"Suffering the Slings and Arrows of Outrageous Fortune"


As usual, the worry in the lead up to Em’s endoscopy was greater than necessary and we had a blessedly uneventful morning. Although, there were some real concerns that have to be addressed with EDS and I am glad I spent time planning for them, I am just glad nothing came of them.

Again, the staff at Riley was excellent and, because they made good choices, the procedure went smoothly. She was delivered back to the post op room within the hour, the procedure took maybe 30 minutes. The anesthesiologist popped in to tell us how things went and then Dr. Croffie came by with pictures. Basically, everything looked normal – no smoking guns – no obvious EoE, no GERD, no ulcers, no structural issues.

So, now we wait on the biopsy results to see if anything shows up there. If so, we can address it, if not, we follow up and see what is next. Personally, I think we are getting closer to saying that it is just mast cell and gastroparesis, but what do I know?

Here are some of the things that went right yesterday and made the process smoother:

  • She got to wear her hard collar through the whole procedure – both the anesthesiologist and Dr. Croffie were fine with it and I think it helped. Unfortunately, her neck is still sore but I think it could have been worse without the collar. (This feels like a huge victory because when she had her appendix out, we were told she could have it on but the anesthesiologist made her take off it once she was back in the OR. Which was not ok and has bugged us ever since.)
  • They usually do the anesthesia with the patient lying on their back, then reposition the person on their left side for the scope once they are out. The anesthesiologist initially said they couldn’t let her position herself because the anesthesia had to be done while on her back and they would just have to be extra careful moving Em. She did ask about the problem joints and we felt she understood our concerns. However, Em said that they decided just to leave her on her back and not risk rolling her over. I think that was a very good choice. She is sore and spent time afterwards putting herself back together but I don’t think she had a major dislocation so that seems like a good thing. (I am suspecting that they did move her to take her to the recovery room and that may be why she is so sore.)
  • She was able to hydrated up to the last minute – she drank a couple bottles of water and half a vitamin water before 6:30, so that was a beneficial thing. She was also allowed to take her morning meds, so she didn’t miss a dose.
  • I got her some Sea Bands and they helped control the nausea, both motion sickness on the way there and the post op nausea. She still felt queasy but her nausea started diminishing once we put the Sea Bands on her afterwards. I used them when I had severe morning sickness when I was pregnant, the kids have used them through the years for motion sickness, but I had sort of forgotten about them for Em’s ongoing nausea. She will keep a pair with her now and use them whenever she gets nauseated.
  • The doctors listened to my concerns, clearly. Because they listened, the morning went smoothly – I felt better about proceeding and they had the information that allowed them to make good decisions. Communication is important.

All in all, it went smoothly – her throat wasn’t even sore afterwards. Her chest is – she was complaining about her ribs hurting as soon as she was awake enough to complain. We are assuming it is from where they pumped air in during the scope or maybe when they moved her afterwards. She also started complaining about feeling like she had heartburn last night which is to be expected. She is very tired and the nausea is lingering, but she was nauseated pretty much constantly before the procedure, so that is no surprise. Otherwise, she feels pretty good.

So, we are glad to have this over and done with – it wasn’t horrible but we are fortunate to have avoided the worst of what could have happened.


Comments on: "Endoscopy" (4)

  1. That is GREAT news! I’m so glad her doctors listened! I remember my doctor just left my soft cervical collar on the floor (after promising to use it for my colonoscopy after the endoscopy). Good grief…. It’s GREAT that she does well with the Sea Bands! It doesn’t get much easier than that! 😉

    • They did move Em to the bed while she was still out and I think that is part of why she is so sore and had to put everything back together when she woke up. I am SO glad she had her collar on for that alone. I was worried about it after her not having one for her appendectomy, but it was really a non issue – the anesthesiologist said it was fine with her, if it was ok with Dr. Croffie, and he said it was fine with him if it was ok with her. Kind of makes me mad, thinking back to her other surgery. If they could do a scope with the collar on, I see no earthly reason that they couldn’t have done her appendectomy with it on. But, all’s well that ends well…

      The Sea Bands are awesome – they (maybe literally) saved my life when I was pregnant. A pretty simple solution to chronic nausea – we will always take simple!

  2. Thank you for sharing your story ❤ I have Ehlers Danlos Syndrome (hypermobility) diagnosed 2 years ago at 27 yrs old , explaining a life time of medical oddities. I had a scope done two years ago and multiple barium swallows to find out the reason behind my neat fatal choking episodes was a shiatzki ring (structure) in my esophagus . I am not interested in my esophagus being stretched so I make due with a double dose of Protonix . I'm being treated for late stage Lyme Disease (yay for living in New England) so the choking episodes are coming back which isn't fun. EDS is such a complicated and infuriating disorder, I'm so sorry she has to go through this , but by sharing your (her) story you help the EDS community tremendously by getting the word out. Many positive thoughts your way .

    ~ Robin

    • Thanks Robin,
      EDS is incredibly frustrating and if it isn’t one thing, it’s another, isn’t it? I was worried that there might be something structural wrong and they would say she needed her esophagus stretched, but, I guess that wasn’t the case and now we just get to wait to find out if anything comes from the scope!

      Thanks for the positive thoughts and kind words!

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