Wednesday, July 30, 2008

Bill's pit MRI from Cedars was read as normal. Dr. F is leaning towards aldosteronism and is also having him continue to test for Cushing's. As soon as I got Bill's report from Dr. F, I wrote Dr. McC and asked if he'd look at the MRI for us. He is soooo nice. I had to send it twice as the post office in Houston seems to mess up most of what I send there! So I sent the second one last Wednesday.
I haven't posted anything on the boards because I think there are still people who sent their MRIs quite some time ago that are waiting for responses from Dr. McC. I was thinking I might get a fast response just because we were there a couple of months ago for J&J's surgerys and he knew that we suspected Bill might have Cushing's. I got a response yesterday afternoon which is MUCH faster than I expected. Here is my letter to him & his response:

Dear Dr. McCutcheon,I hate to take advantage of your generosity
but need to ask if you would be able to read my husband's pit MRI. He saw Dr.
Friedman about a month ago and had an MRI while in LA. It was read as normal.
His adrenal MRI did show an adenoma but I would like to know that all bases are
covered by having another opinion on his pit MRI.Thanks so much. You're such a
great surgeon to work with. You were a big help with the kids. Justin & Jess
seem to be doing okay. I guess it's just a matter of getting them weaned off the
hydro and see where everything falls.Judy Kennedy

Dear Ms. Kennedy,
Thanks for sending me your husband's
MRI, I have looked it over and it is interesting. There is a small area on
the left side of the gland that shows dark, and is consistently seen on dynamic
as well as conventional views. If there is an adrenal abnormality as well,
and if he shows high cortisols on the hormone workup, this is one where petrosal
sinus sampling and/or adrenal venous sampling would perhaps be helpful, to clear
up just where the source of trouble is. I have never yet seen myself an
intergenerational family linkage for Cushing's, although I know it has been
reported in the literature, but you might have the first such group if this pans
out! Thanks for your kind words about the surgery on your two
children. Let me know if I can help further,

I actually feel some better after getting his response. We're waiting for results on several tests and Bill's doing a midnight tonight. I'm so confused on his testing. Guess I would feel alot better if he started pumping out highs! Of course, we don't have many results at the moment. There's something that just tells me that he has Cushing's also.

I know there is another trip to LA in our future as Dr. F wants Bill to have an adrenal venous sampling. He says this could confirm aldosteronism and/or Cushing's. I'm not sure what he's thinking now as I know that Dr. McC sent a copy of his reply to Dr. F also. I'm kind of glad he did. I'd debated at what point in testing I would send the email to him. Now it's done.

We won't be going though until we're able to pay the credit card down enough that we can put another trip on it. I hate doing it that way but I don't see where we have a choice. I said a long time ago, when Justin was the only one I knew was sick, that I was willing to go into debt to get him well. Well it's come to pass - three times over!!


Robin said...

Hi, Judy. Wow. I'm suspecting there is going to be some interested folks wanting to know more as time goes on. I hope you can get answers for Bill soon. How are all of you doing?

mertoo said...

Hi Judy, I just wanted to say you have other options for those tests if you don't want to travel to LA again. Sowens had one done at Univ of Michigan and the other done someplace in Ohio, I believe.
BIG HUGS Superwoman!!!

judycolby said...

Thanks guys. It's kind of overwhelming. With the kids I just kept putting one foot in front of the other. With Bill it's different.
I think we'll probably just have the tests done in LA because we will have to travel no matter where we go. And I guess I want it done where I can (I thnk!) trust that it's done right. We'll see.
We're all hanging in there.