ANA Discussion Forum

Pre-Treatment Options => Pre-Treatment Options => Topic started by: lrobie on January 13, 2012, 01:37:24 pm

Title: Response from House
Post by: lrobie on January 13, 2012, 01:37:24 pm
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.   :-\
Title: Re: Response from House
Post by: Jim Scott on January 13, 2012, 01:53:39 pm
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 
Title: Re: Response from House
Post by: chance1212 on January 14, 2012, 07:47:25 pm
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.
Title: Re: Response from House
Post by: CHD63 on January 15, 2012, 08:10:00 am
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
Title: Re: Response from House
Post by: ppearl214 on January 15, 2012, 08:22:09 am
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
Title: Re: Response from House
Post by: leapyrtwins on January 15, 2012, 10:32:37 am
Totally agree with Phyl on this.

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

Jan
Title: Re: Response from House
Post by: Jim Scott on January 15, 2012, 02:29:04 pm
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
Title: Re: Response from House
Post by: lrobie on January 15, 2012, 03:24:17 pm
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
Title: Re: Response from House
Post by: ppearl214 on January 15, 2012, 03:53:03 pm
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
Title: Re: Response from House
Post by: mindyandy on January 24, 2012, 10:11:27 am
Lisa
I do hope your MRI is good on Feb7th. If you do decide surgery I will be having it March 7th at House  ;D

Mindy
Title: Re: Response from House
Post by: alabamajane on January 24, 2012, 05:00:51 pm
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..
Title: Re: Response from House
Post by: jaylogs on January 28, 2012, 02:01:53 am
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
Title: Re: Response from House
Post by: james e on February 04, 2012, 09:16:29 am
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
Title: Re: Response from House
Post by: Jim Scott on February 04, 2012, 03:42:10 pm
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
Title: Re: Response from House
Post by: lrobie on February 04, 2012, 06:41:47 pm
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.
Title: Re: Response from House
Post by: leapyrtwins on February 16, 2012, 04:10:54 pm
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.

This is VERY important.  You should have complete and utter confidence in your docs and feel like you matter to them.

I think you are on the right path.

Good luck,

Jan
Title: Re: Response from House
Post by: Mei Mei on February 25, 2012, 06:45:47 pm
Ditto to that.   I didn't feel that way at Hopkins.    When I went to the follow up at Hopkins, the resident said I wasn't interested in the BAHA surgery and he walked out of the room with out saying goodbye.   ALL  he was interested in was doing more surgery.    I know Jan likes BAHA and I love Jan, but I have Ehlers Danlos Syndrome and was suffering from pain in the skull and horrific headaches.   I couldn't have more surgery.   You have to trust your gut and go with it.   I didn't do that and didn't go out to Rick Friedman and that is a big regret in my life.
Mei Mei
Title: Re: Response from House
Post by: Mei Mei on March 20, 2012, 08:44:13 pm
Dear Lisa,
I had that same phone call from Dr. Friedman who also recommended Middle Fossa and was also told to go to Dr. Kondziolka at U of Pitt for the CK.   The person who told me to do radiation had gone all the way to Germany for the CK and warned me never to do surgery as it would change my life.    I then listened to the doctor at Johns Hopkins who said that my tumor was in a place where I was at risk for stroke which put me in a tailspin.    I don't think he would admit that now and my nurse asked me today if I had someone with me when he said that.   I had my hard of hearing 98 year old father.    On Friday I had my third surgery to correct the problems coming from the first surgery.    I regretted not listening to the man that said go to U of Pitt or to Dr. Friedman who I don't believe is a salesman as House is a fine place for ANs but am concerned about his comment on radiation although I do believe that ANs might be caused in some part to EMFs or cell phones.   A member of our local support group is a surgeon at GW and when he found out he had an AN, he went to Dr. K on a THursday and was operating on the following Monday.  Not so for a surgical patient, but you do have choices.   I wonder  now what I would have done had I had it to do all over again.   I brought this up to my nurse practitioner who has proved to be a guardian angel in my recovery.   She said that radiation is not without it's side effects and from reading on this forum, that is true.   Dr. K also said at his Symposium speech,   "for those on the Watch and Wait list, what are you waiting for?"   Phyll is right, go with your gut and we will be behind you every step of the way.
Mei Mei
Title: Re: Response from House
Post by: chloes mema on March 21, 2012, 06:42:10 am
My gut is telling me don't do anything but I'm loosing more earing and having the same experience as others where different people are telling me to do different things.  For me it's very stressful and confusing.  But as a friend said, don't worry till they tell you to worry. 

Karen
Title: Re: Response from House
Post by: lrobie on March 21, 2012, 08:09:55 am
Karen,

Because my hearing continues to decline, I feel the need to make my decision.  I wish I would have made the decision in 2009 when I possibly wouldn't be experiencing the symptoms now.  However, now that it's time to make a decision I feel at a loss over what to do.  I lean toward surgery.  If that is what I decide, I want to wait until my son is done with his school year.  I guess I'm procrastinating a little.

Lisa 
Title: Re: Response from House
Post by: mindyandy on March 21, 2012, 08:33:03 am
Lisa
Whatever your decision is who/when etc. Only you can make it. You have to accept whatever decision you make. Whatever that is we are all here for you.  ;)

Mindy
Title: Re: Response from House
Post by: chloes mema on March 22, 2012, 11:13:18 am
Lisa, after following your posts and questions they made me stop and reevaluate my situation.  When you posted about the AN totally filling the IAC and what would radiation do to the nerves I thought I need to get moving on my decision because so far (at least last MRI) it was in the IAC but not too big so need to arrest it before it gets too big.  Since following your posts I've decided on "interviewing" a doctor and a radio-oncologist after next weeks MRI.  Also, to send copies to several doctors across the U.S. for phone consultations.

Thanks to you and others for so much good information and encouragement.   ;)

Wishing you well in your endeavors.

Karen   
Title: Re: Response from House
Post by: Chances3 on March 22, 2012, 11:44:38 am
Hi Lisa,

I had a Middle Fossa operation 17 months ago.  I chose surgery because I had severe and debilitating vertigo attacks of the full spin variety.  The frequency was increasing at an alarming pace - every 3-5 days. 
My first introduction to this site was 4 months after my surgery because I was frustrated by the slow recovery and I wanted some advice.  I never realized how many posts there are with people in the wait and watch mode.  For me, I felt that I had something growing in my head and I wanted the damn thing out.  My doctor had me see his associate to discuss radiation, but I was set on a surgical removal even though I met with the other doctor.  Being a veteran of operations, ( I have had three other prior surgeries unrelated to an AN ), I just figured this is no big deal.  Well I have to say that brain surgery can be challenging, but I made the decision that I wanted a surgical solution to my tumor.  I had a 1 year MRI last fall and I am clean, that was more important than the post op symptoms I struggle with to this day.  Having said all of that, I have read many many posts here on HEI and the doctors there.  It seems everyone has had good results, so it just doesn't make sense why this doctor would talk about radiation like that. 

What I also have learned from ANA, your medical decisions are yours to make.  The people who participate here have some very sound advice and opinions.  Many of them have been through quite a bit in their lives.  But at the end of the day, it's lonely at the top, so it's always up to you to make that decision.  My only suggestion is to learn as much as you can, speak with as many ANA friends as possible so that you are fully informed before you decide what to do.  If you are a person of faith, I would seek out God as well to give you guidance.  Sorry for the long post.

God Bless.
Title: Re: Response from House
Post by: teresalpn on July 11, 2012, 10:01:54 pm
First, let me say to all,  I am so glad I FOUND THIS FORUM.  I have been following my an for three years and it had been growin slowly until my last MRI my neurosurgeon wants to see me but he, appears very non-connected to the patient, very arrogant.  I am not happy with his very little talk in and out of the room vey quickly.  I know that he can make more money from several back surgeries than my 12 hour surgery.  I needed more tlc at that time, my mom felt the same..  My Ent recommended a second opinion.  So I have an appt. at Vanderbilt in Nashville.  The staff has been very supportive an welcoming.  Hope all goes well. Does anyone have a opinion about this hospital. and Dr. William Bennet?! 

Thanks for your input
Title: Re: Response from House
Post by: millie on July 21, 2012, 07:33:23 am
Hi!
I think I received a response from House last night!  I plopped my MRI's in the mail next day delivery on Monday July 16th and the call came from St. Vincent's last night.  However!  My husband was on the phone and did not know the number when it appeared on caller ID so he did not break his conversation.
I hope they call again.  I will try calling them Monday.
I am impressed with the promptness.
Will post what they say and who I speak with, of course.
MIllie
Title: Re: Response from House
Post by: mindyandy on July 21, 2012, 11:23:40 am
Millie
House is very prompt to read your MRI & respond. Keep us posted!!!

Mindy