Why are doctors so confusing

[davjack]

Just went for my referral for my 2nd MRI. I told my ENT that I saw Dr. Antonelli, who suggested watch and wait, which I gladly agreed with. The doctor says, "I know Antonelli" in a way that sort of led me to believe he's not crazy about him. So he's telling me you don't have to go all the way to Gainesville. You can go to U. of Miami and see Dr. Telishi...he's excellent. Well, if he is so freakin' excellent, why didn't he refer me to him in the first place?? Why did he waste my time sending me to that crazy in Hollywood (Florida). I could tell he wasn't real happy with the watch and wait option. I told him I wanted to go for the radiation, if the time came. He says, "you don't want to wait till your 65 to have to deal with this...to have surgery". I'm thinking, I'm only 48! I don't think I'll have to wait that long to know what I'm going to do. And did he not hear me? I said I was going for the radiation! I feel like only 2 doctors have taken my choice seriously, my eye doctor and Antonelli. People do get radiation right? It's usually successful, right? Antonelli said it was in the 90 something % rate. Did he lie?

Why do they try to confuse you? Why don't they listen?   
DJ

[lori67]

Hi DJ.

I don't know why doctors are so confusing.  I think some of them major in it in medical school!   

It is so hard to make a decision or to feel good about the one you've made when you have another doctor second guessing you.  The bottom line is - who are you more comfortable with and what treatment do you feel is right for you?  I'm sure you did your homework before deciding radiation was a good option for you and if one doctor doesn't agree with you, he should be able to explain why he feels that way.

I don't know any of the stats on radiation, as I had surgery, but I know there is plenty of info on the forum regarding the pros and cons.  Check them out if you haven't already.  I also remember hearing the name Antonelli before, so maybe someone who knows about him will chime in here.

You need to be able to make your own decision regarding your own head without feeling pressured.

Good luck!  And if you figure out a way to make them all listen, make sure you let the rest of us in on your secret! 
Lori

[Jim Scott]

DJ ~

I'm sorry to learn about your frustration with your doctors.  Unfortunately, this is not uncommon.  The crux of the problem is that some (not all) doctors often have entrenched biases and although they may not consciously realize it, they have a distinct preference for one form of treatment over another.   As you noted, your ENT made it obvious that he didn't agree with Doctor Antonelli's advice to observe the AN and went so far as to subtly disparage his opinion.  The ENT recommending yet another doctor was his way of sending you 'doctor shopping' until you find a doctor that agrees with your ENT who seems to be fixiated on you having surgery.  His basically ignoring your desire for radiation is borderline obnoxious, in my never-to-be-humble opinion.  I would find another doctor and definitely seek out a radiation oncologist that has experience with AN patients.  The bottom line is that your choice of treatment should be respected unless there is a solid medical reason to object to it i.e. if you had a huge AN that you insisted you wanted to 'watch and wait' for another 6 months, when doing so could cause you severe symptoms and possibly death if it impacted the brainstem to a large degree. That is not the case, here.

Dr. Antoneli didn't lie to you.  Radiation treatment for ANs is very successful, although never guaranteed.  If you are a viable candidate for radiation and prefer that procedure, then by all means you should have it, whether an ENT agrees with you or not.  I suggest you drop your ENT and seek a radiation oncologist....but that's just me.    

Jim

[ppearl214]

Hey DJ

Oh..... I could have a BALL with your question of "why don't they listen?".... so, make yourself a bowl of buttered popcorn (we've been known to have it around here...)..... prop your feet, sit back and relax, pour your favorite beverage... and I'll share, solely based on my experience (plus, I had chocolate today).

Yes, Radiation is a very viable and successful treatment option for AN's.  Success rates (depending on which mode of radiation done) is well over 90%.  There are many of us that are walking testiments to being "successful" (ie: me, Mark, Sue, Steve Gerrard, Jim Scott -- surgical and radio, how's that for double success rate!, etc.... too many for me to count).  So, yes.... radiation is certainly a viable treatment option and much info here on the forums to find, esp. in the "Radiation/Radiosurgery" forum.  Ask away.... we will answer as best as we can.

Why do they like to confuse us?  Ok, there is where my fun begins. 

Now, keep in mind this.... as many here know about me, I have too many dang ails to keep track... from the top of my head down to my legs and too many in between.  For every doctor that I visit, at this point, I own each and every one of their homes (incl. summer cottages).  I own every drug manufacturer for each medication I have been on and can no longer take due to ill side affects (I have a tendency to be "sensitive" to meds).  For every office visit I have had, they keep a tooth brush in the office with my name on it as I practically live in their offices.

Why do they like to confuse us?  Because they like to have folks like me keep showing up, feeling like ugh!, wasting my time and hard earned money to keep their practices afloat.  They like to confuse us in the hopes that we believe that their word is final, that they know all there is to know.. and they need a new car since the lease car needs to be turned in.

Now, don't take this as me being bitter (trust me, you certainly haven't seen that... only my husband has).... but I have learned for all the time and energy I have spent in dr's offices one thing... they are not "gawds". They are human and err as such.  They do not know all.

I try to share here and in all my communications with AN'ers (and other brain tumor patients that I speak)... do your homework. Leave no stone unturned. Get as many professional opinions as you can...speak to folks that walk our shoes.....   to me, it's your health.... you do what it entails to keep you as healthy as possible.

so, off my soapbox I go..... and I think you know that I'm cheering you on.  Dr. Antonelli has been widely respected (I've heard of him from time to time around here) and in the long run, go with your gut. I'm just about the same age as you... prolly in worse health than  you... and as you can see (other than me being in one of them moods today), I'm doing just fine!

Hang in there. The decision-making process can be the worst part of the AN journey but once done, the weight will be off your shoulders.

Phyl

*sits down on sofa, grabs a bowl of popcorn and waits for others to respond*

[crivers]

DJ, I agree with the others.

I happen to be open to listening to all types of approaches.

1. The herbalist can cure me with a natural concoction of herbs - known in different forms, Essiac being one of them, there are others that add a few different herbs to the mix.

2. The Chinese medicine doc will use acupuncture / pressure / and Chinese herbs (other eastern medicine philosophies will approach it similarly)

3. My Neurosurgeon will get it out by surgery (like I said, that is all they seem to do here in AUS)

4. The Naturopath will help you with vitamins and minerals and a change in diet and exposure to toxins.

5. I assume when I get to the CyberKnife team, they will be certain that it is the way to go... (I think I tend to agree with them, just on my 7 months research)

So, like Phyl says (and she certainly knows more than me) - look at it all, do what you feel is right - and per my other post, please share any information you find on the exact point in time to stop watching and get treatment (I know it doesn't exist, but wishful thinking does...).

Cheers,
Cayce

[Sue]

Phyl, you absolutely Rawk, as you put it!!   After my father-in-law died, my mother-in-law, after a short period of time, was not able to stay in her home any longer.  Her sons talked to her, but she was pretty certain she could stay in her home.  Well, we talked to her some more.  Nope.  Not gonna do it, she said.  So, she finally went to her doctor because she was having so much difficulty with her health, and the doctor said...."Ethel, you need to be in an assisted living situation.".  She practically moved that day, because to her it was "God, Jesus, Doctor" in order of importance.  Now, it's nice she listened to him, and Doctors are a wonderful thing, BUT, they are not Deities.  They are human, they run a business, they like doing what they are doing and prefer to keep you as their patient if at all possible, and Jim is so right in that they have their preferences, because, it's only human!!

I learned this the hard way too....it's YOUR body, YOUR health, YOUR money, YOUR insurance, YOUR peace of mind, YOUR life.  Nobody else cares as much about you as you.  I asked my doctor....if I was your MOTHER, is this what you would recommend for her?   Don't know if that works or not, but it kind of helped me.

Anyway, hang in there.

Sue in Vancouver, USA

[ppearl214]

thanks Cayce... I certainly don't know much and only play a Dr on tv (nope, not THAT Dr. Phil! ... ok, jk) but only share for what I have experienced...and for what I have learned by listening to others in the same shoes

Sue, YOU rawk! I have recently been in the same shoes as you with your MiL and it's one of the most challenging things I have ever done... in the hopes our loved ones also don't take the word as "final".  We also searched out answers to help make the best, well-informed decision that we (as a family) could.

And to me... that is the bottom line.... to be the best, well-informed patient we can be so we can make the best, well-informed decision we can for our own situations.

Thus, DJ.... you are doing your homework... you are asking.... you are seeking out medical opinions and listening from experiences here.  It can be daunting, but, in the long run, based on all info you will acquire... your gut will help drive you to what will be best for you.

Ok, who ate all my popcorn?

Phyl

[rupert]

  DJ,

      Just to add to what others have said.   I wouldn't get hung up on the referral thing.  Once you have been diagnosed,    you can refer yourself to any doctor.   They just want to make sure your not wasting their time if you don't belong there.    So,  do your homework,  pick out some doctors you would like opinions from and where it says on the form " who referred you"  just say I referred myself.
                                                                                             Bryan

[davjack]

You guys all rawk!!!  You are right about everything I know. You've made me feel so much better once again! I'll let you all know how my next MRI comes out next month.
***shoving popcorn in my face***
DJ

[leapyrtwins]

I'm a huge believer in "going with your gut".  That's what I did and I'm very happy with my outcome.

But I also want to point out that Dr. Antonelli has a very good reputation.

For all you "oldies" - isn't he the doc who did Adrian's surgery (as in Sam & Adrian??)

Jan

[ppearl214]

For all you "oldies" - isn't he the doc who did Adrian's surgery (as in Sam & Adrian??)

Hey Jan, their profile shows that Adrian had surgery at Tampa General, Tampa, FL. Phyl

[leapyrtwins]

Thanks for checking "oldie", Phyl.

I must have confused Adrian with someone else 

I've heard Dr. Antonelli's name tossed around the Forum in the past - and in a GOOD way, I might add.

Jan

[lawmama]

Dr. Antonelli was 1/2 of my microsurgery team, along with Dr. Lewis.  I was VERY happy with the outcome of my AN removal.  Dr. Antonelli did mention that if I had different circumstances he might have suggested radiation.  I had very severe vertigo pre-op that made me a poor candidate for radiation.

I do understand your frustration.  There never seems to be a "right" answer and everyone seems to have a different opinion.  I can't tell you who to trust, but all I can say is that I had a very good experience with Dr. Antonelli.

Lyn

[ppearl214]

Thanks for checking "oldie", Phyl.

I must have confused Adrian with someone else 

I've heard Dr. Antonelli's name tossed around the Forum in the past - and in a GOOD way, I might add.

Jan

Yep, thinking I'm older than you!

I was going to note Lyn but just saw her post... also wanted to note Omaschwannoma (the patient formerly known as Arushi/Karen), I believe also used Antonelli... and as you note... nothing but good about him and Shands Hosp.

Phyl

[Larry]

Ok, some good comment on why docs are confusing but I'll be blunt (having a bad day) and come straight out with it.

Too many doctors (not all) have egos bigger than the side of a barn but the real reason is $$$$$$$$$$$$$$$$$$$$$$$$$$$$$$$$$$$$$$$$$$$$$$$$

Surgeons who "bag" radiation are usually wanting to operate so they can buy their next ferrari. There is no reason to bag either option or wait and watch if the situation arises so the main motive is  dlleros.

Please note there are those that are interested in healing and not the $ as a priority - its just finding them!

Laz