Author Topic: How do I talk to my docs about wanting treatment somewhere else?  (Read 3015 times)

phantagrae

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Hi,

I've read a lot of info about people checking out different doctors and/or hospitals, etc., and I'm wondering about the process of getting my records and info and how I talk to my local doctors about that.

I'm considering the Barrow Neurological Institute in Phoenix as a possible place to get treatment.  My sister lives in PHX and it's closer to Albuquerque, where my parents live, so it's an easily doable option.  It would be much easier on my parents to make the trip to PHX to help me than it would for them to travel here.

The facility here in Little Rock is a place that does a lot of radiation treatment of cancer patients, so they do GK and CK, but on their website there's essentially one paragraph about ANs and it doesn't say much about different treatments or docs who specialize in ANs or anything like that.

In talking to my PCP today (I had an appt for some routine bloodwork) about my diagnosis, he mentioned that in all his years of practice and thousands of patients, I'm only the 3rd case of AN that he's encountered, and with my mostly minor symptoms he wouldn't even have guessed I had an AN (I have no tinnitus, no real loss of hearing, not dizziness--just some facial numbness and minor hearing loss.)

The ENT doc I'm seeing does have experience with ANs, as does the neurosurgeon he also works with, and his recommendation is CK in order to try to preserve my hearing (I'm a professional orchestral musician).
Though I know he and the other docs he works with are experienced, I am thinking that it might be a good idea to check out the Barrow Institute, since it seems like they have docs who are very experienced with AN.

I guess I'm a little worried about what to say, how to approach the subject of looking into Barrow.  It's not exactly a 2nd opinion, though I guess it is technically.  It's not as if I doubt their diagnosis or the ENT's initial suggestion of CK, I just want to get the most experienced doc I can.
I don't want to insult anyone or make them think I doubt their skills.
Numbness on right side of face beginning some time in 2012 through early 2013
MRI 4/15/13
20mm x 19mm x 16mm intra and extra canalicular AN on Right Side.  ("Largely extracanalicular")
FSR treatment beginning on July 22, 2013--going for 30 treatments

Jim Scott

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Re: How do I talk to my docs about wanting treatment somewhere else?
« Reply #1 on: May 02, 2013, 02:32:34 pm »
Phanta ~

An acoustic neuroma is a fairly serious issue and choosing a doctor to treat it (surgery or radiation) is  a crucial decision for the patient (you).  A poor outcome to whatever treatment you chose could be life-altering in negative ways.  That being the reality, you have a perfect right to look out for your best interests in this situation.  An ethical doctor will recognize that and not look askance at a patient seeking other medical opinions and options. 

We always urge AN patients to be proactive and not simply go along with whatever a doctor tells them.  This doesn't mean you have to argue or be rude, simply state that you need to seek out every option and facility that might best serve your needs in treating your AN.  A doctor/facility that is confident of their ability will not be offended by that and if they are, you wouldn't want to use them, anyway. 

Again, do what is best for you.  In seeking the best care, it is not your responsibility to stroke anyone's ego but to do what 'works' for your situation.  You can certainly do so in a civil and respectful manner but don't allow doctors 'feelings' to dictate your decisions.

I wish you success and hope you can find the very best treatment available.  Please keep us informed.  Thanks.

Jim
4.5 cm AN diagnosed 5/06.  Retrosigmoid surgery 6/06.  Follow-up FSR completed 10/06.  Tumor shrinkage & necrosis noted on last MRI.  Life is good. 

Life is not the way it's supposed to be. It's the way it is.  The way we cope with it is what makes the difference.

arizonajack

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Re: How do I talk to my docs about wanting treatment somewhere else?
« Reply #2 on: May 02, 2013, 03:41:25 pm »

I have no tinnitus, no real loss of hearing, not dizziness--just some facial numbness and minor hearing loss.


Good reason to move on it with some reasonable amount of urgency.


Though I know he and the other docs he works with are experienced, I am thinking that it might be a good idea to check out the Barrow Institute, since it seems like they have docs who are very experienced with AN.


That's where I had my Gamma Knife.

I guess I'm a little worried about what to say, how to approach the subject of looking into Barrow.  It's not exactly a 2nd opinion, though I guess it is technically.  It's not as if I doubt their diagnosis or the ENT's initial suggestion of CK, I just want to get the most experienced doc I can.
I don't want to insult anyone or make them think I doubt their skills.

I don't think doctors are that sensitive.

I think if you keep your explanation to the convenience of your sister and parents, family support and all that, it won't hurt anybody's feelings.

3/15/18 12mm x 6mm x5mm
9/21/16 12mm x 7mm x 5mm
3/23/15 12mm x 5.5mm x 4mm
3/13/14 12mm x 6mm x 4mm
8/1/13 14mm x 5mm x 4mm (Expected)
1/22/13 12mm x 3mm (Gamma Knife)
10/10/12 11mm x 4mm x 5mm
4/4/12 9mm x 4mm x 3mm (Diagnosis)

My story at: http://www.anausa.org/smf/index.php?topic=18287.0

alabamajane

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Re: How do I talk to my docs about wanting treatment somewhere else?
« Reply #3 on: May 02, 2013, 07:15:47 pm »
I totally agree here with Jim and Arizonajack,, in fact ,, don't really think you have to tell Dr anything if you are not comfortable doing so,,,,,,,, I just called office and asked the nurse to send my records to the other Dr and never went back to see original Dr that I had been seeing,, I knew I was not going to go into surgery with him anyway so why tell him,,,you may not want to go this route ,, just saying how I handled my situation ,,, it is imperative that you are most comfortable with your  treatment choice as YOU have to live with all the results... Best of luck to you and let us know how you are,, Jane
translab Oct 27, 2011
facial nerve graft Oct 31,2011, eyelid weight removed Oct 2013, eye closes well

BAHA surgery Oct. 2014, activated Dec. 26

Nannybee

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Re: How do I talk to my docs about wanting treatment somewhere else?
« Reply #4 on: June 14, 2013, 08:28:52 pm »
Don't even worry yourself about it. I work in a medical office and the providers don't even know that the records are being sent. It's your right as a patient to have copies of all your testing, office visit notes, etc. I personally keep a binder with copies of every office visit note, MRI report, audiology exams, etc. and take it with me to every appointment. That way I have all my records and can provide them to who ever I want.
AN 18x19 mm
3 meningiomas
NF2
AN treated with SRS April 2013
MRI Feb 2016 AN shrunk to 17 x 8 mm :)
Constant tinnitus in AN ear
Severe hearing loss AN ear

 


anything
anything