How do I make it?

[Ifrit]

Ten months since I became debilitated by my symptoms, seven months since I first started trying to get help for potential Eagle Syndrome, I finally have all the necessary scans either completed or scheduled and a follow-up appointment scheduled with Dr. Constantino…the first week of October.

It seems like given everything I’ve already been through and how much I’ve managed to stabilize since the total disaster I went through this winter, waiting another five weeks for answers shouldn’t be that hard.

But I am scared.

I can’t tell if it’s (completely justifiable) anxiety or a gut feeling, but I’m concerned I won’t make it to that point without things getting much worse.

It’s pretty clear to me that I’ve got some CCI/spine/shoulder issues that are driving the increased ES symptoms. My right shoulder, upper ribs, and neck have been off kilter for months, but all the Drs ever say is that my scans are fine and I should do PT. However, I can’t do most PT without aggravating my ES symptoms. So I’m walking around with something in there so spasmed or misaligned that the slightest stumble, the smallest bump in the car, is enough to cause a cascade of pain and increased instability. My driving is already so limited and I’m afraid I just need to stop, but then how will my kid and I make it to medical appointments when my husband can’t take any more time off to drive us?

I can’t turn my head or look down. I can’t do most cleaning, cooking, any of my hobbies, even reading is tough. I have to be propped up partially reclining with my neck supported so that I don’t drop my chin. I’m afraid I’ll lose it soon for that alone. I can walk, gently and carefully, in smooth, even areas I know well so that I don’t trip. It’s kept me sane for months. Sometimes I walk for hours.

Since last night I’ve had increased neck spasms on the left side, I think due to my body shifting around a lot since my PT started helping me with my posture. An hour ago I swallowed an extra large gulp of water and felt that tight left spot STRETCH. My heart rate spiked and then dropped precipitously. I don’t know how low it got because my Fitbit doesn’t keep up. It was really, really low.

I feel like I can’t be careful enough to prevent a potentially serious accident.

How do I keep myself safe for the next five weeks? And then after that, potentially for months as I wait for surgery, if Dr. Constantino thinks my stylohyoid calcification warrants it? What the hell will I do if it’s not my styloids?

My Dr. has nothing helpful to say, nowhere else to send me.

I had to get a note from my psychiatrist saying that I don’t need anti-anxiety medication, because that’s what most doctors were defaulting to.

As I write, my left arm is cold and partly numb, and has been since last night. But I know that no one can do anything about it. Whatever it is, I just have to live with it.

I just asked my kid if we could walk to their Dr. appointment later today because I’m afraid to even try driving after I took a speed bump just a little too fast on Monday and it messed up my neck again.

My kid is very reliant on me right now due to mental health issues. I can’t just make myself a cocoon until I find help.

The soft neck brace doesn’t work for me. I think it probably increases pressure on my nerves and potentially blood vessels. I’ve got mild scoliosis in the neck that makes it lean to the right, which I’m sure doesn’t help things.

I just don’t know what else to do. Stop taking stairs, probably. Try to pare down my driving even more. Eat methodically in tiny bites. Stop petting my cats unless I’m sitting down in a chair (sitting or kneeling on the floor triggers pounding and pressure in the back of my head). I have pretty bad ADHD. The chances of me just forgetting to be careful long enough to make a terrible tiny mistake are high. That’s how I got into this position in the first place. A few momentary, impulsive lapses in judgment that led to me getting really hurt.

I’m going to ask my kid to help me make a paper chain to count down the days until my consultation appointment.

EDIT FOR CONTEXT: my CT venogram confirmed that I actually have pretty small styloids, 1 and 2 cm. But I also have “discontinuous calcification” in both stylohyoid ligaments. You can see a gap in the scan that I assume is just ligament, and then big pointy chunks of bone after that. In my personal opinion, the calcifications are angled inward quite sharply, possibly leading to more compression than someone would normally experience with calcifications this size. The right looks like it’s close enough to an artery to potentially compress it sometimes.

[Jules]

I’m so sorry that you’re feeling so rubbish and for so long My symptoms weren’t as extreme as yours but I did feel pretty grim in the lead up to surgery & it couldn’t come soon enough for me, so I can sympathise with you…

It sounds like it’s been a battle for you to be taken seriously by doctors, and that must be exhausting- I agree that the scoliosis in your neck must be making things worse, have you had scans and investigations into CCI too?

Wearing a soft collar is something we would usually suggest to help not moving suddenly, but you’ve obviously tried that. I can’t really suggest anything else, other than what you’re already doing, limiting movements as much as possible, and understandably that’s hard for you with ADHD as well… How helpful is your PT, do they know much about ES? It might be an idea if you give them this article to read about ES & PT, co-authoured by one of our members, as you don’t want to make things worse:

WESTBROOK et al. (2020) - Eagle’s syndrome, elongated styloid process and new evidence for pre-manipulative precautions for potential cervical arterial dysfunction – Doctor info and research article - General / Research Papers - Living with Eagle

I think others have had surgery fairly quickly with Dr Costantino if he agrees that it’ll help you. As you’re needing your husband to perhaps drive you to appointments, would a cancellation appointment not be possible? Some members have got in sooner by being put on a cancellation list.

Sending you a hug, and praying that you’ll be okay while you wait

[Ifrit]

Thank you. Dr. Constantino’s office said they’d put me in sooner if an opening came up, but he’s just not going to be in his office for most of September.

It was actually a PT making things worse back in January that led me to find ES online, after she thought C1 or C2 was out (may or may not be) and tried pushing it back in. While I might wish she hadn’t touched me, if she hadn’t made things worse I probably wouldn’t have found out about ES and could have continued in the same worsening cycle of injury and mysterious pain I’ve been trapped in for over 10 years, so small mercies, I guess. I will give this article to my current PT. She’s not touching me or having me do anything with my neck at all. Just working on postural stability by standing on a slightly wobbly cushion. She has a specialty in Ehlers Danlos Syndrome, which I also have, so that helps.

[Jules]

I’m glad that your current PT is experienced with Ehlers Danlos , EDS does explain perhaps the instability, we’ve had quite a few members with both . So hard for you, a shame Dr C is going to be away for September

[TML]

@Ifrit a couple things. I find PT sort of hit or miss with ES. Our bodies and subconscious brains are incredible. When something is happening in the body (unbeknownst to the individual) the body will start compensating to best live with the threat. So in other words, your body has learned to compensate with elongated styloids. This means your body has probably found the best muscles/posture compensations to best reduce the negative impact the styloids have. PT may work for some, while for others, it just forces them away from the best posture they have developed to best compensate for ES. So that’s something to think about.

Second, can we get a look at your hyoid bone? The axial view of the imaging is best. I want to make sure your greater horns aren’t digging into anything. I’m suspicious based on your symptoms.

[Isaiah_40_31]

@Ifrit - I don’t know if he’s booked any less far out, but Dr. Coniglio in Rochester did a successful styloidectomy/IJV decompression surgery for @CoHDa. You could see if you could get an earlier appointment with him just for an opinion if nothing else.
•Dr Coniglio, Rochester, John U. Coniglio, MD | Rochester Regional Health does hyoid bone surgery & works with Dr. Taka Higashimori for VES and C1 shave, also does hyoid trim if needed.

I’ve annotated the images you posted above. It looks to me like you may have IJV compression bilaterally from the chunks of calcified stylohyoid ligament & also possibly external carotid artery (ECA) compression at least on the right side. That would help explain why your symptoms are so terrible.

I’m sorry I don’t have anything to suggest for how to manage either. I think you’re diong an admirable job of taking care of yourself & your son. This is a terrible situation for you. You could try taking a baby aspirin (81 mg) each night as that works as a mild blood thinner & it could give you some relief from your vascular symptoms. It would be best to make sure it won’t interact with something else you’re taking especially if it’s a blood thinning medication. Icing your neck & sleeping w/ your head/upper body more upright could also be helpful if you aren’t doing that.

I hope you were able to walk to the doctor w/ your son this afternoon & the weather was good. I know how rough it is to feel so physically limited when you’re an active person. I’ve been there & done that. I will say prayers for you to have confidence that you’ll make it to your appt. w/ Dr. Costantino in Oct.

[TML]

@Ifrit the axial view will help you see if your styloids and/or greater horns are in direct contact with your IJVs, ECAs, and ICAs.

I can help you locate the important areas, or if you’re comfortable with it you can private message me a google drive with your imaging. Happy to help.

[Ifrit]

I’m afraid I don’t know how to get a really clear view, but I sliced this up using RadiAnt.

My throat on the left side has been awful ever since my (former) PT pushed on my right side to “put my neck back in” in January. Things were bad before that, but that’s when the spasms on the left side started. That’s when I started to seen my external jugular periodically, mostly on the left. I hear and feel clicking and popping, even a ripping sensation there when I swallow sometimes. The muscle under my chin on the left sags and you can see some of the skin pulling at an angle. My tongue doesn’t work as well on the left side. I found what looks like small calcifications in the left legament that extends from the back of my hyoid to my thyroid cartilage. You can see one in this shot. It’s not clear, but even though it looks from this photo like my hyoid is pressing into a blood vessel on the left, it’s not. There’s a tiny bit of clearance between them.

I feel like it’s just been getting worse today. It’s more sore. CBD and heat aren’t helping.I get sick and have low blood pressure without eating, but I’m afraid to swallow because I can feel it tugging.

Thank you.

[TML]

Are you able to upload the axial view of it in the original CT imaging? It’ll look something like this:

[Ifrit]

Thank you.

I originally tried to go to Dr. Cognetti. He’s way closer to me than Dr. Constantino. However, I was told that he wasn’t handling Eagle Syndrome any more, or he’d moved. I don’t remember which. I’d meant to inform this page so that he could be taken off the list.

[TML]

That’s odd, I have a ES consult with him this coming January

[Ifrit]

This took me a bit of figuring out, because I just couldn’t get the whole arch of my hyoid in the picture. Then I realized that in the 3D renderings, I’ve been puzzled because my hyoid bone seemed uneven or twisted. I think that looking at these different slices shows it really is uneven! I fired a shotgun on the right side last year and my muscles didn’t kick in, sending my shoulder back and my neck to the side. That could have reasonably done something to my hyoid, and then my PT could have made it worse when she pushed near there. .

The green arrows point to my hyoid bone, the blue one points to what I’m pretty sure is the calcification below my left hyoid.

[Ifrit]

Oh now that’s interesting news. It sounds like I should call tomorrow, because whoever I spoke to earlier this year may have been mistaken or something might have changed.

It sounds like we must be near-ish to each other too. I’m in the FLX area!

[Ifrit]

Wait, I got names mixed up. It’s Dr. Conglio who I was told wasn’t seeing people for ES anymore. Dr. Cognetti is different. Sorry about that.

[TML]

@Ifrit all looks good here. Completely normal for carotids to run along beside the greater horns. Also very common for hyoid to be slightly off center and to have different length and angled greater horns.

See attached my imaging showing my left greater horn in direct contact with my carotids, in the area of the carotid sinus nerve. I’ve collapsed a few times due to simply swallowing food. Blood pressure and heart rate drops since the nerve regulates those.

I’ve also attached below a research study showing normal/prevalent hyoid-carotid relationships seen in large samples of healthy people. Yours seem to be normal, at least what I’m seeing.

I suspect your calcified stylohyoid ligaments are the main culprits of your symptoms.

[TML]

I’m from Nova Scotia, Canada!

[Ifrit]

I’m so sorry you’ve had to deal with collapsing from swallowing, and more than once too!
I’m glad my hyoid doesn’t seem to be in an abnormal place. I think I’ve got enough to deal with. That means you’ve got problems with both though? That’s very tough.

My grandparents were born in Manitoba and Alberta. I’m living in New York state, which fortunately gives me access to lots of good medical if I drive 6 hours.

[CoHDa]

Hi @Isaiah_40_31 and @Ifrit,

I’ll jump in here with my two cents since I was tagged. I can’t say that I would recommend Dr. Coniglio or Dr. Taka if what you’re looking for is a hyoid trim or a C1 shave.

Dr. Coniglio had not heard of a C1 shave as part of the surgical treatment for ES and was very leery about performing any such procedure. As for removing part of my hyoid, we had not discussed the possibility prior to surgery. I just woke up in recovery and was told that was what happened incidentally to the styloidectomy. Am I happy the styloid was removed? Absolutely. And the hyoid? Not so much. There are some outstanding questions about what role the removal of a section of my hyoid now plays in new symptoms that have developed post-op.

As for Dr. Taka, if you need someone to perform an invasive angio and really take a good look around at what you’ve got going on in there - before someone takes a scalpel to your neck - he’s your man. To be clear, he raised an eyebrow when I mentioned a C1 shave. And as an interventional vascular neurologist, Dr. Taka is not going to trim anyone’s hyoid. He’s the doctor who’s going to look at your imaging and catch all the red flags that every other doctor missed, at least, thankfully, that’s been my experience to date. It’s also a huge plus that he’s one of the nicest people on the planet that you’ll ever meet.

There is one other doctor in Rochester that I wish I had consulted before I scheduled surgery with Dr. Coniglio. His name is Dr. Matthew Bender. Though it was in April of last year, I seem to recall having a conversation with someone in his office, who told me that Dr. Bender has treated patients with Eagle syndrome. Even if he hasn’t, his bio and recent publications make it clear that he can probably decompress a jugular vein or carotid artery in his sleep. In fact, I probably should have him take a look at my neck to see if he can diagnose what’s developed post-op, since Coniglio could not.

Anyway, I think it was something about Dr. Bender during his time at Johns Hopkins or maybe it was one of his publications that referenced someone/thing relevant to Eagle syndrome that made me pick up the phone and call his office. If I could go back to March 2024, I’d consult with both Dr. Bender and Dr. Coniglio. Maybe I still would end up scheduling surgery with Dr. Coniglio. Who knows? But then at least I wouldn’t feel like I took who I could get, because I was so desperate for relief.

I hope this bit about my personal experience helps.

All Best,

C.

[Ifrit]

Thank you for sharing that. It’s very helpful. I’m just two hours away from Rochester, and I’d called Dr. Coniglio’s office this spring. But I was told he isn’t doing Eagle surgery any more. Sounds like maybe that was a good thing. I would rather wait in pain extra months than end up with surgery mistakes. I’m so sorry that you are dealing with complications.

[Jules]

He has done some successful surgeries for other members, so it’s a shame, but maybe it’s just not the best choice if you have vascular ES…