Posted 10/28/2015 5:33 PM (GMT -7)
Talking to my GI yesterday, it looks like surgery is looming for me. I thought for my own benefit of collecting my thoughts about it, and for anyone else heading towards surgery or just wanting to see where the road goes I'd journal it from where I am now, to post-op if/when I have surgery. I'll do the short version of where I am at the moment first, then the long story of how I got here below.
Female, 28, 73kg/160lbs, current dx LPR.
Watery sinuses, like what it feels like if you breathe in water while swimming
Thick sinus and throat mucous
2 "lump" sensations - one feels like I'm being choked and makes it feel like I'm short of breath. The other feels like there is a pill stuck in my throat and I have a lot of difficulty swallowing when its happening.
Stabbing ear pain
Chronic shortness of breath
Throat pain and scratchy throat
Post nasal drip and runny nose
Upper abdominal pain, along diaphragm
Aspiration of reflux
Some of these symptoms probably seem contradictory (dry eyes/watery eyes) but that is because I have "dry" days and "watery" days. If my sinuses feel ravaged and filled with fluid, my eyes are constantly stinging and watering, but if I am clogged up with mucous then my eyes and mouth are bone dry. The cough and regurgitation are the two most consistent things
The journey to here:
I was first diagnosed with reflux when I was 16, I had what was thought to be a really bad case of bronchitis, or antibiotic resistant chest infection, because I had an endless cough and shortness of breath which wasn't responding to my normal asthma treatments, I was on a nebuliser all the time to help me get some relief with breathing. In a last ditch effort to try to figure out what was going on my GP sent me to an ENT to have my throat examined. While there the ENT suggested that reflux could be the cause (which both my parents and I thought sounded ludicrous) and said to try a month on Losec. Lo and behold he was right and within about 2 weeks I was well on my way to recovery. Since then every so often, maybe once or twice a year, I have had recurrences but another course of Losec has always put things at bay. As time has gone on I've had symptoms more classic of GERD accompanying the telltale cough, heartburn, upset stomach, nausea, but it has always been pretty mild.
Four years ago, I started seeing a neurologist who was treating me for partial seizures (which eventually turned out to be atypical migraines) after the antiseizure medication I was on became less effective (turned out that med was actually a migraine treatment too) we started the game of switching round medication.
I ended up in hospital where they too changed my meds and strongly advised my neuro that I come off one of the meds I was on, Lamictal, because it could be making things worse. Fast-forward and all testing is done and has shown the original dx was wrong, so I get told to wean myself off the antiseizure meds. The first one I come off is the Lamictal and it is hell, despite going at a snails pace I had a raft of awful withdrawl symptoms, one of the worse ones being the most intense heartburn I have ever felt, it was cripplingly painful made me incredibly nauseous and felt like it could only be relieved by doing a lot of vomiting. So on to another Losec course, the heartburn died down and went away, and that concern got pushed to the background while I dealt with the raft of medical problems that had cropped up this was when I first felt the lump, as well as crippling abdominal and chest pain, and your typical flu like symptoms. To cut to the chase, I was given dx's of chostochondritis, pluerasy, the generic "its a virus", glandular fever, hepatitis, then my wonderful GP (who hadn't been involved up to this point) said no no no, go get an upper abdominal scan, I think you have gallstones. Sure enough he was right and caught it just in time, the surgeon said had it been left another month it would have progressed to pancreatitis.
So I had it taken out, and began recovery assuming that it was the cause of all the problems. In the first few weeks after surgery I ignored anything odd because I was still coming off the antiseizure meds, and recovering from surgery so I knew there was no point starting up any investigations again. Once I had recovered from the surgery and was completely off the meds I still had this lump, flu-like symptoms and cough, with the addition now of regurgitation. So it was back through the gauntlet of testing again, this time looking at thyroid problems, lung problems etc. anything that could explain the lump. As many of you have probably already guessed not a single throat scan or x-ray uncovered any trace of a lump in my throat and yet I was completely debilitated by the effects of it. At this point it was about to be chalked up to anxiety, when I challenged the doctor I was seeing and asked if she would have said that if I wasn't already being treated for anxiety, to which she admitted no she wouldn't. As a last ditch attempt, thinking maybe it was a problem with my esophagus she sent me off for a barium swallow which showed reflux and a small hernia. When she gave me the results she said that its not unusual for people to have reflux, and none of my symptoms were what you'd see with reflux. It was at this point that I pointed out that I had been on treatment for reflux for nearly a year straight now from the heartburn incident, and it was a giant facepalm moment for her.
I was referred to my current GI who jumped straight up and had me booked in for an endoscopy, manometry and pH test. The endoscopy showed mild bile reflux into my stomach, not unusual for someone without a gallbladder, a bit of inflammation but nothing concerning. The manometry showed my swallowing was pretty normal, there was the odd missed swallow but nothing out of the ordinary, and my UES was putting out above average pressure, LES was fine though. The pH test was the real informer, it showed that despite how symptomatic I felt during the day with regurgitation and everything else, I was actually having 3x more events at night, they were majority acid, and they were reaching my UES. Naturally this concluded the diagnosis of LPR. By this stage I was on Losec and Motillium, the latter being given to treat the regurgitation, and had Ranitadine and Gaviscon added to the mix. Due to the gallstones I had already been following what was essentially a GERD diet for over a year anyway and I was eating small meals because its all I could handle after my surgery, but I now made the behavioural changes too e.g. stopped eating 3 hours before bed, got a wedge to elevate me at night etc. At this point my GI was not enthusiastic about my progress and was reluctantly saying I may need surgery, but he was very unwilling to do a referral so soon after my gallbladder was taken out.
Due to him being a super popular GI I wasn't able to book in to see him for about three months, then this week I managed to get in on a cancellation, only two weeks off my appointment but still, its better than nothing. I should note now that because of how severely this has affected my breathing, I have had to leave work, if I go anywhere I end up needing days to recover from the toll my breathing struggles have. So over this waiting time I have had nothing to do but sit, dwell and analyse everything down to minute detail.
This appointment was yesterday. We talked about the medication I was on, and the minimal temporary improvement I had from them. My GI said that there wasn't anything left he thought would help in the way of medication and said that it was time to start looking at surgery. He was still very hesitant though and said that he gets a lot of patients, usually from ENT's, who have been diagnosed with LPR, who have had LNF's (We dont have TIF or LINX done here) with no success because it has turned out that the LPR caused the initial problem, but something else - be it post nasal drip, sinus problems, lung problems - has exacerbated and prolonged the symptoms. Naturally because of this, surgery was a failure for them. Because of this he has given me the referral for a surgeon, but strongly recommended that I get checked for anything else before going through with surgery. We also discussed my gallbladder removal, and although it was initially dismissed, he said that there is a small chance the bile reflux could be causing problems as well and gave me carafate to try. The final thing he said was that in some instances it has just been a case that not enough time has passed to heal properly.
At the end of this appointment the result was this
1. I could see the surgeon now and get the surgery done
2. I could see an ENT and rule out any other possible causes
3. I could do nothing and see if I just need more time to heal
I probably don't need to say that the idea of just sitting, waiting, doing nothing, is the least desirable one given how long this has already gone on for. I have decided to go with route 2, I actually had an appointment with an ENT booked already to get the damage assessed and to see if there was anything else going on or some way I could manage the symptoms. In the mean time I am also giving the Carafate a go, if it works then great, I think I can handle taking that and Omeprazole. Unfortunately I suspect given the severity of my sinus issues now, the fact my sinuses were impacted by my wisdom teeth when I had them surgically removed, and the problems we had getting the manometry tube through, I fear that either way I am going to end up needing some form of surgery, though I would take sinus surgery over a fundoplication any day.
Right now I'm about to pack for a flight to see my parents, they are giving my fiance a break from looking after me. I'm looking forward to seeing my parents, but I'm not looking forward to the pressure changes in the plane, its gonna hurt bad! So I'll wrap this up here. My ENT appointment is next week, so I will update my progress with the results of that.