Posted 4/22/2013 1:11 AM (GMT -6)
Have I ever considered changing doctors? Ha. That's a funny one.
I'm going to try something new. Instead of posting small posts, I'm going to try to make one post that explains everything. I've been trying not to post too much information, but when I don't post enough there are a lot of questions that I can end up answering, like what I have and haven't tried. Excuse me if I sound extremely angry, that's just because of everything that has happened, not because of anyone on this page.
I started out visiting an ENT doctor about this constant itch in my throat. At the time I was 14, but for as long as I can remember, this itch has always been there. I literally cannot remember a time that I have not had it. It's always there either as a need to cough, or just clear my throat, but I have to swallow or cough just about every 10 seconds. The reason I was finally seeing a doctor about it was because it was preventing me from be physically active. I used to play soccer, and every time I tried to run I had this thing in my throat stop me, telling me I have to stop running because I'm choking. No matter what physical activity I tried doing, this choking feeling always stopped me, whether it was running or swimming or even just trying to use a rowing machine.
I explained this constant cough and choking feeling to the first ENT, and her response was that she had no idea what it could be because it wasn't something she recognized in her department. She recommended that the breathing problem I had could be asthma, which I knew I didn't have, and that I should see a GI. After explaining the same details to the GI, and he too suggested that the breathing problem could be asthma. He asked a few more questions and ordered an endoscopy. The endoscopy ended up showing a couple terrible pictures of my esophagus and what was thought to be barrets, but they were not completely sure.
He diagnosed me with GERD and gave me a prescription for heartburn. He also told me all of the common triggers of reflux and lifestyle changes that I should consider making. I elevated my bed and learned to avoid certain foods, etc. A while later, his office contacted me again and said that they had reconsidered my first endoscopy and diagnosed me with eosinophilic esophagitis and not barrets. After that he recommended me to several other doctors, including moving me to a new pediatric specialist for the esophagitis. He recommended pediatric specialists because of the face that I was still growing at age 14.
After I moved to that new hospital, I routinely saw one specialist for GERD, one specialist for EE (which ended up being more like a team of specialists), and a bunch of other doctors that I got recommended to as different things came up. The first thing the GERD doctor did was change my prescription from one PPI to another and order another endoscopy just because the first one wasn't from her hospital. My EE specialist ordered an allergy test and prescribed two inhaled steroids in addition to the PPI I was taking.
The allergy test was exciting because the nurse ended up needing twice as much area on my arms as she thought she would need. Instead of a short amount of each arm, she used the front and back of both my arms, and every single thing came up with some amount of allergic response. Before the test, I had been avoiding dairy products, but nothing else. I had peanuts almost on a daily basis with no allergic reactions, but the test said I was allergic. Corn, beans, peas, shrimp, rice, nuts, milk, pollen, and cats all came up positive for allergies. I asked both the allergist and the EE specialist how much I should avoid them, and they both said to avoid all of them at all costs, even though I had never had any problems other than the esophagitis. I was told to edit my diet to avoid these foods as best as I could and then to schedule a follow up endoscopy 4 months later.
Meanwhile the GERD specialist decided that it would be wise to move forward on preventing the reflux during the months of editing my diet. The first thing she said is that I probably have asthma, and she recommended that I see a pulmonologist and another ENT.
The appointment with the pulmonologist was brief. He didn't think I had asthma from the start. He ran one test that proved I didn't have asthma and was out of information. He canceled my nasonex prescription that I got from the allergist and sent me back to the GI. The ENT appointment was just as brief, but less productive.
After it had been a couple months, I had the first follow up endoscopy. The results said that my esophagus was getting a lot worse, and I was feeling worse. The EE specialist decided to keep me on the inhaled steroids and take all foods with milk and soy ingredients out of my diet (because I had been avoiding milk but not all foods with milk ingredients). I was told to make these diet changes and then schedule another follow up endoscopy 4 months later.
Going back to the GERD specialist, I reported that my EE was getting worse and that the ENT and pulmonologist had nothing valuable to say. She still wanted to say that the breathing problem was caused by something else other than GERD, but she never did bring it back up. She just ignored it, and focused on controlling the GERD as a whole. She ordered a pH probe and recommended that I see one more doctor that I never did actually get to see for some reason.
On the day that I had the pH probe, I decided to stay at home so that I wouldn't have to worry about a bunch of high schoolers annoying me and remembering it for the rest of my time there. Because I stayed at home, I had a little bit of activity when I decided to go running for a few minutes and the rest was all sitting in my house. As a result I had a day with less heartburn than usual. The results showed that I had moderate reflux, which I knew wasn't true.
The next follow up endoscopy went by and the results again said my esophagus was worse. This time the EE specialist took away all foods with gluten and egg ingredients from my diet. I waited several months, had another endoscopy to track this, and then sure enough the results showed my esophagus was better. I woke up and left the hospital to the words "you're cured", but I felt worse than I did when I started the treatment. Multiple years of jumping around from doctor to doctor and editing my diet down to practically only fruit and meat and my esophagitis was cured. If only that made me feel better.
The EE specialist cancelled my steroid prescription and scheduled another endoscopy to see if the diet or the steroids were helping me. Months later the results showed that my esophagitis was still gone. I asked my doctor whether I should stay off all the foods that trigger esophagitis if it doesn't make me feel any better, and she said her honest opinion was that I needed to avoid the EE at all costs.
By this point more than two years had gone by. I reported back to my GERD specialist to say that my EE was cured and that I felt worse than I did two years ago. The only answer I got was that she doesn't recommend surgeries for pediatric patients (I was now 16) and that there was nothing else she could do. She had no doctors to recommend, no tests to order, nothing at all. She just said she was done helping me. A couple of months later, she stopped being a doctor to take a job with the FDA and I lost contact with her entirely.
After I lost contact with both specialists, I basically stopped seeing doctors for reflux for two years. During this time, and throughout my entire life, I was dealing with epilepsy. Because this thread isn't about epilepsy, I'll keep it down to a few sentences. I used to have seizures averaging about once a month, give or take. Right when my need to see reflux doctors faded away, my seizures got worse, eventually getting down to three to five a week. I only saw two doctors for epilepsy, which was nicer than having to see all the different ones I had seen. As the seizures got worse, I transitioned into different medications that all either didn't work or had unbearable side effects. Right when everything was at its worst, I was having a lot of seizures and on a medication that made me suicidal, on top of everything else. That transitioned me into seeing the second doctor more, and eventually having brain surgery at johns hopkins. The surgery was one year ago and successfully stopped all of my seizures.
After I had the surgery, I started seeing new doctors about what might be affecting my throat. Somewhere down the line I've left out a few, but by this point I had seen some 50+ doctors and was not too pleased with what each doctor had to offer and how much to expect out of any single appointment. I had a few appointments with a vocal chord specialist that confirmed that I do not have a vocal cord disorder, by my vocal cords were severely burnt by acid. I also had routine appointments with my dentist who said that all the enamel had been melted off of my teeth, and that he believed acid was the cause.
Three months ago I started seeing a new GI at Johns Hopkins. I explained just about everything that has happened, and she took notes for about half of the time I explained it. After that she just nodded, even though I think she had stopped listening. I tried to stress that I had a major problem with exercise, to the point that climbing a staircase sent acid up my throat, but she, too, ignored that detail. I also tried to stress that I want to consider the surgery, but I don't think she is as eager as I am. She ordered a barium swallow and a repeat of the pH probe and endoscopy that I hadn't had for over two years. The barium swallow showed that I have a small hiatel hernia. The endoscopy showed that I do not have esophagitis but that my esophagus is looking quite bad. The pH probe showed that I had 156 instances of reflux during the day, but zero at night. I had the 6th endoscopy and the 2nd pH probe on the same day, and I was told the results would take 7 to 10 days to get back, but it ended up taking a whole month. The entire johns hopkins GI department ended up looking at my pH probe results, but none of them could figure out how I could possibly have 156 episodes during the day and zero at night.
I heard back from my doctor last week and she told me the results and that she is not willing to move forward towards surgery because they do not feel they have a good understanding of my esophagus. She ordered a manometry and that's where I am right now.
Sorry if it feels like I am dumping all of this onto people, but I keep getting responses that give suggestions to thing I have already tried and been through, so here's a bigger picture of the story.
Right Temporal Lobectomy 4/5/12
Diagnosed with GERD, Eosinophilic Esophagitis, and Epilepsy.
Studying biomedical engineering to research a better fix to at least one of them.