I have been diagnosed with Nutcracker Esophagus in all three zones of my throat, and am looking for
treatment/cure options.
I am 33 y/o female currently only taking a calcium channel blocker. I know the specific date I
started feeling horrible when I ate/drank (May 19, 2003). I have since lost alot of weight and
muscle mass. I have been tested for pregnancy, many blood tests, two upper GIs (diagnosed with a
small sliding hiatal hernia, and gastral reflux disease), they gave me protonix, aciphex, and then
nexium but nothing took the pain and overall horrid feelings away I had even when drinking water. I
felt better when I laid down or stood up walking around. I felt especially good in the morning when
I hadn't eaten...so I just wouldn't eat, until I absolutely had to.
Then I had an upper endoscopy done (negative results, just minor irritation), a 24 ph test with a
tube up my nose (that showed I wasn't crazy about the lying down part feeling good), and I had a
manometery test done in the specialists office that revealed my rare disorder. He said the results
went off the paper on the top line, on the second line they went up to the top line. And he had
never seen anyone with spasms in the upper zone of my esophagus, nor someone who could withstand the
strength of the spasms I was having.
So, now I now the pain won't kill me. That is minimul relief. He said that we could do a lower
laproscopic surgery to cut the lower esophageal muscles (and while he was at it fix the hernia) and
that only works for 30% of the patients, then wait a few months and go in through my ribs and cut
the rest of the muscles.
He said something very disturbing to me. He said that he was going to essentially "break something
in my body that was working (too well) but it was working...and that I could face significant
dysphasia 30 years down the road"
I posed the question of botox injections twice in the last week, but he is a surgeon...and I'm not
sure if he would either entertain the idea, or if I'm far to gone for it to be effective.
Any thoughts would be appreciated, vr Sugar Plum Princess, who is ticked off at her Nutcracker