For 4 to 6 weeks after the procedure things were pretty good not fabulous but not horrible either. I was able to drink water and eat small meals i did not have the constant urge to clear my throat or the sensation of having something stuck in my lower throat, I was no regurgitating, then around week 4 or so I started having a burning sensation almost like severe heartburn at first it seems like it was in my stomach but then I realized it was more in my lower esophagus ( please note that I have never had or experienced any symptoms of GERD even when this first started) My surgeon had prescribed both ranitidine and omeprazole to me after the along with Carafate POEM and it was my understanding that this is fairly common and done to ensure that if you have some acid reflux after the procedure has loosed the LES you won’t get acid erosion. I took both of these medications and they did not seem to help if anything the burning sensation was getting worse and my ability to eat was also getting worse. A few things I should make clear:
1. On my first high resolution manometry study which I had in February of this year I failed all ten swallows and they initially diagnosed me as having Achalasia Type 2, during the surgery they changed that diagnosis to Achalasia Type 1 which based on the most recent studies I have been able to get my hands on is being considered by some researchers to be the end stage of type 2 ( somewhat confusing at least in terms of number order)
2. During the surgery they discovered that my esophagus was very distended and tortuous and this did create some problems in terms of the POEM, surgery was scheduled for 90 minutes. I was in for almost twice that amount of time. ( my surgeon has done this procedure over 150 times and is the head of the Esophageal and Lung institute at West Penn Hospital Pittsburgh.
3. I evinced NO SYMPTOMS of achalasia before September of 2015. My first set of symptoms was needing to clear my throat often and having the sensation of having something stuck in my throat. Within a month of the onset of that symptom I them found myself with a tendency to choke when laying down flat on my back. By October I had begun to find myself after eating or even drinking one glass of water feeling like everything was just kind of sitting at the back of my throat. The regurgitation started in November. Please also note I have never experienced wasting or weight loss, quite the opposite in fact.
Since the Surgery which took place on April 15th of 2016 here are the medical events that have happened;
1) The morning after the surgery they did a test to ensure that I had no leaks, they seemed very concerned about this because they had such difficulty with the POEM due to how distorted my esophagus was. The first swallow they gave me of the dye didn’t go through after 15 minutes so they made me wait and swallow again, the second time it went through and they said all good you can go home. Jell-O and clear liquids for the first few days.
2) I was back on soft foods within four days and solid foods within two weeks. No problems at small portions, drank water.. all good for about four to five weeks.
3) At the end of week two while at home I had a massive allergic reaction to one of the medications: I woke up on a Saturday night/Sunday morning burning and itching all over head to toe bumps and swelling in my throat – My husband gave my liquid Benadryl and then took me to the ER where they gave me an ephedrine drip and asked me about the medications I was on. The ER doctor didn’t seem to think that omeprazole, ranitidine or Carafate would cause this. He seemed to think I was having a delayed non serum reaction to the Doxycycline they gave me before and during surgery. All I know is it took a full week for the rash to go and I was bed ridden for five days taking Benadryl every four hours in order to get relief from the itching and burning. Since that time I have discovered on my own that Carafate does seem to cause me to itch as does omeprazole. So these days to be on the safe side if I need it I take ranitidine.
4) After the allergic reaction I started to notice that I was feeling kind of a vague nausea I was still able to eat and drink fluids without feeling like I was choking although I gradually started to have to clear my throat again.
5) When I went back to the surgeon for follow up at week 4 after the surgery I told him about the allergic reaction which I had already reported to his office nurse. I also told him that despite the antacids I had a burning sensation and felt nauseas, we discussed my itching problem with the Carafate and omeprazole and he indicated that although he didn’t think I was having an allergic reaction to those medications, if I was then it was most likely to the be the Carafate and then possibly the omeprazole but that we needed to use at least one acid reducer so eliminate those and continue to take ranitidine. To this day they have not been able to tell me if I had a delayed non serum reaction to the Doxycycline or an actual severe allergic reaction to Carafate or ranitidine.
6) It was at the above appointment that they asked me to take the ranitidine twice a day and to make sure I ate smaller portions chewing thoroughly and enabled the esophagus to heal from any acid erosion and this was when they explained to me just how tortuous my esophagus had been and what some of their difficulties were with the POEM but that they thought it may still have worked since at this point I was not having full blown Achalasia symptoms just the throat clearing.
7) I went back for another follow-up appointment at week 8 and explained the symptoms were worsening, and that I was back not just to constant throat clearing but also to regurgitation and spasms in my chest ( which I had not had before) as well as the constant feeling of fullness in my throat. They asked me to go back on a soft diet and eat very small meals six to eight times per day and explained that they still thought the POEM had worked but that what I have now is basically a really slow running drain at the bottom of my esophagus like a funnel. Frankly as I sit here writing this, (0ver the period of about three hours) I have had a hot cup of coffee and one cup of mashed potatoes, I feel as though I have a lump in my throat and I can hear the sounds of gurgling, draining and other noises my esophagus is making. I will get a spasm shortly and then some of it will go down and the rest may come back up…...
8) Before going back for my follow up appointment at week 12 last week I spoke to my regular gastroenterologist about what was going on and he actually set me up for the barium swallow I had last Wednesday. I have the results there is no difference between the results from the one before the surgery and this one expect this one is a little worse….
9) I went back for another follow up appointment at week 12 this was last week (Thursday, I took the initial results from the last barium swallow with me) . I finally got them to admit this had failed. I had to actually explain to my doctor that I have, apart from the 'A Patient's Guide to Achalasia' ,read every study I can download off the internet about Achalasia, that I understand POEM does not always work that I may have mega esophagus that I don’t blame them I just want an open honest discussion about what the true state of esophagus was and what my options are for treatment. I don’t expect a cure or a miracle just honest discourse.
I am scheduled to go in this Friday for an EGD, if they don’t find scarring or another problem they may do the balloon dilation at the same time ( I know this is a temporary solution but if it buys some time to get my financial house in order before serious surgery I will do it. If they do a find a problem then it will be about figuring out if it is Resection , Heller or Esophageal removal. I would be interested to know if any other patient reading this has gone from no symptoms to this level of severity in such a short time. I would also like to know from the people who are at end stage what [procedure did they end up having done and how well has it worked.
I appreciate your response to me and I wanted to respond back in as thorough as way as possible as you may have some insights or suggestion I have not yet read about or thought of.
Best
AD