CAre for PA in LA

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Sorry I did not see your location. I would either try to find the Kaiser expert in PA in the area and they should have at least one.If do appeal to go to UCLA.CE Grim MDOn Jul 7, 2012, at 10:59 PM, msmith_1928 wrote: Oh goodness, I wish you had different insurance and could go to UCLA Medical Center, where I had my tumor tested and removed. What you've told us so far does not make me feel especially confident about the care you are receiving. How old are you? There is a school of thought that if you are under 40 and have a clearly visible tumor, then it's possible to skip AVS. Personally I would never consider skipping it. I had AVS not once, but twice, and while it's true that they do make you sign the standard "people die during this procedure" waiver, I never once felt like I was taking a huge risk. Certainly not the risk I would have been taking by having surgery without thorough testing first! As for the surgeon - personally I wouldn't consider anybody but an endocrine surgeon for this. Just my opinion and no basis for this other than the fact that endocrine surgeons will do adrenalectomies for numerous reason and are likely to be well experienced in this, whereas a general surgeon would not. If it's at all possible to appeal to Kaiser and go out of the HMO system for your care - after all, you have what conventional wisdom calls a "rare" disease (although many of us around here don't believe it to be so rare!) - and you would like some Los Angeles area recommendations for doctors well trained in PA, let me know and I can give you some contacts. -msmith1928 Left laparoscopic adrenalectomy 10/13/11 > > I have a 2.6cm tumor on my right adrenal. My potassium was very low at around 3.4 for many years and my blood pressure over the last couple years kept going up and up. I live in Los Angeles area and have Kaiser Insurance. After doctor found tumor they started treating me with Inspra and blood pressure medication. My Potassium levels and blood pressure is in the normal range with medication. The doctor had not checked my renin/aldosterone levels before treating with me Inspra. I starting seeing an endocrinologist to advise about surgery. They said that AVS was very unsafe and that people die on the table all of the time with the procedure. So, they freaked me out into not wanting to consider that test. They ended up tapering me of Inspra for about a week and did the Renin/Aldosterone test. I was certain that was not enough time off Inspra to get an accurate reading but apparently it was. The doctor called me to advise my aldosterone was way higher than normal and that she was referring me to a surgeon. The surgeon is just a general surgeon and does not specialize in Adrenelcomy. So, I was wondering if this was ok to have a general surgeon do the surgery.... and also is it ok to remove one of the adrenal glands without testing the other one through AVS to make sure it is working properly? > > > This is my first time posting to this group. I am new to all of this and have been really going at this alone. Thanks for any help. > > Amber Hudson >

[Guest guest]

Im not sure Kaiser would take an appeal but it is a good idea especially of they

do not have a specialist in PA. I could try it.

> > >

> > > I have a 2.6cm tumor on my right adrenal. My potassium was very

> > low at around 3.4 for many years and my blood pressure over the last

> > couple years kept going up and up. I live in Los Angeles area and

> > have Kaiser Insurance. After doctor found tumor they started

> > treating me with Inspra and blood pressure medication. My Potassium

> > levels and blood pressure is in the normal range with medication.

> > The doctor had not checked my renin/aldosterone levels before

> > treating with me Inspra. I starting seeing an endocrinologist to

> > advise about surgery. They said that AVS was very unsafe and that

> > people die on the table all of the time with the procedure. So, they

> > freaked me out into not wanting to consider that test. They ended up

> > tapering me of Inspra for about a week and did the Renin/Aldosterone

> > test. I was certain that was not enough time off Inspra to get an

> > accurate reading but apparently it was. The doctor called me to

> > advise my aldosterone was way higher than normal and that she was

> > referring me to a surgeon. The surgeon is just a general surgeon and

> > does not specialize in Adrenelcomy. So, I was wondering if this was

> > ok to have a general surgeon do the surgery.... and also is it ok to

> > remove one of the adrenal glands without testing the other one

> > through AVS to make sure it is working properly?

> > >

> > >

> > > This is my first time posting to this group. I am new to all of

> > this and have been really going at this alone. Thanks for any help.

> > >

> > > Amber Hudson

> > >

> >

> >

>