[2010-10-17] Email research - Dr. W.

Hi All,

I wanted to pass along some information / insights from dr.W. who is Karen's friend and an orthopedic surgeon. Myxomas are not his specialty obviously, but he offered some insights / information. I thought I'd summarize what I remember:

* he confirmed that myxomas are really rare. he was quite surprised that it was found
* he suggested as the next step is to talk to the surgeon (he says he doesn't know dr. R.) and to not be afraid to ask questions like:

a) how many surgeries like these have you done in the past?
b) how comfortable do you feel with this type of a surgery?
c) who else do you know in BC that has done these types of surgeries?
d) he said that surgeons have enough business to do, so won't be insulted by these kinds of questions

* he said that if you dad (we) don't feel comfortable with the surgeon or his experience, you (we) don't have to feel pressured to proceed with anything and can get referred to another surgeon
* he doesn't think that the recommendations to go forward with surgery are from an urgent place (like...something horrible will happen if surgery doesn't happen immediately.) He says that the mass didn't appear there overnight and that dad has likely been living with it for some time. He said that of course risks exist with it causing problems, but that from the medical field, it becomes more of a medical -legal issue. As in, if they identify a mass and don't make recommendations to proceed and something happens, a family can then sue.
* he also said that the the size of dad's myxoma is a decently big size and that maybe the recommendation for operation came from the assessment that there is "no reason to wait" as in, it won't get better, so why wait?
* if your dad decided not have the operation right now, likely the next steps would be to monitor the myxoma with a follow up echocardiogram in 3 months to see if / how much it grows
* He stressed not to feel pushed into doing anything or do it out of sense of urgency - he said that if someone needs urgent heart surgery, they would have been admitted to the hospital and had a surgery that day.
* with regards to getting in touch with Dr. R., he suggested maybe giving him a day, and then calling his office. he suggested not emailing - he said that unless a patient-doctor relationship exists, doctors won't typically even read emails. He said that calling the office would be better and to indicate that we're feeling anxious based on the results and would like to make an appointment with him and to ask when to do the angiogram

I will still call vgh tomorrow to find out generally how long the wait for angiograms is. I think it's a good idea to go talk to Dr. S. and then to follow up with Dr. R. on Tuesday if no angiogram call comes.

That's it from me for tonight - hope this was helpful - love you all.