I’ve been reading these forums for awhile, and I finally have the courage to tell my own story. It’s a little long, so bear with me.
Like many people on these forums, I have had a long and complicated medical journey, replete with bizarre conditions and neurological problems that no one has ever been able to explain. In fact I have always said that “weird stuff happens to me”. In my mid-20s, I began experiencing random bouts of gastroparesis (although I didn’t know the name for it). Since it wasn’t constant, I just chalked it up to digestive issues, which were becoming worse and worse. I was too young to research it and advocate for myself, I now know it is a classic sign of Vagus nerve dysfunction/compression. In my mid-30s my gall bladder stopped working. It wasn’t diseased, I had no gallstones, it just didn’t work (dyskinesia they call it, I eventually had it removed in my late 30s). Also another classic sign of nerve dysfunction, but no one ever said anything.
About 5 years ago I started having cognitive problems – brain fog, trouble concentrating, memory problems, and problems with executive functioning. My children were still home at the time and would get incredibly frustrated with me – I could not remember anything. When they would tell me something I started having them write it down because I just couldn’t remember.
Then the heart palpitations started – I would have random bouts of tachycardia/racing heartrate when lying down (every doc tried to tell me it was anxiety…but I had no anxiety whatsoever, it was just my heart fluttering and beating fast). In 2017, I went to the ER with severe esophageal pain – I was beginning to have random attacks of esophageal spasms and it was excruciating. I was given a shot of Zofran (anti-nausea medicine), within 2 minutes I went into V-fib and coded right there in the ER from drug-induced long QT syndrome (basically an arrhythmia). After getting my chest pounded and shocked a couple of times - I was tested and everything came back fine. There is nothing wrong with my heart – in fact the cardiologist said I had the heart of a 17 year old (I am an endurance cyclist and at the time I was training for a 100 mile bicycle race - Two days before I “died”, I had ridden 80 miles in 100 deg heat in Oklahoma). Like I said, weird stuff happens to me…I can’t make this stuff up.
Then the vision problems started, I noticed snow-like disturbances and after-images. Then in 2018 I got out of my car one morning at work and suddenly couldn’t walk. My right side was weak and partially paralyzed, I couldn’t talk or see out of my right eye. Everyone thought I was having a stroke and I was taken by ambulance to the big stroke hospital in the state. All CT’s and MRIs came back clear – the neurologist was incredibly rude and condescending. He diagnosed me with convergence disorder – it was basically in my head and in my chart he wrote that I had severe psychological problems. I was so frustrated that I never went to another neuro again until this past year – even though I would have random “attacks” of hemiparesis a few times a year. I just chalked it up as crazy migraines (weird things happen to me after all).
The visual disturbances continued, and the cognitive issues just kept getting worse. I started having headaches with a lot of pressure, I felt like my eyes were going to pop out of my head. Then in all hit the fan in 2020 when I had a bicycle accident. I went down very hard over a set of railroad tracks going about 20mph, I landed on my left side, separated my left shoulder, got a mild concussion and a mild case of whiplash. It rapidly went downhill from there. Within a couple of months I was basically disabled: headaches and pressure, pulsatile tinnitus, heart arrhythmias and chest pain, my body just started going haywire. Over the next year I had to take leave from work and couldn’t function: I bounced from specialist to specialist with a bizarre set of nonspecific symptoms. I was diagnosed with rheumatoid arthritis, then Lupus, then they were convinced I had MS (which was terrifying), then we were back to rheumatoid arthritis. It has been exhausting, I have almost lost my job and my relationship, and have been on the brink of suicide several times. And all of that time – no one thought to look at my neck.
Being the nerd that I am (I’m an engineering professor), I poured through every MRI and CT that I had. I researched day and night, chasing dead end after dead end (this drove my S.O. completely nuts). Then one day I noticed it – one of my post-contrast MRI’s showed a significant “flattening” of what I knew were my internal jugular veins. I wondered if they were supposed to look like pancakes, I mean, none of the radiology reports said anything about it. I began researching what might cause that and my whole world changed. I read article after article about extrinsic compression of the internal jugular vein and its symptoms – they might as well have been talking about me! After learning about elongated styloid processes, I poured over my CT scans, and sure enough! Both styloid processes are about 35mm and are directly compressing the carotid sheath against my C1 process. (The bicycle accident and whiplash most likely caused cervical instability that made the compression worse.) I have had symptoms of carotid artery compression, jugular compression and vagus nerve compression. Looking back through pictures, I noticed a significant change in the the way I looked over the last couple of years - my face is red and I noticed that my left eyelid would tend to droop a little.
I have made some ergonomic changes that have made life bearable, and allowed me to work full-time again. I just don’t look down - I have to keep my head in a very neutral, upright position. Anytime spent looking down causes a wave of nausea, dizziness, headache, head pressure, heart palpitations, brain fog and the visual disturbances and tinnitus get significantly worse. I finally got in to see an ENT - I went “armed” – and was so nervous. I tried to be incredibly polite and humble. I brought my laptop with the appropriate views of my MRIs and CTs up. She had never seen eagle syndrome personally, and had not heard of the jugular variant. She was actually wonderful and said that she would consult with her colleagues. I sent her two journal articles and she actually read them, talked with the others in her practice, and finally came back that it was a plausible theory and diagnosed me (tentatively) with the jugular variant of Eagle syndrome. They referred me to the ONLY doctor in the state that treats Eagle syndrome (Dr. Greg Krempl in Oklahoma City)
I am so relieved, and yet so angry. I have spent so many years trying to get someone to listen to me - I knew something was wrong and I was dismissed over and over. Even my family were to the point of diagnosing me as a hypochondriac and that it was all psychosomatic. To know that this is a real thing, and that there is an actual treatment fills me with a sense of relief that only others who have gone through the same thing can understand.
I see Dr. Krempl on Dec 20th, and am incredibly nervous as my experience with specialist has not been the best. I know this has been a long ramble, so thanks for reading through, this is the first time I’ve put all of this together and written it down. If anyone has had experience with this Dr. (he’s on the list posted on this site), please let me know!