"First Do No Harm"

[mesafinn]

Hello All,

I am wondering if there's anyone on the Board who has received unbiased and balanced information from their physician about the best approach for their AN.  Those physicians on the ANA site are listed because they have team approaches and are to treat the specific patient and her/his specific AN.

Instead, I continue to run into physicians who "know better" than anyone else and virtually all comply to what others here have received for treatment advice.  What I mean is that if I contact the House Clinic (and I have), they recommend surgery.  If I contact Dr. Chang at Stanford (and I have), he recommends Cyberknife.  If I contact the University of Pittsburgh (and I have), they recommend GK.  They each tell me, "Whatever you do, don't have surgery have GK" OR "Whatever you do, don't have GK have surgery" and etc.

I understand we're encouraged to do our own education, but I'm wondering if anyone has found someone who will take the time to go through the pros and cons of each treatment option without bias and prejudice.  The Hippocratic Oath requires them to "First Do No Harm," and yet--if virtually each of us receive the same advice from the same institution for the same particular type of treatment aligned with the Center rather than the Patient, I don't see that as the patient coming first and potential harm (because all options haven't been explored and/or explained) occurring.

I'm convinced I'm missing something--and/or someone--so if you have found a physician who weighed treatment options with you, I think many of us could benefit from hearing about your experience!

Thanks.

P.

[Jim Scott]

P ~

Because my AN was 4.5 cm when discovered, surgery was my only option.  However, I was very concerned about post-op (a) facial paralysis and, (b) headaches.  The neurosurgeon I was referred to (by another neurosurgeon who did not perform AN surgery) was highly experienced (30 years) and very respectful of my concerns.  He flat-out assured me that his AN surgery patients "don't have post-op headaches" and he presented me with a plan to de-bulk the tumor (peeling off layers) and sever it's blood supply, then, following a 90 day 'rest', I would undergo radiation (FSR) to destroy the remaining tumor's ability to re-grow.  This approach was intended to spare doing damage to the facial nerves and to "destroy the tumor's DNA", as my doctor put it, without doing harm to surrounding brain tissue.  The neurosurgeon teamed with a very talented radiation oncologist to 'map' the radiation treatments (using a 'fresh' MRI and CT scans.)  This mature neurosurgeon stated that he did not perform AN surgery unless the patient's tumor was too large for radiation, as mine was.  This was proven some time later when I recommended him to another AN patient (via these forums).  Because her AN was relatively small, after he viewed her MRI scan results, he promptly escorted her to the radiation oncologist's office and did not consider operating on her.  She was a bit nonplussed because I had so highly recommended him but on reflection, I realized that the good doctor was simply being true to his word regarding the patients he operated on. 

Long story short: the surgery was a resounding success.  My pre-op symptoms (dizziness, loss of the sense of taste, stabbing pain on AN side) disappeared almost as soon as I awoke from the anesthetic.  No headaches and no facial nerve complications, either.  The follow-up radiation was uneventful but successful.   Unfortunately, my hearing in the affected ear had been irretrievably lost due to my procrastination about seeing a doctor for my symptoms.  I retain a very slight case of 'dry eye' but it is minor, doesn't require drops to alleviate and doesn't negatively impact my lifestyle.  I consider myself truly blessed. 

This neurosurgeon has now retired but my point here is that not all doctors reflexively recommend 'their' specialty (surgery or radiation). There are many members on these forums who have had a neurosurgeon or radiation oncologist recommend either approach, even if it wasn't their specialty.  I suspect that doctors who routinely recommend only one approach probably believe it is best and have had good outcomes with surgery or radiation.  That is why they are on the staff of an institution that focus on surgery or radiation.  However, it can be confusing when respected doctors treating acoustic neuroma patients firmly contradict each other, sometimes to the point of being dismissive of an approach they do not specialize in.  I would suggest that you seek out a doctor with lots of AN experience and when you find one - as I did - with experience, humility and a real concern for you rather than how soon they can schedule a procedure, hire that doctor.   

Jim

[LakeErie]

Maybe a different perspective would help you, a different way of looking at your position.
There is not necessarily a " best " method of dealing with many medical issues that have more than one treatment method.
For example, you have been told by House, for many people the gold standard of surgery for AN's, that you are a good candidate for successful surgical treatment. Similarly Dr Chang at Stanford, considered by many the gold standard of care in CyberKnife  has advised you CF would work well for you. UPMC is a well known GammaKnife treatment center and informed you GF would be appropriate for you. You have a choice, which treatment do you prefer?
One person may feel radiation leaves uncertainty about regrowth and would prefer surgery. Another person may feel " no way I'm having a hole drilled in my head " and opt for radiation. If opting for radiation, one person may not want a frame attached to his head so he would take CyberKnife. Or another person may want to get it over with in one day and take GammaKnife.
Your research so far has given you choices from three leading treatment centers with vast experience in their respective fields. Your chances of a good outcome are excellent from all three. Rather than being confused, consider the three options and see if one doesn't stand out as the best for you based on what you want. I don't think any doctor can make up your mind for you on this, only you can. Good luck.

[arizonajack]

I don't see anybody violating the "Do No Harm" thing by touting their own specialties or preferences. That's pretty much a given in even the medical business.

Here's another perspective for you.

You go to a Chevy dealer and they will tout all the advantages of buying a Chevy.

You go to a Ford dealer and they will tout all the advantages of buying a Ford.

You go to a Toyota dealer and they will tout all the advantages of buying a Toyota.

Then you go to Consumers Reports and you get all the objective information about all three brands and then you make a decision based on what works best for you.

Yeah, Crazy ArizonaJack said it:

Picking an AN treatment is like buying a car.

It's a big investment and you are stuck with the consequences of your decision for many years to come.

But it has to be your decision based on the best information you can get from the best authorities and what you decide is best for you.

[rupert]

 The University of Pittsburgh Medical center has many doctors .  What doctors did you talk with?  It is a very big place.  There are doctors there that do both surgery and GK along with CK.   My first visit to UPMC was a consultation for surgery with Dr. Hirsch.  He went over the surgery procedure and methods that he uses.  He also went over CK and GK  along with fractionated radiation, and told me those were also options and recommended two Neurosurgeons in UPMC to talk with.   I went to both and eventually went with GK.  Of the three doc's I talked to at UPMC, they were all open to all options. 

[prwkent]

mesa- I had the exact same experience with the AN doctors.  I consulted with the best neurosurgeons in NYC and House. I received very different opinions about what was the best option. Very strong different opinions  Both treatments have very good statistics for what that is worth.  Surgery has great outcomes, yet the recovery is not necessarily so simple.  With surgery it seemed you knew where you were as soon as you came out.  Gamma Knife also has great outcomes, but the side effects often come about later.  For me it became about a lifestyle decision.  I decided that I wanted to continue my life as I knew it and deal with any increasing side effects if and when they develop rather than immediately upon waking up after surgery for which there would be weeks of recovery.  I had near normal hearing going into the Gamma Knife procedure today.  I also have had some dizziness since I was diagnosed. Surgery would resolve this by severing the balance nerve.  Gamma Knife may cause the nerve to stop functioning or the tumor itself will do this.  This is how it was explained to me.  I will post what happens as time goes on.  I can tell you that the Gamma Knife procedure today was simple and painless, and except for a headache, I am feeling fine.  This is day 1.  Pam

[arizonajack]

I can tell you that the Gamma Knife procedure today was simple and painless, and except for a headache, I am feeling fine.  This is day 1.  Pam

Pam,

I am two months post GK and all is well.

The aches from the pins go away in about a week or two. Otherwise, you should be fine.

[rupert]

  Gamma Knife also has great outcomes, but the side effects often come about later.  For me it became about a lifestyle decision.  I decided that I wanted to continue my life as I knew it and deal with any increasing side effects if and when they develop   

    EEK!   I hope not.  I don't believe increasing side effects as time goes on would be the norm with GK.   Obviously you have researched this some.  What side effects are you talking about that come about later.

[arizonajack]

  Gamma Knife also has great outcomes, but the side effects often come about later.  For me it became about a lifestyle decision.  I decided that I wanted to continue my life as I knew it and deal with any increasing side effects if and when they develop   

    EEK!   I hope not.  I don't believe increasing side effects as time goes on would be the norm with GK.   Obviously you have researched this some.  What side effects are you talking about that come about later.

There's an old saying about worry.

If something bad is going to happen whether your worry or not worry, then there's no sense in worrying. And if it's not going to happen, there's no sense in worrying.

Two months post GK and I have no new side effects. If I get some later I'll deal with them later. I don't worry about it.

[Bonnie B.]

I saw neurosurgeons, radiology oncologists, neurotologists and ents.  I was told by all to see and speak with all specialities and then make an informed decision.   After seeing all the specialists and reading everything I could, I decided on Gamma Knife.  My AN was 1.7 cm so, it fell into the range where GK would work.  I did not want to have my head cut into so, my decision was easy.   Once you reach a decision, the rest is easy.   

Keep us posted.

[leapyrtwins]

I never had this issue, my neurotologist was totally unbiased towards which treatment I should have.  In fact, since both (radiation & surgery) were options for me, he flat out refused to pick for me.  I asked him several times - looking for the easy way out of making my own decision - but he insisted the choice was mine and he was absolutely 100% right.

There were two key factors here:  1)  my neurotologist does both radiation (GK) and surgery; so he didn't have a personal bias when it came to which was best, and 2)  the size and location of my AN didn't exclude me from one option or the other.

If you haven't already, you should consult with one or more doctors who do both surgery and radiation. 

Jan

[MDemisay]

Dear mesafinn

I concur with Jan's opinion no doctor should push you to choose between options that you have at your disposal. However, there is one other option, which nobody has yet talked about.

That is the option of having all the information gathered for you by a Patient Advocate.

 I used a Patient Advocate to help me come to a decision about treatment in 2012. She did not decide for me but instead provided me with all the information I needed to make a decision on my own. I informed her of the doctors (3) she researched them and I came to the conclusion of which doctor finally did the GK procedure. Not before vetting it and much discussion back and forth using the ANA members here of course!

 You see like you, I was all alone carrying the interviewing process in 2004.  I conducted a 3 month exhaustive interview process with 14 doctors. Now, I am not suggesting that you replicate my wasted summer project, by no means! I didn't want to have a brain operation, after all who in their right mind does! Looking back on it, I was convincing myself that there were no other options than surgery for my large 3.1 cm AN.

What I am suggesting to you is that you select a couple of doctors in each specialty that you choose be it surgery, GK or Cyberknife and supply the information to the Patient Advocate and then go over the information with her/him. By all means, I am not suggesting that you have the Patient Advocate make the decision for you.

That is something that you have to do by yourself. I know it's a decision that is fraught with worry! Many of us have been down that road, unfortunately, it is a decision that you have to make on your own, because once you make it and it is done it cannot be undone!  The Patient Advocate will help you gather the information you need to make the decision that is most comfortable for you.

A Patient Advocate is usually an Registered Nurse, you can Google one in your area, they charge a fee. The advice you receive here is free.


All of the advice that you receive here, is worthy advice, in my humble opinion.

In any event feel free to discuss it with us as you have here.


Mike

[mesafinn]

I am humbled by all the good, helpful, interesting, intriguing, fascinating, and welcomed input, insights, and information.

I just got done whining to my partner that "no one understands."  I caught myself and then logged on here.

It's been so wonderful to have you.

[mesafinn]

I had an extensive consult with an ENT yesterday who was the most objective in terms of equally explaining each treatment option.

But he summarized it this way in terms of symptoms and recovery:  "If you have surgery, you pay up front.  If you have radiation/GK, you will pay later."

He was very specific about the surgical side effects/ramifications/expectations but was far more vague about the "pay later" aspect of GK which he said, "Looks good on paper."  Still, he wouldn't pinpoint what I might be "paying later."  I suspect he's saying the long-term effects of GK are unknown.

Any thoughts on his statement from a surgery versus radiation perspective?

[Mei Mei]

I found the doctor at NY Hospital talked to me about the choices, pros and cons..  The doctor at Hopkins said I would have a stroke if I didn't schedule as soon as possible and that was two months.   The scare tactic won over.
 Mei Mei