Looking for a Place to Land

[Chappi4u]

I never dreamed it would be so difficult to have my AN treated. I am weary from dealing with the prospect of receiving less than what is most beneficial. My local university has the latest cyberknife but has never treated an AN. Since they also have gamma knife, I had to meet with a neurosurgeon to receive approval for cyberknife. I saw him last Thursday and it was a most unpleasant experience. "I've always treated ANs with gamma knife." He present all the reasons for using gamma knife. Every time I tried to talk he belittled me. Nevertheless, I was successful in countering his arguments and held my ground. I felt like I had been in a boxing match. I went home and the self-doubt began. I decided I might not have done enough research. Too many possibilities. Too many potential complications. Too many doctors who profess their way is the only way! Then I thought, I can go anywhere they will see me. I can go to Stanford, 3000 miles from my home in in eastern NC. But do I have to go that far? Dr. Medbery has told me to go someplace else if I'm not comfortable. Should I be comfortable with the local folks and feel I will receive the same degree of success I could achieve someplace else? How is this possible to gauge? Is experience the only differentiator? I need some advice I can count on choosing a new venue or sticking with my present provider. It really shouldn't be like this!

Ignorance is truly bliss!

[Jim Scott]

Chappi4u ~

Hello and welcome.  Thanks for your post.  

My opinion is that you have to feel comfortable and confident with the physicians you choose to treat your AN, whether it be with radiation or surgery (or both, in my case).

If you simply cannot feel secure and confident with the doctor who will be your doctor in this very important medical 'adventure', then you should go elsewhere.  I was prepared to go cross-country to the famous House Ear Instute in Los Angeles (I live in Connecticut) for treatment but lucked out and found a very AN-experienced and compassionate neurosurgeon in a nearby city.  My radiation oncologist was equally excellent.  I hope you can find a more 'local' doctor to work with but if not, do what you have to do.  It's your life and you'll have to live with whatever consequences the treatment brings, be they good or not-so-good.  Naturally, we want you to have a fabulous outcome and stand ready to help, support and advise, as you may need.  

I'm sure some of the members in your neck of the woods will soon add their comments to this thread and try to guide you somewhat as you seek a doctor you can be comfortable with.  

Jim

[Pooter]

Hi chappi4u and welcome to the forum.  Here's my take on this, for what it's worth..  Experience with the doctor treating your AN is pretty darn important.  A little less important is them having a great "bedside manner".  There are MANY experienced doctors that treat AN's all over this country.  So, to answer your question..  If given the choice between an experienced AN doctor with a lousy manner vs an experienced AN doctor with a great manner, I'd go with the one with a great manner hands down.  However, if faced with a NON-experienced (or little experienced) AN doctor with a great manner vs a experienced AN doctor with a lousy manner, I'd suck it up and go with the experienced one.  Let's face it, during treatment, you're taking about dealing with that person probably fairly little compared to living with the consequenced and little or no experienced for the rest of your life.

So, to me, this decision is far too important to settle for not having both if you don't have to.  If you have the means to go halfway across the world to the best AN doctor with a great bedside manner with which you have a great rapport, then do it.  If you don't, then for me, experience trumps bedside manner in the end.

For example, I've seen my doctor probably 10 times or so (includes diagnosis, 2 hospital stays and follow-up visits after surgery).. but, I will live with the affects of his treatment (i.e. his experience) forever.  Luckily, I have the best of both worlds in that he's experienced with AN treatments AND he has a quiet confident and informative demeanor.  I would recommend him in a heartbeat on both counts.

Regards,
Brian

[knakag01]

Hi Chappi4u,

I'm so sorry to hear of your doctor troubles. As far as I'm concerned, feeling comfortable with your doctor and your treatment decision is #1.

The House Ear Institute in Southern CA does free consults if you send them your MRI scan. Here is the link if you'd like an opinion from experts:  http://www.houseearclinic.com/acousticneuromaconsultation.htm.

Best of luck!

Kim

[alicia]

Chappi4u - Brian said it quite well.  I will reiterate that you do not want a doctor to do a procedure that he does not want to do.  If he is not experienced with CK then go with GK if you stay with him.  Whether radiation or surgery, procedure experience trumps all.  Hang in there and keep asking questions, Alicia

[suboo73]

Chapi4u,

Hi there and welcome. 
I am so sorry, too for all your stress with finding a doctor to do CK...

I too am interested in CK but have not had treatment to date.
Since i live in Virginia, i know there is CK at Georgetown in DC.
Perhaps you would like to look into possible treatment there.
The doc's name is Dr. Gagnon.
One Forum member, aka. Goingbatty, went there for treatment.

I hope this helps.
Please keep us posted on your progress.

My thoughts and prayers are with you on this AN journey.
Sincerely,

Sue

[Chappi4u]

Thanks everyone for your support in helpful info. I spoke with patient care coordinator after my post today and she tells me the neurosurgeon will not be involved in my treatment. I guess it was his job to sell me on gamma knife as part of the politics involved at the university. The cyberknife was purchased on the condition that it not supplant the gamma knife where possible. She will meet with the radiation oncologist and members of the physics dept. tomorrow to ask them the question I posed: will I receive the same results from your folks that I would receive at a more experienced center? She will call me tomorrow with their answer. I will let you know the answer.

[Debbi]

Like everyone else has said, you must be comfortable with and confident in your surgeon.  It is also very worthwhile to consult with different doctors with different treatment protocols.  Most doctors tend to prefer the treatment they are most familiar with - which does not necessarily mean that this is the right treatment for you.   You may want to investigate Stanford further as I believe they are extremely experienced in cyber knife treatment of ANs.  In fact, Lorenzo (who stops by sometimes) flew from Ireland to Stanford for treatment!

Don't feel pressured into making a decision before you are ready. 

Debbi

[carter]

ask who will provide the follow up care?  in my case, I had CK.... I met with the first ck center - only the oncologist and decided to go forward.  later, she wanted me to see a neurosurgeon / neurologist.  i decided to go elsewhere as she did not seem capable of sticking with a decision.   

so you can change Dr's!

at the second CK facility, i met with oncologist and a neurosurgeon.  The oncologist said that he would be with me through the entire process.  i failed to ask enough questions as he did not see me through treatments and wanted me to see the neurosurgeon for any follow ups.

so if you decide to be treated by any one - just be sure that you know who will also do the follow up care.   you might end up with who you do not care for??

i have talked enough and observed enough to now question how much the oncologist actually does in the treatment vs how much is done by the nuclear staff?  do the other Dr's just look at the diagram that shows the radiation exposure to be beamed at each piece of the brain and decide to tweak or not?   

my Dr's certainly wee not available during treatment.


carter

[Chappi4u]

Radiation oncologist called me this morning. He told me there was a possibility (25% chance) my hearing could be further damaged with cyberknife. I guess he has to issue the standard disclaimer, but I feel confident that he knows what he is doing. Everyone tells me how smart he is and that he is very good. When we have talked everything he says is exactly what I have found with my research. I have to be honest, I am still have some concerns. But, I would have the same concerns if I were to go to stanford.

For better or worse, the neurosurgeon I met with last Thursday will be involved in the planning process.

Thank you Carter, I will ask that most important question!

Chappi

[Windfall]

I highly recommend that you do not allow the  neurosurgeon who tried to steer you away from CyberKnife to have anything to do with your CyberKnife treatment.

I am not a doc. I am an investor who has served on boards of directors with many doctors. As such, I have been privy to numerous conversations with docs that the average person would never hear. About five to 15 percent of docs are extremely dedicated and will do anything in their power to save you. The rest have a very strange way of looking at patients.

Your neurosurgeon has already tried to mislead you. Further, he has a vested interest in seeing that you have a less than satisfactory outcome. Fool me once, shame on you. Fool me twice, shame on me. You have a very serious medical issue which with proper treatment has a very good chance of being resolved successfully and with little or no additional loss of hearing. Your existing facility and Stanford are not your only options.

There are three CyberKnife locations in Connecticut:

Cyberknife Center at St. Francis
94 Woodland Street
Hartford, CT 06105  USA
Phone: (860) 714-4764

CyberKnife Center at Stamford Hospital
Tully Health Center
32 Strawberry Hill Court
Stamford, CT 06902  USA
Phone: (203) 276-2500

Hospital of Saint Raphael
1450 Chapel St.
New Haven, CT 06511-4405  USA
Phone: (203) 789-6639

Two in Boston:

Beth Israel Deaconess Medical Center (affiliated with Harvard Medical School)
330 Brookline Avenue
Boston, MA 02215  USA
Phone: (617) 667-3133

Boston Medical Center Radiation Oncology
Moakley Building
830 Harrison Avenue
Boston, MA 02118  USA
Phone: 877-930-2288

You don't need to travel thousands of miles and you don't need to trust your life and health to someone who has already proven him or herself untrustworthy. It's not an either or situation. There are other options and you would be very foolish not to examine them.

[HeadCase2]

Hello Chapi4u,
  Here's an experienced Cyberknife center in North Carolina, they have experience treating AN by Cyberknife.

UNC Skull Base Center- University of North Carolina, Chapel Hill.
  http://www.med.unc.edu/ent/clinical-programs/skull-base-center

  One of the things you may have heard already is that having a treatment team that is very experienced in treating AN is your best bet for the best outcome.
  Best of luck on your AN treatment.
Regards,
  Rob

[ppearl214]

Hi chappi and welcome.

For my 2 cents.... I had CK at Beth Israel in Boston. Now, at the time of my treatment (almost 4 years ago), they had only done a small handful of AN's (now, MUCH higher).  Like you, I wanted to make sure that it wasn't a "sell job" just to sell me their CK center.  Like you, I had conversed with Dr Medbery at great length about it (ie: experience of a CK center).  Dr. Medbery shared with me how all CK facilities train(ed) in OKC and how they also do quarterly meetings (come to find out, I'm now a Powerpoint Presentation at the meetings, courtesy of  Beth Israel!!).  As folks have noted here, I went in, armed with my info and quizzed the radio team beyond imagination.  I also disputed a few things with them that I had learned in my CK homework and came to an agreement with them.

Now, 4 yrs later..... I'm doing well.

By quizzing and confronting my CK team with my info, I was able to establish a comfort level with them... knowing that they weren't just "listening" but actually "heard" what I was saying.

As noted here, comfort level with any treating physician (whether its your PCP or radio onc or gyn or etc....) is of utmost priority.   Meet with teams that offer the treatment option you want ..... and you will know where your comfort level stands.  Don't "settle" on your decision... go with your overall gut, which also includes your comfort level. Folks in this thread have offered terrific insight....so you are arming yourself well. Don't be nervous to challenge a treating doc... trust me, I do it ALL the time!

Hang in there!
Phyl

[leapyrtwins]

Chappi -

call me naive, but I don't think any doctor tried to mislead you and I don't think any doctor was untrustworthy.

It's simply a matter of doctors recommending what they do - and what they do best.  Unless you find a doctor who treats ANs with both radiation and surgery, you'll often find that he/she has a preference for the procedure he/she personally does.

If you went to a Ford dealer, chances are the personnel there wouldn't tell you to go buy a Chevy.

That said, you definitely have to be comfortable with, and have confidence in, your doctor or team of doctors.  This is extremely important.

The other extremely important thing is to find a doctor who is very experienced in the treatment option you choose.

Once you incorporate these two factors, how many doctors/facilities you examine is totally up to you.

I saw only one neurotologist who does both radiation (GK) and surgery.  Was I foolish to only consult with one?  I think not   

I made the best choice for me and I had an excellent outcome.  You need to make the best choice for you.  As Phyl said, go with your gut.

Best,

Jan