I’m new here. Its my first post. I’m 26 years old.
I will try to explain myself and be as short as I can be.
More than two years ago (April 2019) I started to feel an odd pain in my left side of the neck. After Few days I remember I literally felt three is a bone in my throat that I couldn’t reach.
For 6 months I did all kind of tests, MRI, and more. Doctors said to me all kind of things, but none of them mentioned the syndrome. At that time, I didn’t know it existed.
Obviously. During this time I suffered heavily. My main symptoms were the feel of the bone in my throat that led to horrific pressure in my throat and neck, but the worst pain was when I spoke. I literally felt the pain gets harder and harder as I spoke. I had times over those 2 years I literally couldn’t speak for days-weeks, as the pain was so hard. It changes my whole life.
Generally, The pain was at degree of 6/10 for month, and then 10/10 for a month, for over 2 years. Over 2020, the pain became more long, and the waves of the pain became more often.
Approximately After a year from onset of pain, after multipole drugs and testes I tried didn’t help, Based on my description, the prof suspected I have the syndrome so told me to make CT scan, I have done so , and it showed that mu styloid on the left side of the neck is 3.6 cm [it also showed my right side is 3.5, but i felt nothing on the right side). based on this, and my description, the prof diagnosed mw with the syndrome.
At this stage (middle 2020), he recommended not the make the surgery as long as I can stand the pain, because he said it was so rare and the surgery a bit dangerous,
Since then, as I said, the pain became harder and harder, from March-Aprril 2021 I almost couldn’t speak at all. Therefore, I consulted with him, and we decided to make the surgery, he recommended the intraoral way, with the davincy robot which he was familiar with.
I was desperate to make the surgery as I couldn’t cope with the pain anymore. Nothing I did or tried in those years helped.
The surgery was scheduled 6 weeks ago, on June 8. technically the prof sait it went well. I stayed at the hospital for the first 5 days, as I was in immense pain and the prof and doctors said it is better for me to stay so they can follow my recovery. I also got special pain drugs there.
The The following 3-4 weeks also were very hard, immense pain all around my throat, tonsils and neck. I could barely eat, speak and swallow. I was a bit frustrated, But, I must say i did felt baby steps, and the prof said it wat natural healing so i tried to stay calm, and was hopeful it will get better. As days passed, I was able to eat more, and speak (still with much pain) a little bit more.
As I said, prior to the surgery. my main issue was pain came from speaking.
back to the recovery - after 4-5 weeks, this week I got back to work and started to speak a little bit more. In the last four days I have been feeling exactly the pain that I had prior to the surgery. Again, I cannot speak because of the pain.
I am in so much pain right now and so frustrated. I was sure that after almost 3 years of immense suffering, the surgery would give me my life back.
I have another review meeting with the prof this Tuesday.
I have read on the site that recovery can take a while (even read that the healing can take up to several months).
I am just desperate to hear from you, people who have been through what I have been, if the recovery of mine makes sense, and especially, if someone else felt the exact symptoms 6 weeks after the surgery, and it disappeared a while later.
I can stand the pain of the healing, but I am so worried that the surgery wasn’t helpful and the problem is not solved.
Thank you so much, really hoping for your help with this.