"?

Jan ~

I can only speculate but I assumed he didn't mean that their death was directly caused by radiation, only that those he knew of that underwent radiation had a shorter lifespan than those who underwent AN surgery, making a very tenuous link to longevity and the patients choice of treatment for their AN treatment.  Frankly, I don't believe that there is a causative relation between radiation or AN surgery and lifespan but using Dr. Friedman's criteria, because I underwent both surgery and radiation, I guess it's a wash.

Jim

[lrobie]

Thanks for all your responses.  It makes me feel a little better actually.  As far as my gut feeling on what to do, I think I've known all along but my gut needs to talk to my brain and make a final decision.     My six month MRI/check up at UPMC is on February 7th.   I'm hoping to make a decision then or shortly thereafter.  Thanks again.

Lisa

[ppearl214]

As far as my gut feeling on what to do, I think I've known all along but my gut needs to talk to my brain and make a final decision.    

Lisa

Lisa, that exact comment, for me, is either what got me into trouble or saved me.... in the case of my AN treatment option, it "saved" me (ie: I went with my gut and am a success story..... as we know, "individual results may vary"....) and when I let my brain talk to my gut and my poor noggin' made the final decision (ie: recent job issue).... I have paid the price (ie: not a good situation).

Yet, that is just me... everyone is different. Regardless of what you (or anyone else here) decides, know that I not walk behind you but beside you......

Phyl

[mindyandy]

Lisa
I do hope your MRI is good on Feb7th. If you do decide surgery I will be having it March 7th at House 

Mindy

[alabamajane]

Lisa,
I agree with most on here, House has a great reputation but they are not the only ones that have a great reputation. And so many other issues come into play when making this decision. I too spoke with a Dr from House Clinic, it just was not Friedman so can't speak to his demeanor ,, I spoke with Dr Slattery. He was very informative and did agree that w&w was an "ok" option for me the first time we spoke. The next year however, he thought I should have surgery, as radiation was not an option for me, and of course he wanted to do it.. Like Jim says, that is their business after all.. I did not feel pressured although he did have his scheduling nurse call me the next day to "set up" a time to discuss insurance etc.. I just told her I was not sure I was coming out there at that point. Don't be rushed into a decision by ANYONE,, you have to be comfortable with the decision because it is your life and body and most of all,, you have to live with the results of that decision and you don't want to second guess your decision after the fact..... look at it as more info you have gathered,, file it,, and refer back to it,, but if you don't have a good feeling,, chaulk it up to additional info... all the opinions you can get,, the better I feel.. then you will feel like you have gathered sufficient info to make your difficult decision.. Sometimes we have "life" issues that keep us from going to some of these "world famous" facilities with wonderful reputations,, but that does not mean you can not find a doctor that you are comfortable with who has the experience needed to perform the treatment you decide on..  experience is a must but you also know your personal options and needs.. just my two cents worth... Jane  Good luck,, we are all here for you always..

[jaylogs]

As an HEI alumn, I can only tell you that they are great in what they do...so as Jim said if you did go there you'd be in great hands.  As far as the procedure itself...I had the Middle Fossa done, and I did indeed kept my hearing, although nowadays if I plugged my good ear and tried to hear through the affected ear, I only hear muffled noises...if someone was speaking to me on that side, I can't understand what they say.  Which is why I got a BAHA.  I think invariably, except in a few cases, if hearing is preserved, it WILL be affected to some degree.  So that's something else to consider. I know this is the rough time, trying to decide what to do.  As Phyl said, what your gut tells you will ultimately dictate what you will do and it will be the RIGHT decision! Good luck and let us know what you decided (and where).
Jay

[james e]

Years ago, I interviewed a stockbroker, looking for someone I could trust. Someone with good judgement. Someone with a good documented track record. I found a person that had all the above, but their answers were so impersonal that I just could not give him my business...very practiced answers...I was just another source of income...give me your money or move on type of person.

My wife's best friend has a sister who is a nurse at HEI, so we contacted her and she had a doctor there call me after looking  at my MRI. He was someone I could trust. Someone with good judgement. Someone with a documented track record. But his answers were impersonal...and it is the first time I realized how much of a BUSINESS the medical profession is. I was just another source of income...a house payment, a car payment. Now, that was just MY feelings. It is not a reflection the HEI, but I got the same feeling that Irobie got.

But, I wanted the best treatment, and EVERYONE was talking about the HEI as the best in the world. Even Rush Limbaugh went there. Couple of problems here. I live in Texas, and HEI is in LA. What if I have a problem and need some follow up? Another trip out west...more travel expense...not very convenient...stay in a hotel...built in problems. So I contacted Texas posters about their medical experiences right here at home, and used PMs for more information.

I found a great team in Houston. They were all business. ANs are what they do. No BS answers. They told me what to expect if I got radio treatment vs surgery, but did not try to sway me one way or the other. I just knew instantly that this was going to be my doctor. Absolute pros. I decide  for surgery, and it has worked out very well for me.

I have no doubt that HEI is a great place, based on the responses from their patients. It just was not a comfortable place for me. I am positive there are lots of first rate teams in all the major cities in the USA. After my surgery, I told my doc I was the benefactor of his intelligence, his skill, and his discipline. This surgery is about YOU, not the doctor. Find one you are comfortable with. There are lots of great docs out there. Wishing good luck for you!

James

[Jim Scott]

Years ago, I interviewed a stockbroker, looking for someone I could trust. Someone with good judgement. Someone with a good documented track record. I found a person that had all the above, but their answers were so impersonal that I just could not give him my business...very practiced answers...I was just another source of income...give me your money or move on type of person.

My wife's best friend has a sister who is a nurse at HEI, so we contacted her and she had a doctor there call me after looking  at my MRI. He was someone I could trust. Someone with good judgement. Someone with a documented track record. But his answers were impersonal...and it is the first time I realized how much of a BUSINESS the medical profession is. I was just another source of income...a house payment, a car payment. Now, that was just MY feelings. It is not a reflection the HEI, but I got the same feeling that Irobie got.

But, I wanted the best treatment, and EVERYONE was talking about the HEI as the best in the world. Even Rush Limbaugh went there. Couple of problems here. I live in Texas, and HEI is in LA. What if I have a problem and need some follow up? Another trip out west...more travel expense...not very convenient...stay in a hotel...built in problems. So I contacted Texas posters about their medical experiences right here at home, and used PMs for more information.

I found a great team in Houston. They were all business. ANs are what they do. No BS answers. They told me what to expect if I got radio treatment vs surgery, but did not try to sway me one way or the other. I just knew instantly that this was going to be my doctor. Absolute pros. I decide  for surgery, and it has worked out very well for me.

I have no doubt that HEI is a great place, based on the responses from their patients. It just was not a comfortable place for me. I am positive there are lots of first rate teams in all the major cities in the USA. After my surgery, I told my doc I was the benefactor of his intelligence, his skill, and his discipline. This surgery is about YOU, not the doctor. Find one you are comfortable with. There are lots of great docs out there. Wishing good luck for you!

James ~

Thanks for that incisive input. 

Upon my AN diagnosis, I was seeking a 'local' doctor to treat me but the first neurosurgeon I consulted seemed intimidated by the size (4.5 cm) of my tumor and the fact that it was pressing hard on my brain stem.  After looking at my MRI films, he said he'd "have to get back to me".  As my wife and I left his office we looked at each other and, almost as one, exclaimed "no way!"

The next day, my wife contacted the neurosurgeon that had operated on her spine a few years earlier  (he doesn't operate on ANs) and asked his secretary if this doctor could refer us to a neurosurgeon that could handle my case.  She said that the practice (7 doctors) just happened to have the best AN neurosurgeon in the state on staff.  She immediately contacted this doctor's secretary, made an appointment (for the next day, at a time we picked) and said that this doctor would have my MRI CD sent to him (it was done at a hospital next to his office) and he would have a plan ready to present when we saw him (approximately 24 hours later).  I was impressed.  The doctor, a courtly gentleman (originally from Georgia and a Yale Medical school graduate) was in his 60's and had over 35 years of experience operating on acoustic neuromas.  He was very attentive to my concerns regarding the (inevitable) risk of post-op facial paralysis, headaches (he planned to use the Retrosigmoid surgical approach) and, overall, my desire to maintain my quality of life, post-op.  His attentivness - 45 minutes and no inturruptions, compassion and obvious concern for my post-op condition were manifested in his carefully formulated plan.  'Debulk' the large AN to relieve the pressure on my brain stem and then, 90 days later, employ FSR to radiate the remaining tumor and render it essentially unable to replicate while apsring the surrounding brain tissue as much as possible.

Long story short: I enthusiastically hired this impressive neurosurgeon - and he 'delivered'.  The 9-hour surgery went very well; no headaches or facial paralysis and I was home from the hospital within 5 days.  My recovery was relatively swift.  The FSR was completely uneventful and within a few months I was able to resume my normal activities.  The neurosurgeon had agreed, with no coaxing, to accept whatever fee my insurance carrier paid.  They paid $23,000. - and that was shared with his protege who assisted him in the surgery.  In comparison, the hospital bill (paid by my insurance) came to just under $60,000. for barely 5 days.     

My point is to amplify yours; that there are many excellent neurosurgeons out there.  I consider myself very blessed to have found one of them (Dr. Isaac Goodrich).  As a coda to my story: my wife and I had previously agreed that if we couldn't find a 'local' doctor to perform the necessary AN surgery, I would have it done at HEI (we live in Connecticut).  Who knew? 

Jim

[lrobie]

Thanks for the additional responses.  I feel very comfortable with the doctors I've been seeing at UPMC in Pittsburgh.  I don't feel like I'm just a number and I feel they are very knowledgeable.  At my appointment on Tuesday, 2/7, I will be asking them more specific questions before deciding on treatment.