Does anyone have the symptom of one cheek and same side ear- hot and red? Strangely, or not, it coincides with my pressure headache worsening and increased dizziness. (I also have Intracranial Hypertension, "hopefully" related to the styloid compressing my jugulars, though I already have a shunt...)
This is NOT my main symptom, just very curious, as this is a new symptom on the right side, my left being the VERY symptomatic side I am having surgery on soon.
I am told the right also is a problem- which I can totally believe from the imaging I have had. I want both of them yanked!!
I used to have heat on my left side (cheek and ear) before I had my left side surgery but it never actually turned red though! I'm 5 1/2 months post op now and I can't even begin to explain the impact the surgery has had on my life!! Everything, I mean everything is gone from my left. The burning. The pressure. The headaches. I can feel circulation moving up through my carotid and jugular now. I had trouble sleeping after the surgery, not in a bad way but in a good way. I actually felt energized when I woke up, like I actually slept as opposed to before the surgery when I'd wake up on total empty like a zombie :/
As far as the dizziness goes though I'm afraid I can't share any experience there because I'm dealing with another condition in my inner ears that deals with vertigo and migraines. So I'm afraid I can't distinguish between the Eagles and the other condition. So in a couple of months the ENT that did my first Eagles surgery will take my right styloid and when he's done with that another ENT will go right in and do what he needs to do to my right ear!
When is your surgery? And will it be for the left side? Keep us posted! My only suggestion is to try to keep your jaw, tongue, face and shoulders as relaxed as possible. Try to keep your mind focused on staying calm, relaxed. You are much stronger than this Eagles condition! Breathe. Remember to breathe. You will defeat this. We are here to help :)
Thanks so much for your reply! When my brain pressure feels really high (despite the shunt) my entire face gets flushed along with the headache and estra dizzies. My health history is very complicated- I have Ehlers Danlos Syndrome, my neck is fused from skull to C2 and also C3-6. Other stuff too from the EDS. Now Eagles and jugular compression may explain the high pressure, according to a couple of very educated neurosurgeons on my conditions.
I feel like I am being choked on the left side and also my hyoid bone dislocates when it gets this bad. I have to physically gently maneuver it back in place. The choking at it's worst is accompanied by the increases brain pressure symptoms.It just has to be related- or I am just that desperate for it TO be!
I had been previously misdiagnosed with Meniere's Disease and Migraine Associated Vertigo.
My surgery is still not scheduled. The ENT is going to contact one of my neurosurgeons to discuss, but he said he will do left side first, since it is so symptomatic, then later, the right side.
I saw Dr. Cognetti as well and he is also willing to do surgery. Said my symptoms and imaging are classic (not the brain pressure ones though,,,) and the base of my styloid on the left is the thickest he has seen.
It is great to hear your success!! Glad you are feeling so much better.
Wow! You and I sound so much alike! I am Hypermobile Type III (my diagnosis of that came one year before my Eagles diagnosis) A tmj doctor recognized I had a forward head posture and then they did further testing for hypermobility in rheumatology. Then one thing finally led to another then my 20 year quest to find what was causing my pain was discovered with the Eagles. After the surgery it set off all the vestibular symptoms and ENT looked into Meniere's but a scan of the temporal region of my skull revealed Superior Canal Dehiscense. I was like, "Are you kidding me?" The chances of that happening are like the chances of having Eagles...So...Like a brave warrior...Anything is conquerable! (Is that a word? :)
From what I hear, you're in excellent hands with Dr. Cognetti!! What are some of the things you do in the mean time for fun? What do you find is best to help get you through the times when you have an attack of "the dizzies" or feeling flushed?
No way!! I am Classical EDS, as are my children.
I was also eval for SCD by Hopkins when the Meniere's Diagnosis was put into suspicion. Then my long term Oto-neuro "un" diagnosed me- and I felt I never had it to begin with.
Also a 20 yr search with me. I was just awarded disability. I used to be a microbiologist. Also- we just adopted a puppy! A ten month old Shepherd-Weimaraner mix. She is the best! Keeping my mind busy with things other than my and my children's health problems.
Congratulations on all of your successes! You're a remarkable individual! I've recently applied for disability too and realize it could take forever and that's okay :) My daughter just started college and is in good health thankfully. I keep busy helping people at the Native American Indian Center in Columbus, OH. Hopefully I can eventually return to work in the medical field, which is what I really love the most. I initially entered the medical field in 2003 so I could learn anatomy and physiology so I could try and figure out what was wrong with me. I was 10 years into my pain and figured if the doctors couldn't figure it out, I WOULD!!! In '08 I stumbled across Eagles and brought it up with a neurologist. I got the "You're just a paramedic with an overactive imagination" response. Who's laughing now eh? I'm not bitter, trust me, joyous to be in the solution today! And like you- keeping busy with other things other than my health problems. Thank you so much for sharing part of your life and your experience with me today Kitty9309. It has helped make it a brighter day and a more hopeful day :) Smiles to you :))))
Superior Canal Dehiscense, that is a new one for me. I just looked it up. I too, have a rare issue other than EAgles, but definitely not that rare.
Hoping you both get the help you need and get back to normal
Thanks Emma for the well wishes! And well wishes in return for what you're going through too!!!!