Hi everyone! 28F in Minnesota. Timeline summary is basically living life as normal with issues → getting adult insurance and thinking I should check on things → dentist told me to get tonsillectomy and ENT performed the surgery → complications but throat swelling is much less and uvula shrunk in size → mother got eyelid surgery and I know mine are heavy so went to get my eye checked and here we are.
I’ve grown up having headaches off and on more so in the right eye than the other. Rarely are they debilitating, but usually I do have to nap to get them to subside. It’s more so a dull pain and I feel a tightness down to my jaw under my ear. Slight pressure. They diagnosed me with migraines at a young age. The kicker is it’s usually one sided behind my right eye (a great grandmother had cluster headaches). I also have a droopy right eyelid and not many notice as I compensate by lifting my eyes all of the time. I was fine living with it but wanted to make some changes in my life before I get older (eyelid and tonsils specifically).
I have also always had Level 3 tonsils, but never strep throat and so my tonsils were not taken out as a kid. My dentist told me to get them taken out, actually, due to the level of bacteria caused by large tonsils, and it blocking my airway. I was getting tonsil stones the size of small hail and choking and had so many cavities despite little to no plaque at each visit. Right before my tonsillectomy I had a CT as I have off and on swollen neck lymph nodes and the radiologist pointed out elongated styloid processes up to 4.4cm. Worse on the right side where most symptoms are. Their notes said “test for eagle syndrome” but my ENT did not test for this nor even acknowledge it. He also retired after my surgery (no shame in that).
X-Ray from Dentist:
August CT Scan and Results:
As soon as I got out of my surgery I felt like I could breathe better (wooo!) but I also noticed my taste was off and not just from the cauterization. Things tasted so sweet for 6+ months and still do at times but pretty much normal now. I developed severe alternating anisocoria and mydriasis. Looking at past photos; the anisocoria was most likely always there but very subtle. An Ophthalmologist stated I had a long term silent migraine. I do not think this is the case.
Another issue that arose after surgery was tachycardia and faint feeling. Having to pass out after doing anything for 3+ hours and being so deliriously exhausted it was hard to move. I had this off and on perhaps due to anxiety but this was every. single. day. My blood pressure was spiking randomly to Hypertension II while sitting and would otherwise return to normal. This was written off as an ADHD med side effect and anxiety despite the fact that I have taken ADHD meds since I was 7 years old with no complications at all and rarely have I had a panic or anxiety attack let alone daily. My resting heart rate went from 72 to 86 with random bouts of tachy. I got put on a beta blocker and that has helped immensely. This is still a mystery to me.
Flash forward to now, 7 months later, and I saw a surgeon for a consult on my eye ptosis and he took measurements and became concerned. My right eye has ptosis, miosis, antisocoria and is sinking into my face. My pupils are throwing everyone off. He referred me to a neuro-Ophthalmologist professor at the University hospital to be tested for Horners Syndrome. Still waiting for this appointment. Note that sometimes the right pupil (with ptosis) is the bigger one!
May CT and Results:
In the meantime, I received a second CT with dye and this radiologist said NOTHING about the styloid processes. He also cannot see my eye sinking down or back despite it being measured that way in person. I have attached photos for reference. I have the two full CT scans and can show them if need be but I am not sure where to screen shot in the hundreds of images they provide… thank you ahead of time!
Does anyone have any idea what is going on? Any similar stories?
Reposted with photos.
