Hi Everyone,
I’m a 36.5-year-old male and I’m new here. I have had a long history of medical issues, mostly dating back to when I was 18-19 years old and have been searching for answers ever since. Just an FYI, I had medical issues before this, but it wasn’t until I was this age that my health started to decline more and more every year. Some of the information I will share may not be related to ES, but due to it has gave me a lead into other problems which eventually found a possible link to ES in the end. Another note I have not yet been diagnosed with ES, but it was noted within my records on a Cone Beam CT scan I just got back in February of this year as a possible finding and to seek more testing to confirm or deny it. I will give you a list of all medical diagnosis I’ve been given over the years and surgeries I’ve had that may or may not have links to ES.
Here are the Medical Diagnosis/Surgeries I have had over the years.
- High Calcium Levels and Hypothyroidism first found when I was 18-19. Doctor thought I had Cancer but couldn’t find anything. I’ve struggled with both of these ever since. I’ve also have had problems when my thyroid goes way to far to the Hypo side my Triglycerides are off the charts (Highest was 1,867, when my thyroid was at 12.7).
- In 2010 I developed a chronic cough. It took about a month for me to find the cause, but it ended up being my Uvula was so elongated that it was touching the back of my tongue/throat. Every time I breathed it would move just enough to tickle my throat and cause me to have to cough. This is where my major surgery problems started. I went in just wanting to get my Uvula shortened to end the constant tickle causing my chronic coughing, but the doctor wanted to do more. First, he said that I had a deviated septum, second, I had a polyp in my right nasal cavity, thirdly he said he wanted to remove my tonsils as I constantly was getting sore throats about 1-2 a year, and finally he would shorten my Uvula. I didn’t want anything, but the polyp removed, and the Uvula shortened, but he insisted I get the other 2 done as it would reduce my sinus infections and reduce my sore throats in the future. In the end it made everything worse, except for the Uvula. One he fixed the deviated septum by removing the cartilage, mashing it into a paste and reinserting it into my nose. The idea is it heals and you are all set, well my healed incorrectly and caused my nose to become more deviated and plug off my nasal air ware in my left nostril more than before to the point I was daily cleaning out my nose of dried mucus that finished plugging off my nostril. Two, he never removed the polyp like he said. Finally, ever since he removed my tonsils I’ve gotten to the point where I get sick now about every two months for a total of 5-6 times a year down from 1-2. Not only this I now have had an increased likelihood of swallowing down the wrong pipe ever since.
- Finally got officially diagnosed as Autistic (Level 1) in 2013 just after the DSM-5 was released. I was tested once before under DSM-4 and didn’t qualify with another doctor. It wasn’t until my phycologist agreed to let me test again but said he didn’t think I was autistic but would test me if I really want it and to wait till the DSM-5 came out in a few months. When I did get confirmation that I was autistic they said that the DSM-5 had rewrote the diagnostics. I wasn’t truly given the label Autistic, but Social Pragmatic Communication Disorder. It is a PDD-NOS, according to the DSM language; and was told that if I would have been diagnosed with anything in the DSM-4 it would have been Aspergers. This is probably why I didn’t get diagnosed when I was tested under the first time, they were only looking for Autism not Aspergers. (Which Aspergers is now an outdated term for a few reasons, mostly due to the fact the person who coined the diagnosis worked with WWII Axis Powers). In today’s terms it has been absorbed all into autism spectrum disorder.
- When I was 25, I ended up getting sciatica in L4-L5 from a herniated disc causing pain down my left leg and numbness in my foot and had to have back surgery. The week of the surgery I started to get sciatica on my right side and asked if he could fix that while in surgery. He said he would try, but sadly when I was out of surgery, he was unable to fix my right side due to the hospital and insurance regulations. He actually within a month of doing my surgery had resigned from his job at that hospital due to the reason he couldn’t help out patients like me due to the regulations set upon him there. Luckily over the next year most the pain went away from both sides.
- Then for my 30th Birthday my present was L5-S1 Sciatica from another herniated disc causing the same pain down both my legs and numbness in my feet. This was the worst pain in my life and came so fast, that my mind couldn’t take it that I was on the verge of Suicide. I was really luck this time though as Emergency was able to get the pain down fast (sadly had to have Morphine Twice over 2 visits) and then I found a doctor that was able to give me a corticosteroid shot that numbed the pain for a month. I was going to go a second time but got luckier and was able to find one of the best back surgeons before having to have another cortisone shot. So, on Valentines Day 2019 I got my second back surgery. This is where the bad news came in; the surgery took almost 2 hours longer than expected as when they went to remove the herniated portion of the disc, they instead of it being gel like and bulging it was hard as a rock and had calcified. The surgeon removed the calcification as he said that was the fastest thing to do, but if he would have known beforehand that it was calcified instead of bulging like he thought he would have done a fusion of my back. He said I probably will have to have another back surgery in my future in about 15 years which that was 6.5 years ago now.
- On Thanksgiving 2017 I came down with a sinus infection and oddly got a tickle in my throat like a feeling of a feather or fish bone stuck in my throat. (I had just started to eat fish for the first time about a month before, so I thought I had a fish bone in my throat). A trip to the doctor found nothing but was able to get an antibiotic and steroid and it went away about 2 weeks later. In 2018 I got it again but didn’t last more than a week and thought nothing of it.
- In August of 2019 I was so fed up with my sinus issues from the previous surgery in 2010 (bullet point #2) that I had my deviated septum repaired again. This time my new doctor used a newer method and instead of removing the cartilage and reshaping it and reinserting it they just removed it and threw it away. This has helped immensely, but not completely. Come September/October 2019 after I’m all healed and doing great; I come down with another sinus infection and then I get a tickle in my throat like back in 2017 and 2018, but this time it will not go away. I tried to get antibiotics/steroids and since the sinus infection cleared on its own, but I still had a tickle in my throat they wouldn’t give me anything. As time went on, I keep getting sicker and sicker and every doctor I see has no clue as to what’s going on. In December of 2019 I ended up in Emergency as it still hadn’t cleared up and was still getting worse. I was having coughing spells about every hour and would cough to the point I would almost pass out due to not being able to catch my breath or my Vocal Cords would seize up and choke me, robbing me of air. In Emergency all they could find was they said it was GERD and gave me acid reflux medication. Come to find out when it finally subsided just before my 31st birthday and just before Covid hit, that I believed I had Whooping Cough and they wouldn’t diagnosis it. I thought this as I know I had the TDap Vaccine in 2015 but come to find out it didn’t include the Whooping Cough portion of the Vaccine and records show I had that in 2004-2005, so I was overdue for the Whooping Cough Portion and demanded I get it, or I wasn’t leaving the doctor’s office.
- During Covid (2020) I started to develop heart palpitations, high blood pressure, dizziness (lightheadedness 98% and Vertigo 2%), even more fatigue, and high pulse rate. This didn’t happen all the time though and would settle back down to normal after some time. FYI, I’ve always have had fatigue and linked it to my thyroid, but during this time it had ramped up drastically. I never did get Covid until 2021 and about 6 months exactly after having the Vaccine, so I have never seen a reason to link Covid or Long Covid to any of my symptoms.
- In late 2020 I was also tested for Parathyroid imbalance to see if that could link all my issues especially with my history with High Calcium and was considered by the doctor to be a hypochondriac as my levels were normal. But with my history of High Calcium and Parathyroid levels it does put me really close to possibility of Malignant Cancer territory. This has never been followed up on and even when looked for was never found.
- In 2023 I was tested for allergies again (bad experience with previous allergist); old allergist said I had about 20 allergies and to just use nasal steroids (most doctors all the time tell me to use nasal steroids like Flonase, etc. but due to my autistic sensitivities I can’t stand them). Came to this new allergist and they did then same test and more (this allergist did the under the skin needle injection allergist test instead of just the prick test). Come to find out I’m not allergic to anything, but he wanted more test to rule out auto immune disease/deficiency. Come to find out that I have an auto immune deficiency called “Mannose Binding Lectin Deficiency”. The main problem with this deficiency is not that I’m more prone to getting sick; I could be standing next to someone with the flu and not getting and someone else would, but when I do get sick, I’m twice as sick as the average person. So, when someone comes into emergency with a life threating disease, they would be okay; I could be on my death bed.
- Come to 2024, I was getting more and more occurrences the symptoms I had during Covid in 2020 and believed it could possibly be POTS (Autism has been linked to many other health problems including Gastro-intestinal, POTS, Ehlers Danlos Syndrome, etc.; also most autistic people have an emotional energy level that just compounds the energy level symptoms to cause even higher fatigue). So, I had a heart monitor put on for a month to record my pulse and rhythm in February and that showed nothing other than I had a high of 143 pulse rate at one time but was having extreme fatigue and pulse rate of 120 that would last for 4+ hours just from eating a meal. About in April a few weeks after the Heart monitor test was done, I came down with another sinus infection and this time I wanted to get to the bottom of why I keep getting sick. During this time, I started to get the tickle in my throat like always and since we knew it wasn’t caused by a fish bone, I thought it could be a Zenker’s Diverticulitis causing my tickle. I thought this as every time I get the tickle if I don’t get antibiotics/steroid I start to produce phlegm in throat right where the tickle is. It always feels like I have bronchitis or pneumonia, but the doctors can’t ever find any traces of either. This then leads to the Vocal Cord spasms and Whooping Cough symptoms. So, during this time, I was trying to not only get tested for POTS I was also sick. But since I was sick, I thought this was the best time to not get antibiotics/steroids even though I knew I get twice as sick as the normal person. I did this in hopes that they would be able to find something. It’s kind of like when you take your car into the mechanic and say I hear a clunk and hand it to them and they come back with nothing, then you drive it away and your hear the clunk again, I wanted them to find something that kept getting worse instead of doing a temporary fix and have them find nothing.
So, while I was sick and trying to get tested for POTS these are the things that went on:
- Since I had been diagnosed with GERD back in 2020 it has gotten worse to the point of Gastroparesis. Problem with both is GERD Medicine doesn’t always work, and some have even caused it to worsen. I normally don’t eat but 2 meals a day if that. Sometime using the restroom cures it sometimes it doesn’t. Just eating saltines and drinking water has caused my GERD to worsen. I’ve thrown up due to the Gastroparesis. I took a Stomach Emptying Test, and it came back normal, during the test I felt like I had GERD/Gastroparesis. My GERD when thrown up has caused my Tickle to get worse. I have spouts of GERD/Gastroparesis, and they can’t be linked to food, medicine, and/or my gut; they are always random and come usually in waves of 1 week on 1-2 weeks off.
- I was scheduled to get an Endoscopy for check for the GERD/Gastroparesis along with check for Stomach Ulcers and the Zenker’s Diverticulitis to all rule out where my Tickle in my throat was coming from. About a month before this I was still sick as ever from the sinus infection and was going to see a Cardiologist to hopefully get tested for POTS. When we went into see him, he said you are a hypochondriac, stop Googling your diagnosis, your obese (yes, I’m obese, mainly due to the fact I don’t like to exercise, don’t have any friends or anyone to do anything with, and my fatigue wherever it comes from causes me to be so exhausted I can’t), your deconditioned, and there is no such thing as POTS. But your heart is as healthy as an ox (in the sense you don’t have any cardiac problems). He wanted me to still get an echo though, which was scheduled after my Endoscopy. Come to a week before I was to get the Endoscopy I get a call saying it’s been cancelled because the Cardiologist said I could die from the anesthesia and couldn’t have it till I got the Echo, which didn’t make any sense as I’ve had anesthesia in the past and never had a problem other than an upset stomach and threw up once. Due to this I had to wait another month of being sick to reschedule an uncalled-for cancellation Endoscopy, due to this imbecile cardiologist. We never went back (sad too that his colleague in the same office diagnosed my previous boss/employer’s daughter with POTS and she knows it’s real). Anyway, the Echo and the Endoscopy both came back normal.
- Next, the doctors wanted to test for Asthma as I had never been tested before. The new allergist (from bullet point #10) did do a blood test and it showed negative, but the new doctors wanted to do more. They did a Spirometry first and that showed normal and wanted to do a Methacholine test later but had to wait till I wasn’t showing symptoms being sick (sadly the day I did the test I was still sick, but about 90% better than before). Sadly, also the day of the test I came down with another case of Gout and could hardly walk. Yes, my Uric Acid levels are also high, and all my doctors think it’s Gout and not Pseudogout even though I have High Calcium as well. Anyway, I did fine with the Methacholine Challenge up until the last dose, I failed. I think I failed due to the fact I wasn’t completely back to 100% Healthy, but the doctors believe I have Asthma and gave me Symbicort for it. So far, every time I take it though it either doesn’t work or makes what they call asthma worse. During this time though I found out about an asthma mimic called Vocal Cord Disfunction and was tested and confirmed to have. The difference is mostly with Vocal Cord Disfunction is your vocal cords spasm shut due to strain, and you can’t breathe in, where Asthma you can’t breathe out due to bronchial constriction. In my case it’s due to my sinus infections causing a tickle in my throat and I cough to reduce the tickle, and, in the end, my vocal cords spasm shut due to the amount of coughing I’m doing (this all mimics Whooping Cough as well).
- Finally, I got to a cardiologist that actually knew what POTS was and had seen many patients with it. He didn’t think it was POTS, but it was closely related to POTS. I can’t remember the name, but it was the same symptoms of POTS, but mostly only happens after eating due to the blood rushing to my stomach to digest the food from my brain causing me to get dizzy spells and extreme fatigue. The diagnosis was closely related to POTS high sodium intake, compression socks, but best of all to exercise, which again is hard to do when you have no energy.
- Now onto this year, I finally got better back to full health in late November early December 2024 and sadly started to get another sinus infect in January and still no answers to why. I just happen to be watching YouTube when a Dentist had said that your teeth could be linked to sinus issues causing sinus infections and normally the only way to tell if this is the case is to get a Cone Beam CT scan. I then thought this could be another lead to find out why I keep getting sick as I did when I was 10 have my first top premolar on my left side removed against what I wanted as they said my teeth were too crowded and it needed to be removed so I could have braces (which that dentist didn’t even do my braces anyway). But I thought when he removed it if a small piece of the root was still in there as he just broke out the tooth without removing it via surgical means that that could cause an abscess in my Left Maxillary Sinus where infections always start. So, finally I was able to find a place that would give me a Cone Beam CT scan back in February of this year all while I was just starting to get sick from my infection. Anyway, I finally got the report in March and found out oddly my Left side is mostly normal other than mucus polyps, but I have a few other issues (I have attached the report below). This report is where I first found out about Eagle Syndrome as it states I might have Calcified Ligaments and further testing is needed to confirm. It was only after this report and looking up what Eagle Syndrome was that I can say I have almost every symptom that has ever been reported. Sadly, I couldn’t find anyone in my State at the time that work with Eagle Syndrome and when I did was about a week before I found this site and the doctor I did see seemed to dismiss me as another hypochondriac and you can’t have it as you don’t have Vertigo type Dizziness, my styloid are normal length and I don’t have neck pain equivalent to having to be in a neck brace. Not only this she only looked at my CT scan from a week earlier that I had got in Emergency. The Emergency visit was due to the fact at 8PM that night I had pain in my Right Mastoid Bone, and I was starting to get an earache. I went to lay down and took pain meds and an ice pack in hopes to reduce the pain and swelling. I couldn’t sleep due to the pain and came upfront about 10PM. 10:21PM I couldn’t take it anymore and started to stretch my neck and I felt a huge snap and heard a load pop, all the pain just felt like it disappeared. One minute later, I had a massive pain that spread just like when you get an IV that stings, but it felt like someone was trying to murder me and stabbed a knife into the right side of my skull. I was in so much pain that I was hunched over, and we had to have an ambulance called. I thought I was having an aneurism and my mother thought I was having a Stroke (very rare ES Symptom). When the ambulance arrived, they took my vitals, and my blood pressure was 148/110 with a pulse in the high 90’s low 100’s. Luckily the pain had subsided enough that we were able to go to emergency without the ambulance ride, but while I was in emergency the pain had spread to my left side of my head and now felt like someone had taken a clothes iron and stuck it on my head. Any breeze moving my hair was pure agony and I couldn’t lay my head on a pillow without that burning pain. According to emergency though I must have just had a Mastoid Process infection and it burst. Luckily the pain went away by the time I went to the Doctor for ES, but like I said before they were of no help.
Anyway, here are my symptoms":
- Neck Pain/Headache (Had headaches all my life, but 99% especially since 18-19 years of age have been at Base of Skull-C1, C1-C2, or C2-C3. Sometimes it’s a tension headache, sometimes it feels like a pinched nerve. Can only tell if the Medicine I take makes the pain go away: Ibuprofen-tension vs. Tylenol-Pinched Nerve)
- Ear Pain (Mostly only during a really bad sinus Infection)
- Jaw Pain (Again mostly only when I have a sinus infection and I chew too much when eating)
- Eye Pain (Trigeminal Nerve Pain within the past year in both eyes; mostly in left though. I also am Blind by the TRUE definition of Blind; in my Left eye. It’s blurry, but I can still see; I also have a problem where if I close my right eye, which is 20/20 and just use my left eye if I focus on one spot and either don’t move my focus or open my right eye my left eye will go completely blind aka black from my nose to my ear kind of like a camera’s shutter closing. It’s all due to my optic nerve being damaged a birth, my father has the same but opposite eyes are affected, he doesn’t have 20/20 in his good eye aka Left and is colorblind where I’m not.)
- Throat Pain (When I have a sinus infection and have phlegm in throat of coughing to much due to tickle)
- Swallowing Difficulty/Pain (Never really had swallowing difficulty until this last month, but pain again when my Throat has been agitated like all other symptoms)
- Chocking sensation (When I have a Vocal Cord Dysfunction attack due to the tickle, I also have a bad gag reflex, when I’m sick even brushing my teeth, I gag.)
- Foreign Body Sensation in Throat (Biggest issue I have which if not cured fast with antibiotics/steroids will cause gagging, coughing, Vocal Cord Dysfunction, Throwing Up, almost fainting/passing out, etc.)
- Visual Disturbances (Not so much until this year, I’ve been getting double vision)
- Tinnitus (I’ve had all my life and link it to listening to music too loud when I was a kid. It’s extremely high pitched. If you ever seen the commercial for RSV with the green flatlining line with the extreme high pitch, that’s what it sounds like.)
- Pulsating Tinnitus (Last year while just getting out of a doctor’s appointment for my father and his health problems, we had stopped to get gas for the trip home. Right after we got gas my right eardrum was pulsating with my heart and caused extreme Vertigo; one of the very few times I’ve gotten it. It went away after 5 minutes but came back again about 5 minutes later for another 5 minutes. This is the only time I’ve had my eardrum pulse tinnitus; I do hear my pulse about once a month when I sleep though and have my ear on my pillow, but I don’t think that’s true tinnitus.)
- Hearing problems/Underwater Sensation (When I get sick, I feel like I have water in my ears and it’s slightly muffled.)
- Ears Popping (I’ve always been able to pop my ears on command, unless really sick; not linking it to ES but do have it.)
- Limited Neck Movement (My neck becomes stiff a lot, not that I can’t move it due to pain.)
- Heart Palpitations (Getting worse over the years mostly after eating.)
- Hypotension and Hypertension (When I don’t feel good, I get one or the other, no rhyme or reason.)
- Orthostatic Hypotension (99% after I eat get the feeling that my blood pressure drops 1% just get random dizziness; most of the time my blood pressure is fine, and the 1% random dizziness could be low sugar. I’ve never been tested or told I have Diabetes, but both my parents do have it, and my blood work lines up with Pre-Diabetes at times.)
- Pressure in the Middle to front of Head “Not Back” (Seems to be related to the Trigeminal Nerve.)
- Twitching (Random when and where, but I get it all the time.)
- Changes in Voice (Ever since my worst case of Vocal Cord Dysfunction last year anyone that hears me say I sound different. Even, Google Smart Home products that I have a Voice Match for the past year sometime mistakes me for someone else and I just haven’t retained my Voice yet.)
- Hypersalivation (Always linked it due to a plugged nose when sick, but the past year whenever I sleep, I tend to drool more than usual even if I don’t have a plugged nose.
- Palpable mass in neck (when I get really sick at least the same 2 lymph nodes one on each side are swollen to the size of a marble.)
- Episode of feeling very unwell (getting worse day to day. Do have days when I’m fine though.)
- Worsening Symptoms in the Cold (My Tickle in throat causing me to cough and agitate my Vocal Cord Dysfunction can be worsened by the cold about 75% of the time, but again only when sick.)
- GI Problems (GERD, Gastroparesis, Dumping Syndrome “Opposite of Gastroparesis” aka passing of undigested food., Stomach/intestinal cramps, diarrhea, and/or Constipation.)
- Exercise Intolerance (I’m not good with exercise; and I know I said I said I didn’t like it before, but this is mostly due to the fact I am so exhausted/fatigued to even do it or get dizzy/lightheaded when I do.)
- Difficulty Sleeping (I have Insomnia, can’t get things off my mind, sleep too hot, GERD/Gastroparesis keeps me awake, and sinus issues where I can’t breathe.)
Below are some screenshots from my Cone Beam CT scan and the report linking possible ES. I have more Regular CT scans I could possibly share and/or if you would like me to get possible better angles from the Cone Beam CT scan let me know. But as of right now I’m at a loss as what to do going forward. I do have an MRI with and without contrast of the Cervical Spine Scheduled, but that’s due to the doctor’s (the doctor that dismissed it as ES and one doctor that wants to follow up and learn more on it) wanting it.
UofM School Of Dentistry Report Redacted.pdf (837.6 KB)
