Hi, I’ve been on and off this forum for probably 7 or so years. I’ve had two surgeries to resect my hyoid bone and thyroid cartilage (I may get into that more in another post re my ENT who did two surgeries on me, neither time doing what we agreed, I don’t believe the man knows what he’s doing and now he just ignores me).
Anyway, even if he had done we what agreed, I don’t expect it would have helped. I have no idea what’s going on in my throat. It’s not just a basic case of thyroid cartilage catching on hyoid done. That was happening and causing clicking in the throat but that was never my real concern. I wasn’t fussed about clicking in the throat but about the inability to get a proper swallow that would elevate the throat structures normally and push food down the throat normally. Instead I just a clenching/blocked movement in the area when swallowing, as if things cannot move upward/backward. Getting food down is now very difficult and feels dangerous much of the time. I had another CT scan and noticed my epiglottis is now showing as calcified around the edges.
I just don’t know what to do or why any of this is happening or where this is even going to lead if my epiglottis that protects my airway during swallowing is essentially turning to stone. There’s not one consultant I’ve come across competent enough to have any ideas of this either and i’ve seen basically everyone in the UK. He just agreed to trim some things away based on my conclusion and he couldn’t even do that properly.
My whole throat and neck are fked. I’ve got obstructive sleep apea now. My throat / airway is evidently narrowed. I’m basically housebound due to headaches, head pressure and various other related symptoms.
I don’t even know why i’m posting. Utterly pointless.
@Callmestar1 - I’m glad you’ve updated us and am terribly sorry that your report isn’t positive. You’ve been here for such a long time & been through too much not to have had some sort of benefit from your surgeries. That’s devastating news!
I encourage you to not to give up. There must be someone in the medical field who can help you, it’s just been a very long journey for you to find that person or those people.
Several of our members from the UK, US, Canada & even India have gone to Turkiye to see Dr. Kamran Aghayev as he seems to understand ES & other problems w/ the internal neck very well. He does telehealth consults so you could meet with him initially w/o having to travel.
•Dr. Kamran Aghayev - https://kamranaghayev.com
Another option would be to have a consult w/ Kjetil Larsen who is quite knowledgeable about ES & other related neck & throat problems. He’s not a doctor yet but is in his last year of medical school. I believe he was some sort of medical therapist prior to going to medical school.
**Not currently a qualified doctor, but Kjetil Larsen has written numerous research articles about biomechanics, IJV stenosis etc and has helped several members with interpreting their scans. Appts are only available online currently: Home - MSK Neurology
I’ll pray for you to find a doctor who is knowledgeable about your current scans show & can help you get on your way to recovery.
I am so sorry that your surgery didn’t help & you weren’t given the agreed surgery, so infuriating, especially paying privately…have you been up to making a complaint?
I’ve not heard of the epiglottis calcifying, have you spotted that or did a radiologist notice? There are some research papers about it, but unfortunately not very helpful in terms of treatment: Calcification of the epiglottis presenting as foreign body sensation in the neck - PMC
It mentions parathyroidism as a possible cause, do you have any symptoms of that?
Sending you a hug
I go through same frustrating bs. I wish I could take away everyones suffering and create a healthcare system where you dont have to go to DR. Insurance for permission to get proper care. A system where doctors are part of a team with you and they are not worried about Dr Insurance or being sued.
A system where your pain, struggles and quality of life are taken seriously.
Hope u feel better .
