Update to afraid of surgery

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Quick recap, I had achalasia and dysphagia for many years. Finally diagnosed with an esophageal Leiomyoma which is a nonmalignant tumor.  My symptoms are tolerable but my Gastroenterologist was pushing me to surgery which was scheduled.  The surgeon wanted my GI to do another endoscopy with deep needle biopsy which again I was reluctant to do but wanted the endoscopy to see if the tumor has grown.

My GI told me the tumor has not changed changed since the last one in 2014.

After the biopsy I thought I would die.  I had severe painful spasms every minute (I timed them) even two a minute and cried and cried. I called the on-call Dr who said it was probably acid and to take antacids which really didn't help. I slept the whole next day.  The spasms slowly subsided over the next few days.

GI called me with results of the biopsy and said it was "nonspecific" and that since the tumor hasn't changed I should discuss with surgeon holding off.  I cancelled my surgery but did not speak to the surgeon.

I was able to get my Cytology report on line since hospital has an ap for patients to keep track of everything.  THE CYTOLOGY REPORT SAID NOT ENOUGH MATERIAL TO TEST.  So my GI lied to me and that explains why I was in such pain.  He tried to get the biopsy the surgeon wanted.

So now I have more heartburn then ever.  Trying Prilosec which doesn't help much. Tums do help.

Anyway I am taking a break although I still have some syptoms but can live with them for now. What scares me the most is waking up feeling like I will choke so sleep with extra pillows. Stopped eating late at night.

When I am ready I will change Gastroenterolgosits and get another opinion. Thoughts?

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  • Posted

    Hi you were very clever for asking the cytologist your report i'd do the same if i were you. However why not show the report to the surgeon who took your biopsy and demand for an explanation. Thing is since ghe tissue sample is not enough he might repeat the entire procedure. It's your bidy and you have the right to know.good luck and take care.
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  • Posted

    I do not think that you can continue for long with the risk of reflux aspirating towards your lungs at night without a specialist looking at you. The endoscopy has apparently provoked a traumatic reaction with your nerve endings, and the tumour may, or may not, be contributing to your problems. The reaction 'non specific' may or may not be consistent with 'insufficient material...'; the wording normally has to be interpreted by medical staff. So the long and short of it is that you need to find a surgeon you have confidence in, and try and have the tumour investigated, perhaps with scans, to diagnose what the risks are .
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  • Posted

    In response to your choking at night: I have found that if i don't eat close to bedtime and if I drain my esophagus before bed (I lean over and can bring up stuff, mostly water but some food as well), I don't have that problem.  Sorry for the gross description.  But that's what many of us with Achalasia do.  If you have a blockage with the tumor, that could be why stuff is coming up at night.  This applies if what's coming up is not acidic.  If it is acidic, I would definitely bring that information to a specialist and make sure to take measures to get that under control due to the aspiration risk and general damage to the esophagus.  
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  • Posted

    Definitely time to get another opinion.  Take your health matters in your own hands and DON'T STOP until you get answers and something towards resolution!  For 3 years I had to fight for every test, every 2nd opinion and finally found a doctor that would listen who sent me to the GI specialist at the University of Iowa hospitals and clinics.  It's taken a couple years and a few more tests and surgeries to get some answers but I feel that I'm on the right track... at least to have a physician that BELIEVES that the pain isn't all in my head!!!  I now have type III Achalasia and have few options....  

    Please research everything you can and PUSH PUSH PUSH until the medical professionals give you some resolutions!

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