Newbie Here! Been such a long road

Symptoms and Treatments
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Hi all!
My name is Monica and I’m both happy and sad to have found this group. So many people suffering but I’m glad I’m not alone.

For me, this all started February of last year, 2023.
After sleeping weird the previous night but not thinking anything of it, I got up to go get a snack when I was hit with the worst symptoms ever. It was pretty immediate. Dizziness that worsened whenever I turned my head, I could tell my vision was off, sinus pressure, ear pressure, felt like my head was being pulled to my left and I also could barely keep my head up, like my head couldn’t support itself, but oddly enough all the symptoms seemed to be coming from my left side.
Two months or so into the ordeal, I experienced a decrease in my brain fog symptoms but simultaneously started experiencing pressure in my throat and roof of my mouth that started to make me gag uncontrollably.

As the months went on, things improved slowly…not one thing helped except maybe massage. I went to an ENT, ER doctors, physical therapist, chiropractor, ophthalmologist, dentist and general practitioner obviously too. I’ve had an MRI done, sinus CT done, cone beam scan and I kind of said enough when they wanted to do a spinal tap on me.

And although I’ve experienced some relief from my symptoms nothing has ever fully gone away and I’m wondering if it ever will if I don’t address this.
I’ve suspected eagle’s syndrome for a while but I guess I don’t know where to start since every doctor I’ve been to locally has been entirely dismissive.

The symptoms I still have are a tightness of muscle tone and an intense pulling sensation in the muscles and tissues right below and behind my ear, causing dizziness sometimes. I still have sinus and ear pressure, and I still have throat irritation. It’s gone from a pressure sensation, choking, gagging to feeling like there’s something stuck in my throat. Can symptoms somewhat resolve themselves without intervention?

Anyways, very happy to have found this group.
I have some imagining that I’m suspicious of that is like to get y’all’s opinion on but it’ll leave that for another topic. Thanks all!

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Hi & welcome to the group! We’re both happy & sad to see you too, I know what you mean! Given your images on your other post & your symptoms I’d say it’s worth you pursuing an ES diagnosis…have you seen the Doctors list in the Doctors Info Section?

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Yes I have, thank you! I’m in Montana so could easily travel to both LA and or Colorado for Hepworth or Osborne. I know Hepworth is booked out. I’m more interested in getting a solid diagnosis. I’m so sick of doctors treating me like I’m crazy! Especially the ER doctors.

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You can get a solid diagnosis w/o traveling, @Monica. Dr. Samji in San Jose, CA, Dr. Cognetti in Philadelphia, PA, & I think, Dr. Osborne in L.A., CA, are all willing to do telehealth initial consults. Dr. Osborne doesn’t take many insurances & that has limited the number of our members who’ve seen him for surgery as his surgical charge is around $35K for one styloidectomy. He is an excellent surgeon though.

It’s good to get two opinions so you might pick two of those doctors to make an appointment with. Health insurance usually covers at least part of a telehealth appt. & will often also cover a second opinion, but you’ll need to contact your insurance provider to check on this. I know Dr. Samji’s telehealth, initial consult fee is around $650 for a 45 min. appt. but I’m not sure about the other doctors. I think that information is on this forum, & you can likely find it if you search for it. Being that you’ve had some vascular symptoms, it might be good to consider Dr. Hepworth, but I don’t know if he’s taking new patients right now.

It isn’t uncommon for ES symptoms to come, go, & change as time passes. I think most of us have experienced that prior to diagnosis & even after surgery during the healing process.

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I’m scheduling a consult with Dr. Osborne and am collecting all the imaging required to send to him so he can make an official diagnosis, which is amazing.

Thankfully, with my job I can afford Dr. Osborne if he’s a good fit for my case. I would like to get it done with Hepworth too but I read somewhere here that he’s not accepting new patients til maybe August and I don’t know if it’s safe to wait that long.
With that being said, the process is started and if all goes well, should have a diagnosis within a couple weeks!
@Isaiah_40_31

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I’m glad you’re able to see the doctor who’s your first choice, @Monica. Please let us know how your consult goes.

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@Monica, a quick note to prepare yourself for Dr. Osbourne in case your experience is anything like mine. He is not likely to say that based on your symptoms this is the right surgery for you but rather whether or not you are a good surgical candidate in general and that he can preform the surgery. He seems highly competent but left me wondering whether or not the surgery was the right choice for me. I think in part he was saying that he is not an expert on Eagle’s and won’t speak to the symptoms as they relate to surgery but he is an expert on removing styloids and can speak to that. He was the first surgeon I spoke to so I guess I was hoping for him to be a little more enthusiastic about the surgery giving me some relief. I decided not to pursue it with him because I think I need more than a styloidectomy to resolve my issues.

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Right now I’m just looking for a diagnosis and then I’ll see how long I can go with my symptoms. I’ll feel him out but thanks for letting me know. When did you meet with him?

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Hi,
I met with him last November. If you are looking for a diagnosis you might be disappointed. He is likely only going to tell you that he can remove the styloids if you want them removed. If pushed he might tell you that other people he has treated have had similar symptoms and feel better after surgery. I’m only saying this because I know how frustrating all of this can be and I want you to feel prepared for a less than satisfying answer on whether or not you have Eagle’s and will be helped by surgery. If it’s a definitive diagnosis you might consider a consult with Dr. Hui or Fargen. I hope it goes well for you and you have a good experience. When I consulted with Dr. Osbourne and then Dr. Samji I was in the same place as you. I was having headaches tinnitus and dizziness but I was managing it and just wanted to get more info. Then in January of this year I fell off a cliff with brain fog, head pressure and extreme fatigue and now I can’t have the surgery soon enough. I see Dr. Tobias tomorrow and Dr. Nakaji next week. Fingers crossed for both of us.

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@Chrickychricky I hope your appts with Dr Tobias & Dr Nakaji go well, keep us updated!
@Monica , I hope that you get your diagnosis soon from one of the doctors :pray:

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@Monica, The two doctors Samji & Cognetti whom I suggested earlier are good ES diagnosticians. You don’t need to have surgery w/ the doctor who diagnoses you. I didn’t.

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Hi all! Just wanted to update!
Today I had my consult with Dr. Osborne. I have officially been diagnosed with eagle’s syndrome on my left side. My right side is completely normal. He estimates my styloid is 4.5 cm give or take.
He wants to do my surgery and is confident in its outcome and said he thinks I could find tremendous relief if my symptoms, but to wait and weigh it against the risks and to call him when I’m ready. Wonderful consultation, got the diagnosis I needed and an option forward. So happy!!!

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That is most excellent news, @Monica! I’m glad you had such a satisfying appointment plus the offer of surgery. Dr. Osborne does good work. He would be a good choice for surgery.

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I’m pleased that you’ve had it confirmed and that he will do surgery if you want him to, that’s good news :hugs:

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You have definitely chosen someone with a lot of experience. I hope you get some relief soon!

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