Feeling so lost in Canada (Intro post)

[anyothergirl]

Hi there!

I’ve always had frequent ailments, including migraines, TMJ, sore throats, gastric issues, etc. I was in a car accident in 2006 with untreated whiplash and concussion, and then in 2014 I blacked out and fell, hitting off a bathroom counter and tile floor, gaining a vestibular concussion. I did PT and the worst of it resolved but I was left with brain fog, fatigue, chronic pain, and dysautonomic symptoms. After an initial dx of “fibromyalgia with complications from hypermobility” in 2017 I was seen by an internist in 2020 who asked if I’d ever heard of Ehlers-Danlos Syndrome, and evaluated me for that. I left with a hEDS dx to explain the myriad alphabet soup of things going on. The issue is that after getting the fibro dx and then even worse after getting the hEDS dx is that no one will help me. I have an explanation, so why do I need to keep seeing anyone? I have no care team. I’ve cobbled together a physio, chiro [no manipulations, just active release and dry needling] and RMT to help manage symptoms, have a cane and a brace for every joint, and just do my best.

Here’s what I’ve been dealing with, which was all basically written off as just my hEDS: globus, dysphagia, neck/throat pain, limited ROM, tinnitus, headache, chest tightness and blood pressure spikes when I stand, disequilibrium especially if I pick my head up, vertigo, brain fog and executive function issues, fatigue, heat intolerance, temperature dysregulation, peripheral neuropathy… I honestly can’t even think of what all. Some of it IS the hEDS, I’m sure (dysautonomia is a common comorbidity), but despite numerous trips to the doctor for help with the worst of it (the brain fog, neuropathy, disequilibrium and vertigo) I’ve had few tests done. After needing a wheelchair flying home from seeing my sister, a walk-in doctor said he’d refer me to a neurovestibular clinic since I did have a brain MRI during the hEDS dx process.

So needless to say, I’m primed to think there’s nothing else wrong. Then I go to a new dentist and he takes a panoramic x-ray and blinks. “Oh, cool, you don’t see that often. Okay, do you have [insert symptom list]?” “yeah, but it’s just my hEDS?” He then points to what appear to be bones on either side of my neck and says “those aren’t bones!” The entirety of both my stylohyoid ligaments has calcified. He said based on being symptomatic and the clear bilateral imagery, I have ES, but it probably wasn’t too big a deal since I didn’t seem too bothered by the symptoms, but it’s more that I was literally told “you’ll get used to it” the first time I asked a doctor about treatment so I didn’t really think to say otherwise. He did however refer me out for the TMJ issues and I saw an orthodontist last month who took more scans. My SHL are, well, massive. The orthodontist has been in practice for over 40 years and seen ES before and even he did a double take and said “wow.”

When I got the panoramic x-ray I posted it as an amusement to my friends and one who had ES said I could ping her, which after the ortho’s reaction I did. She said I sound like a textbook case of VES in need of surgery. I also joined a group on FB and shared my images, where I was met with a lot of shock reacts and told I need surgery yesterday. I’ll post my scans when I have image privileges after being here longer. I’ll need more to get a full picture of how it’s impacting me - you can only see the bones/ligaments, not the veins or nerves or anything it might be (more than likely) compressing.

As someone who already had one not-super-common illness I wasn’t prepared for the jump from “oh check out yet another medical anomaly I have” to “yeah you need surgery immediately” and am feeling both terrified it’ll make things worse (with the hEDS) and hopeful that maybe it will relieve some of the bigger issues I’ve been having. They’re cancelling each other out emotionally and mostly I just feel weary that I won’t get anywhere. That said, doing research before I took my scans to my PCP I found Dan O’Connell, and as I live in Alberta, I just told my doctor I needed to see an ENT and I’d like it to be this one and she sent the referral in today. So my journey is just starting. I look forward to availing myself of this forum and thank you all for your help and support in advance.

[anyothergirl]

After an afternoon spend reading the forum, PHEW. Doctors just turning down referrals? Only doing intraoral when external is needed? Just sending people away, flat out? Worse, people having surgery and feeling the same or worse than before? I could cry.

[Isaiah_40_31]

Hi @anyothergirl,

I’m going to address your second message first as I think it’s important that you realize the more people are significantly helped by ES surgery than are left stranded w/ symptoms or feeling worse. Those who have successful surgeries leave our forum & often don’t come back to give us their good news. That leaves those who are still struggling who are the ones sharing their stories. I wish more people w/ great outcomes would at least let us know they’re doing well so our newer members could see the good success rate w/ ES surgeries.

Now on to your longer message. Your symptoms both from hEDS & ES sound awful & I totally applaud your dentist for recognizing that what he was seeing were styloids & then linked that to ES!! The fact you’ve got calcification from styloid to hyoid bone on both sides is sounds awful & does explain why you have such terrible symptoms. Your hyoid bone needs to be able to move when you swallow, talk, sing, breathe, cough, burp, etc., but yours is totally tethered by your styloids & s-h ligaments. Additionally 6 of the 12 cranial nerves run through the neck in the area of the styloids/s-h ligaments so when ligaments calcify, becoming bone & causing the styloids to elongate, those nerves can get quite irritated by having “bone” in an area that should contain only soft tissue. The nerves in question are the facial, trigeminal, glossopharyngeal, hypoglossal, spinal accessory, & vagus nerves. The vestibulocochlear can also possibly get irritated. Trust me, you’ll never “get used to it.” Getting those styloids removed is the only way you’ll get symptoms relief. There’s a series of videos on YouTube called Two Minute Neuroscience with a video for each cranial nerve. They’re super helpful in giving a snapshot of the function of each nerve & some symptoms of dysfunction. Here’s a link to one to get you started: https://www.youtube.com/watch?v=a-NCs1lOU5w&t=6s

Our other moderator, Jules, has written a series of posts which start ES Information. You can use the magnifying glass search tool above right to search for those posts. There are a couple of extensive ones about ES symptoms & vascular ES.

I would venture to guess that your fibromyalgia diagnosis is ES symptoms. A number of our members have been diagnosed w/ fibromyalgia & have had symptoms either completely disappear or nearly completely go away once their styloids/calcified stylohyoid ligaments were removed.

Dr. O’Connell has done ES surgery for several of our Canadian members & they’ve had good outcomes, however, none of them had vascular ES as far as I know. Dr. O’Connell uses the intraoral approach which, as you know, is not appropriate for vascular compression cases. It will be good for you to see him though, as he may be able to refer you to someone else for help. If not, would you be able to travel to the US for surgery?

As you noticed, our software does block new members from uploading new images until they’ve made a public post on the forum. That ensures the member is legitimate. I just checked & it looks like the system has updated your profile so you can post your images now.

I hope what I’ve written is helpful for you!

[anyothergirl]

Thanks so much Wendy! I read a bunch of the ES information series this afternoon! Thata a good point about others leaving.

I think @CJsBattle recommended Dr O’Connell to me and had an external procedure themself although I could be mistaken. Adding images here. I’m a US citizen but if AHS wouldn’t cover the procedure I can’t afford it.

[Isaiah_40_31]

Then let’s hope Dr. O’Connell can be able to help you. He seems to be a very accomplished & competent ES surgeon.

[Jules]

Goodness, they are impressive images! I would imagine you would feel much better for having them removed…I don’t want to be a Debbie downer, just to prepare you in case, but as the whole ligament would need removing right to the hyoid bone, I’m not sure if that’s possible intra-orally? Just a guess, but given that there’s not so much visibility with intra-oral it could be an issue…
I agree with @Isaiah_40_31 though that you do sometimes only hear the worst post-op stories here, and also we are getting more complicated ES cases on here- probably because instead of being dismissed by docs, patients can now do their own research, diagnose themselves and push for surgery. But there are quite a few members who’ve had C1 compression also, & that’s sometimes why surgery doesn’t work, if that makes sense? Unfortunately getting treated can be a battle, but is definitely one worth fighting!

[mekanX]

Hello and welcome to the forum @anyothergirl
I am so happy that you have found this site!

Wow you have really been going through this for quite some time. My heart goes out to you and I pray that you will soon find answers to what sometimes seams like and endless journey.

I was also in a car accident with major whiplash and concussion in 2017.
It felt like forever and only last year got a diagnosis of vascular eagles with my left internal jugular vein compression.
I was very scared of yet another surgery “I Need” and did not fully grasp the affects that this compression had and how it contributed to so many of my symptoms.
I have just had my styloid and partial ligament removed by Dr Hepworth this past September and I am still going through recovery. This operation has been a blessing to my life and I am so thankful that I went through it. I have seen many improvements in this last month and feel as if I have another chance to live my life.
This site has also been a blessing to me and has given me a lot of info that I may otherwise not have gotten. The stories from other members makes me cry quite a lot when I read about how people are affected and how long many of us go without the proper work up and diagnosis. At times I felt just so lost and the brain fog and confusion have not made finding or even understanding the possible answers easy.

I hope that you get to see some one soon that can explain the connections and solutions to the calcified styloids.
Wishing you the very best today
Sending a and

[anyothergirl]

Thanks everyone! I definitely hear you all about the intra-oral, I was under the impression that Dr. O’Connell also does external. I’ll need to get in for a consult (and likely more imaging) first to figure out what my options are, and I’m glad this forum can help prepare me to ask the right questions. I think getting a list of questions together will be my next step. Will poke around, I’m sure we’ve got some.

I don’t dare hope I might find a cure for my brain fog!

[akc]

I just wanted to give you another “woooow!” to those images along with empathy for the journey. I recognize the emotions cancelling each other out part very well. I fear the surgery that I have planned and sometimes want to cancel it. At the same time I long to be better. I’ve been pretty much out of it and having to be very isolated since late 2019. I was also in MVAs which were the trigger for me and have struggled with vestibular impacts. In fact I have such intense dizziness with movement around me (or sounds even!) that I am only save driving very limited routes (Those I know by heart, no rush hour, no highways). And the headaches…and the brain just not working anywhere near like what it did… It’s such a shame when Drs lump symptoms into a dx that someone already has instead of asking “is there something else going on here that might explain this?” and I am so sorry you’ve had to deal with that. And so glad that your dentist got you on the right track. So here’s to you continuing to learn more about your own body and finding the right surgeon who can do the right surgery and give you the relief that you very much need
Also @mekanX thank you so much for sharing on this thread about the positive outcome you’ve had. I hope my myriad of symptoms are at least significantly dented after my surgery… and brain garbage is close to the top of my list of hopefuls… a big dent in pain and please say goodbye to the dysfunctional brain and clear up at least a chunk of the dizzies so that I can drive properly again and be with other people and dare I say… a weekend city trip one day again?

[Danielle1]

Those are some impressive styloids! I had a bilateral styloidectomy (external approach) with Dr. Hackman on January 13, 2023. Please feel free to look at my surgery journey here. I posted pictures as well. Eagles surgery with Dr. Hackman changed my life. So many of my symptoms are gone after surgery. I did not have the classic eagles symptoms but I did have brain fog like so many here. My IJV was also compressed. My brain fog is gone. I had occiptal pain, front neck pain, TOS symptoms, head pressure, It felt like someone was driving a knife up into my head, I was nauseous alot (probably from the vagus nerve compression). I still have the tinnitus 24/7 that I had before surgery. I’m still searching for the cause. I believe the tinnitus is from Eustachian Tube Dysfunction.

Most docs only know and talk about the “classic” eagles symptoms. That’s why it took 28 doctors and 4 years until I learned to read my own CT scan and diagnosed myself to get diagnosed. I found Dr. Hackman from this amazing forum. My rt styloid was poking through my tonsillar fossa. I had no clue until I looked in the mirror from an image I saw online. I had no pain. No trouble swallowing, no tongue issues, A few times I felt like something was stuck in my throat but not often. I felt my styloids hitting my jaw on the right and hitting the transverse process of C1 on the left. I couldn’t do a chin tuck or hold my head in the right position because of the styloids. My styloids curved in the same way yours do.

The hardest thing about Eagles is that there’s no way to know what’s coming from Eagles until after surgery. However, imaging tells a story. Think about all the structures around the styloids. Cranial nerves, vessels (IJV), arteries, the muscles those nerves innervate (for example, the Spinal Accessory nerve (cranial nerve XI) innervates the sternocleidomastoid muscle which is responsible for the anterior neck pain I had before surgery. It’s gone now.). With the length and angle of your styloids, in my opinion, I can’t see them not compressing or compromising the structures around them. But that’s only my opinion. @vdm had very long styloids as well. I’d be interested to see what a CT scan with contrast would show.

[Isaiah_40_31]

I hope for you, what you hope for yourself, @akc. I will pray for that.

[Isaiah_40_31]

Thank you for sharing your surgery victory @Danielle1! I’m so glad your results have been very profound. I had a similar experience though it took two surgeries & almost 2 yrs of recovery to get there. You had the advantage of bilateral surgery that I wish I’d had! We’re so glad to have “discovered” Dr. Hackman through one of our members several years ago. He is definitely an asset on our Doctors List.

[Jules]

Here’s a link to the Newbies Guide section about surgery, there’s a list of questions to ask a surgeon in there:
ES Information- Treatment: Surgery - Welcome / Newbies Guide to Eagle Syndrome - Living with Eagle

[anyothergirl]

Thank you so much for your comment! The brain fog is by far my worst symptom. I don’t drive much at all either, with many of the same caveats as you. I also don’t drive at night, but that’s because my eyesight is too bad lol.

I haven’t been able to sit in a balcony at the theatre or even go out on some apartment balconies due to the vertigo since 2014. Since then I’ve also gradually become unable to sit in the backseat of a car without taking a motion sickness medication. Last month I needed a wheelchair at the airport because turbulence on the descent made the dizziness flare so badly. It’s likely a combination of things, but even eliminating part of that would make the rest more tolerable.

I definitely want to do more digging into vascular ES and the need for MVD post-syloidectomy, etc. to help manage expectations and have a fuller picture, etc. (I don’t know if I’m even using the right terms!)

[anyothergirl]

THANK YOU so much!! I appreciate this.

[anyothergirl]

Thanks so much for sharing. I’m so glad you’ve had relief!

This makes sense to me, and I’m so sorry you went through all that. The last time my physio tried touching my SCM I cried. I have the same opinion, that given how they look it’d be virtually impossible they aren’t impacting something, but I would love to get better scans. I told Wendy I can’t travel for surgery due to funds but if I get far enough along this journey and it seems needful I’ll figure something out.

I appreciate everyone taking the time to respond! (I’ll make fewer individual replies and tag more people in one long reply from now on, I’m used to, like, Reddit or Facebook style threads over a forum.)

[akc]

I don’t know how to do a hug emoji in here so instead with write out

[akc]

We can smile about these things when we see commonalities, even though it’s sad for each other. It was good in that strange way for me to see that you have the same driving restrictions. You are the first person I’ve known with whom I have that in common. I also needed a wheelchair a few months ago because the drive to the airport left me unable to walk (I had had a 5-day long episode of disabling vertigo spins that had only stopped 4 days prior though, so my system was still messed up more from that).
I also recognize the balcony (or rooftop)… anything involving looking down thing, without having something in the line of sight to ground me to where I am… I love walking in our mountains but as soon as we get to a spot or height where there are no longer trees or tall bushes on the side of the path that is dropping to tell my body what is up and down, I am no longer able to walk - my balance is just gone and my legs seem to freeze and tense up. If it’s a short part of a path I will literally hold my hands at eye level like blinders on the side of the drop to take it out of my view while looking intentionally at an angle to the “up” side until past that part. I can only do that if it’s short though… I literally think of myself like as a horse but with only one blinder instead of 2)
I haven’t sat in a back seat in so long due to neck and spine garbage, but imagine I could otherwise tolerate that. I’m sorry that yours seems to get worse in this regard instead of better.
I am hopeful that the styloidectomy and jugular decompression (make sure you know if you need the latter too; it will be all in the same surgery) will help with at least some of these symptoms. I hope that for you too. I hope that once recovered from the surgery you will find that your nerves are not nearly as reactive and therefore that your vertigo and vestibular symptoms are much much reduced.

[Isaiah_40_31]

Thank you, @akc. You made me smile . Sending back a hug emoji to you .

You can find all sorts of emojis by clicking on the smiley face in group of links at the top of the text box where you reply to people’s posts.

[akc]

Ah yes - reply in the group vs via boring gmail.
With that, I would like to offer you a and bid you good night