I am hoping for some help in this.
Fist I am wondering why all of a sudden in the last year I have many symptoms, when I didn’t previously. In 2021 I was diagnosed with ES, but since I had no symptoms there was no treatment plan started. Then about 5 months ago - BAM, one day literally
I woke up almost a different person.
-Pain when turning my head, feels like something gets caught behind my ear at the base of skull, and then vision goes weird for a few seconds.
-TIA-like episodes randomly (dizzy, heart palpitations, vision issues, numb right side, headache, followed by debilitating fatigue). Dr. did the ct to see if I was having strokes, but nothing.
-panicky like moments, here and there - randomly. But I’m not panicking about anything.
-random eye ball pain, like sharp stabbing.
-Temple and behind ear headaches that last days
-a lot of pain under my jaw/chin area, I think its called submandibular area? Like something is jabbing in there on both sides. I also can feel nobs on either side of my tonsilar fossa area, and when I press it hurts all the way up to my ear.
-Ear pain, like a loud thudding going really fast, and it hurts (like a gunshot going off in my ear that lasts about 30 seconds or so)…it hurts a lot. I think it might be ear spasm?
-DEBILITATING BRAIN FOG, I mean I cannot take it, I feel like Im in a different reality and not really here most of the time. Like life is in slow motion, and Im not really part of it (or like you feel when you have had like 4-5 drinks). This is the worst feeling.
-Lately, the last week or so, I have had pain at the front of neck in the bone near where the adams apple might be, and it feels like someone is pressing it, or choking me. And it gets worse when I swallow like windpipe is getting crushed. This started when I choked on my coffee and couldn’t stop coughing - then I had neck pain and some blood in my saliva.
-I have issues swallowing, like my brain isn’t realizing sometimes that I want it to swallow.
-constant ringhing in the ears, sometimes it goes SUPER loud and then I cannot hear anything else but the ringing.
-DIZZINESS or vertigo, sometimes it lasts days on end. I actually fell down the stairs 2 weeks ago due to it.
-started getting jaw pain that feels more like a ‘pucker’ feeling when you eat something sour, followed by release of saliva. If that makes sense.
My Dr. did a full workup and CT scan of the brain. Nothing found at all, other than high aldosterone. I have been retested and now its normal. I then remembered about the ES, and told my family Dr. I had a look at the ct images and ran it thought chatgpt who said that the images we do have clearly see how the calcification and between all images estimates them to be 5.5cm +. But she didn’t have them look at the neck area at all, for some reason. Just the brain so we don’t get a clear look at ALL the head and neck.
I am in Canada, and currently waiting to be referred to Dr. Fung in London ON. I am not holding out much hope as in Canada the process for this is bleak. I cannot afford to go to the US for surgery, as I cannot afford $50K.
Also I feel lately I can feel the bones when I move certain ways, like I can feel them in that area under my chin and I have a couple spots that feel like swollen glands but arent (I have had an ultrasound the other day). It hurts.
I feel that this is ruling my life, and I just want to feel better. I have attached my pan from dentist, but the one from 2021 looks more dramatic for some reason, thinking maybe the angle and just cannot see all the bone past other bones?
Is there any way to tell if there is compression anywhere in ct?
Any help or advice or any tips would be great appreciated. Feeling really defeated. Attached are the images I used to show my family Dr so she would refer me to a head and neck surgeon.
- Sorry, Im not sure what that is - it just pulled it out and said it was very dramatic so it freaked me out.
