Hi friends. I thought I would post an update. Sorry it's so terribly long, I will sum it up as best as possible and will still miss details, I'm sure.

I went to my appointment with the oral surgeon a few weeks ago and told him I believe that an ENT would be more appropriate for me than the oral medicine specialist. He agreed that an ENT would benefit me (especially with the palpable posterior lymph nodes I discovered on my neck and constant throat pain), but also was adamant that I keep my appointment with the oral medicine department at the University. Apparently the oral medicine unit (which I had never heard of) consists of a multidisciplinary faculty of doctors from many specialties, including ENT, systemic diseases (autoimmune etc.) that will all be working with me to uncover the underlying causes of my issues. I agreed to keep that appointment and also see an ENT.

In the meantime, my throat continued to be sore, but my mouth ulcers were healing with extensive oral candidiasis lozenge treatment. I saw the ENT this past Monday. I was so unimpressed. He checked my lymph nodes and told me that my neck is just skinny, and that's why I have lumps. He also "informed" me that my mouth was fine, and I just bite my cheeks. I was almost in tears just three minutes into the appointment because he was so cold. He then did a nasal scope thing, which took about one minute. He took it out and said that I have vocal chord nodules (I'm a singer) and that I needed to see an GI doctor "like yesterday." He said don't wait until tomorrow to make an appointment with GI, and sent me on my way. He didn't even give me a real report of his findings. I cried the whole way home.

Later that night I started getting that lump in my throat/chest feeling (I have GERD something fierce from past surgical complications - I had had an issue like this in the past, but it healed with Carafate treatment before they could get me in for the endoscopy, therefore they just "assumed" it was a bout of esophagitis). Everything I ate on Tuesday was so painful going down my esophagus that I just couldn't stand eating, and even vomited my dinner, so that was the last time I ate. By Wednesday afternoon (yesterday), I had a low-grade fever, my neck was stiff, and my referred ear pain was at its worst. I called the triage nurse at the ENT clinic and she sent me to the ER.

Of course the ER couldn't do much, but the doctor was fabulous. She ordered a CT of my neck to see if there were any obvious signs of structural changes or tumors (thankfully there were none). She also pulled up my chart and gave me a full report from the ENT. It said I have laryngopharyngeal reflux and that what the ENT could see of my esophagus, it was pretty eroded and ulcerated. They assume that the candidiasis and dysplasia has spread down my esophagus and is causing the severe pain. In the meantime, I am to stick to a clear liquid diet until I can be seen by the GI.

GI got me in for a "consult" in a week. They called and tried to reschedule me with an esophageal disorder/cancer specialist, because my GI provider thought that would be best given the results from my ENT, but that appointment would have to wait until the end of August. I said no way can I wait that long, so I kept the first appointment as well. The ER doctor said to make sure I took every first appointment available from here on out and not to let anyone make we wait.

Anyway - that's where I am now. I really feel there is something systemically wrong with me. A few weeks ago, I had a recheck on my iron levels with my PCP, and my WBC were at a 4. Since November, the levels have dropped from my normal 8, down to a 5.9 in March to a 5 in May and now a 4 in July. My body is getting tired. And I'm 32 years old and chasing two toddlers... I wish I would stop getting pawned off on other specialty doctors :-(

I'm sorry for my negativity in this post. Most of you have been through so very much worse, and I really have no right to complain. I just find comfort in posting my thoughts on here, so I do thank you for all your wisdom and insight.

Keep us posted.

It sounds like you have things moving forward. I wouldn't worry as much about the doctor's personality traits at this point. You want ones with a lot of education and intelligence.

Warning. Long term gastric reflux is a lead up to esophageal cancer. Ideally LIMIT whatever you take in that's acidic. My father in law like his wine and had a long term history if gastric reflux. He was dx'd in sept. With esophageal cancer. I am not sure what your eating habits are, but minimize the acid, and eat smaller frequent meals daily, plus take a reflux med if you can. Still hoping its nothing. Hugs

I have severe GERD due to complications of a gastric leak I suffered after bariatric surgery. I had a stent placed in my lower esophageal sphincter for 6 weeks to allow the leak to heal. I nearly died. This was 2 years ago. I was told I would have problems with reflux and have been on high dose of PPI therapy since then. I eat very little, and even less now that It's so sore to eat.

I went for my first visit with the GI doc, who was sadly of no help. She just said I need to keep my appointment, you guessed it, another doctor. One that specializes in esophageal disorders and cancers. She claims that this group of doctors has reviewed my case and is ready to take it on. Everyone just keeps telling me that I'm such a "unique" case because of my previous post op history, and I'm starting to feel like nobody will help because of it. Now I wait until the 19th to have a consult with this group.

My ENT wasn't worried about my palpable posterior cervical lymph nodes, but I am a sonographer and went ahead and put a probe to my neck to see for myself. I now know that I have multiple 1.5-2.75cm lymph nodes. And those are not normal sizes. They could just be reactive to what ever is going on, but who knows, it could mean much more. There's just so much. Blah. Waiting waiting.

Hope all of you are well as can be.