Hello, after suffering for roughly 20 years from this insanity I finally got a diagnosis and had surgery last week. I’ll share my story and can also give additional updates and information if anyone is interested.
Symptoms:
-strange feelings in my upper neck and head area, constant pressure, pain and feeling squeezed inside my head and other really unpleasant feelings
-constant dizziness, the feeling you get when you read something while driving in a car
-fatigue, was physically fit but my head was feeling so heavy and tired, could not focus on anything and just wanted to sleep all the time, but sleeping did not help
-strong headaches usually on my left forehead
-tightness deep in my jaw area
-sometimes pain and strange sensations in my throat
Story:
The Symptoms started in my childhood when I was around 10 years old and got gradually worse. At the beginning it was just some strange pressure feeling in my upper neck and jaw area, this got stronger and stronger and after a few years fatigue and dizziness started to occur, which really made my life hell. I somehow managed to get through school but when I started to study at a university I could not take those symptoms anymore.
At this point I began my journey to get rid of those symptoms, I went to every doctor possible to get everything ruled out, at first it was the harmless stuff like neck muscles or stress issues and later on I checked through every rare diagnosis. I was housebound at that point so I spent all my time searching through the internet, when I eventually found ES. I immediately thought that makes sense that could be it, although I did not have many issues with my throat, which is usually common in ES. So I ordered some X-Rays from my dentist where I could see the elongated Styloids. At first I thought I am almost there now but too bad I could not find a single doctor who knew even remotely enough about ES to help me. Most ENT doctors heard of it but thought it is so rare and since I don’t have any major throat issues it is almost impossible to be ES. So after another few frustrating years of trial and error I eventually reached out to a ES specialist in Germany whom I found on this website. I sent him my CTs and had an online appointment in which he confirmed the diagnosis.
Diagnosis:
Right side: elongated styloid process which presses on my internal jugular vein.
Left side: calcified stylohyoid ligament.
Doctors:
Nils Heim: he offers online medical consulting which is very useful if you do not have an ES specialist in your area, you just have to send him your pictures. Although he is a surgeon himself, at that time he did not perform surgery so he transfered me to his collegue dr. Markus Martini.
Markus Martini: He was the surgeon that performed the surgery together with Sarah Neering
Sarah Neering: Second surgeon
Both surgeons are highly specialized in ES surgery, they usually perform ES surgeries together, it is one of their routine procedures, they even developed their own technique. So far they never had any compliactions in a ES surgery, which I found very impressive. I can highly recommend those surgeons, they are both very friendly and highly competent. They are even conducting a study about ES, in which I gladly participated.
Surgery:
They removed the right sided elongated styloid process and the calcified ligament on the left side, they did both at the same time. They usually remove only one side and wait for the other one at least 3 months, but since I had a somehwat long travel time they agreed to try both sides if everything goes smooth, which it did.
After Surgery:
Had to spend 2 nights in the hospital, both sides were a bit swollen but nothing grave, took some pain meds to sleep those 2 nights but afterwards I could do without. Now 1 week after the surgery most symptoms have already improved:
Dizziness: Gone, disappeared pretty much the first day after the surgery.
Fatigue: Still present, today I felt a bit better but this might take some time.
Pain/pressure feeling: Better, I got some new pain from the surgery itself which is still present, so it is a bit hard to distinguish, but so far I can already say it is definitely better than before the surgery.
Headache: I got some minor “headaches” at the same place I got them before but much weaker and they only lasted a few minutes.
Since much of those sensations lasted that long and are engraved into the pain memory, it can take a while for them to completely disappear. The doctors told me it usually takes a few months.
Although I still experience some pain (probably partially because of the surgery) it is a different kind of pain and I feel like the first time in 20 years I can finally relax my body again which was almost impossible before since I had so many highly unpleasant sensations in that whole neck/head/jaw area. I felt completely tensed up, like being choked and squeezed, it was the worst…
I hope this nightmare is finally over, time will tell.
I wish everyone the best on their Journey.
I will give an update in around 2-3 months.