An answer--Finally!

[Guest guest]

Hi all--

You all haven't heard very much from me in the past couple of weeks, but

there has been a good reason for this. On a dare, I finally went to seek out

yet another opinion from a surgeon reasonably close by in Pennsylvania. I

say on a dare, because most of you know how burned out I've become with all

the surgeries, hospitalizations, infections, etc--and how resistant I've been

to going very far from home to try to find a resolution to my never ending

situation. Well, a friend had RNY with this surgeon last September--actually

the same day that I wound up in the hospital with my latest bout with

sepsis--and she has been bugging me to go to see him for another opinion ever

since. She got my mom on the bandwagon, so I couldn't fight them any longer.

Since it was only 45 min from home and a $12 co-pay, I went. He wanted me

to see his nutritionist a couple of times and then come back--I was certain

this was his way of dumping me. The nutritionist was mildly helpful, she

offered a few suggestions, but admitted that my problems were so physical

that I most likely needed a surgical solution. She thought that I had as

much dietary knowledge as I really needed.

Well, the second visit to the surgeon came and I was certain he would give me

the old " your doc is doing all the right things, there is nothing more I can

do to help you " song, and send me packing. He spent 40 min listening to me

repeat my entire saga a second time while studying my records. He listened

to every symptom as I described it and asked very careful questions. The

only exam I had was his asking me to point to where it hurt the most. At the

end of the 40 min, he asked if I would agree to a couple of tests: an upper

GI and endoscopy. Both were scheduled for that week with a follow-up

appointment with the doc the following Monday.

I dreaded the following Monday as I was positive he would tell me that all

the tests were normal and that I would have to live with this. Wrong again!

Although there was no obvious obstruction at this time, he feels that there

must be a stenosis somewhere by the symptoms I describe. But the kicker was

in the scoping: he told us that there is every reason to believe that my

bypass was constructed all wrong. In his opinion, the geography of my bypass

is incorrect. He said that my pouch lies horizontally instead of vertically,

which is the norm for those who are vbg converts. I told him that another

surgeon with whom I consulted remarked after a scoping that HE thought my vbg

pouch lay side to side instead of up and down, thereby eliminating the force

of gravity which is so essential in the vbg functioning correctly. When I

mentioned this, his whole face lit up like a Christmas tree and he said:

" this may have been your problem all along, all the way back to your vbg! "

So, what's next? Well, it seems that this guy has studied with Brolin

in NJ and is contacting him for input. He wants me to go down to see him

with my test results. He wants some input from Dr Brolin about how to fix

things, but he believes that the entire bypass will have to be taken apart

and re-done. But he says that it absolutely cannot be done without

re-feeding, as I'm so malnourished, and the surgery would be so big, that I

wouldn't make it off the table. The whole process will take 2 major open

surgeries to fix me. The first surgery will be an exploratory and the

placement of a feeding tube. I will have to undergo feedings for 4 to 6

months to gain enough nutrition to withstand the revision surgery. He said

that he's fixed some complications and done conversions, and he's done

original bypasses, but he's never seen a case as bad as mine. My pouch was

made bigger than it should have been and the anastomosis was made larger than

normal, so he would have expected that I would be complaining about GAINING

my weight back instead of the continuous losing. Funny how he could tell

that I was malnourished without even taking a blood test and my own docs all

say I am fine.

Oh well, keep your fingers crossed and the prayers coming. I'm hoping that

Dr Brolin will have some good ideas and that we can at least start the

re-feeding process soon. It's been a long haul and has really left me both

physically and emotionally spent. It's so hard to find out that the doctors

I trusted could have botched things so badly--and wouldn't ask anyone else

for help. At least now there really IS some hope. Hope you all had a good

holiday!

--El