Past member - Update w/ new symptoms

General
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Hi, all! I posted on here a bit three years ago when I was having severe pain in my right ear and a feeling of “swimminess” in my head. By the time I met with Dr. Bove at Northwestern, who agreed to removal surgery, the pain had subsided to the point where I decided to hold off on surgery. My styloids were 4.5 and 3.1 cm at the time.

While the ear pain has never come back, the swimmy head has stuck with me all along, some days better or worse than others. In the past three months, I’ve also developed some throat symptoms that are new to me.

In March, I noticed that my chest felt kind of tight all the time. I could get a full lungs worth of air with a deep breath, but it felt like there was resistance against it. Also, my throat started hurting with a sharp pain in the suprasternal notch (above sternum/between collar bones) when I would breathe in deeply.

In April, I decided to take Flonase (in case it was allergies) and Protonix (in case it was acid reflux). Three weeks later, those meds were havign no effect (which lead to a lot of anxiety) and the throat pain was only getting worse – pain in the suprasternal notch most of the time and my entire throat felt almost bruised. It started hurting to swallow, but the worst pain in the suprasternal notch was when I coughed or breathed in sharply. Basically any kind of disturbance would hurt that spot, including jarring exercises like running or jumping jacks, but also exercises where I need to tighten my abdomen, like planks or push-ups.

I’ve had several tests done with “unremarkable” results: cardiac, chest x-rays, covid, upper endoscopy, barium swallows, etc. It helped that a ton of bad things were ruled out so I have my anxiety mostly under control now.

My throat hasn’t been in as much pain this month (probably due to my anxiety going down), but the issue is still there. It still feels tight/bruised like it’s swollen inside. The pain in my suprasternal notch is still sharp but only when I take a deep breath or if clench my stomach tightly. My chest still feels tight all the time.

And my swimmy head has been especially bad these last few weeks. It’s hard to focus on anything. It’s to the point where I’m thinking about removal surgery again. Since I’m not in sharp or burning physical pain now, I don’t want to invite the pain of post-surgery nerve damage, but on the other hand, my throat and chest tightness and especially swimmy head are making it hard to keep going with any kind of normality.

As always, any kind of explanations, theories, or recommendations are welcome!

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We’re seeing more members with vagus nerve issues & learning more about the effects of styloids irritating it- one symptom it could possible cause is chest tightness, so that’s a possibility. It can also cause anxiety- BrooklynGirl had alot of nerve issues, it’ s worth searching the discussions & having a read up. I had the head swimmy feeling too, it did get pretty bad before surgery as I had vascular ES, but improved loads fairly soon after surgery.
I’d suggest that you perhaps have a fresh CT done to check if there’s been further growth, & also get it checked to see if the stylohyoid ligaments are calcified; as you’re getting pain further down in your throat it could possibly be ligaments causing that. If you have a CT with contrast, it’ll show if any blood vessels are affected which might help you make a decision about surgery. I had nerve pain, but felt that it wasn’t bad enough to outweigh the risks of the surgery, but when I got vascular symptoms I felt rougher & decided they were more of a risk staying in! Dr Bove has done quite a few surgeries on members, & the doctors list has been updated since then so there might be others in the area if you want another opinion.
Hope this helps!

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Hi fivetiger,

Jules gave you a nice, complete answer. I just want to re-emphasize what she said about symptoms outweighing surgical risks. When you get to the point, and it sounds like you’re close, where your symptoms are impacting your ability to live & function normally then it’s time to consider getting your styloids removed. I am very physically active & it sounds like you are, too. I had serious vagus nerve issues that caused my blood pressure to drop & my heart rate to rise crazily when when I did aerobic exercise. I would feel like I was going to pass out. I also had heart palpitations when not exercising. These are only “the tip of the iceberg” as far as my ES symptoms went but they were the scariest for me. Getting my styloids out stopped them in their tracks & I’m back to being as active as ever. I had my surgeries in 11/14 & 8/15 so can testify to the fact the results have been enduring for me. It did take a number of months after each surgery to fully recover, but I don’t consider it time lost as it gave back my ability to live the life I enjoy.

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Thanks for the quick response, guys!

I agree that getting a CT scan with contrast should be my next step. I had that done three years ago, and I could see that my right SP was pressed up against a vessel – which one, I’m not sure.

Which test shows blockage of blood flow – is that a venogram? Should I have that done prior to the CT scan? I don’t have any particular head position that makes it worse, so I’m concerned that nothing will show up on the CT. I also know that the timing of contrast injection determines whether veins or arteries are visualized. So, maybe I need to have some tests done before the CT…sorry, thinking out loud here.

Regarding the chest and throat pain, the vagus nerve idea is interesting. I had even thought it could be MALS (median arcuate ligament syndrome) where the celiac nerve plexus (which contains branches of the vagus nerve, among others) is compressed by an incorrectly positioned ligament across the spine, at the level of the solar plexus. That could explain why I get pain in my solar plexus and up into my throat when I tense my abdomen muscles, but then again, I don’t get the extreme stomach pain that most get with MALS. Anyway, just a new symptom of ES seems more likely in my case.

Jake

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Hi fivetiger -

A venogram studies blood flow so would indicate potential vascular compression via reduced blood flow in a given area, but it might not be necessary to have both the venogram & CT w/ contrast. I would do the CT first, & if nothing shows up then have the venogram done. Both tests use x-rays for imaging, & the less radiation your body receives the better.

I’m including an image of the vagus nerve below so you can see how extensive it is in our bodies (basically skull to groin). Watching the Two Minute Neuroscience video of the vagus nerve on YouTube would also give you good info. The vagus nerve affects a huge number of bodily functions which can differ in each person. I’ve had physical pain along the route of a portion of my vagus nerve from time to time as well as symptoms of the VN being irritated. I think there’s a good chance what you’re feeling in your solar plexus is vagus related as you noted.

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Thank you, Isaiah.
My last CT was taken with my head in neutral position while laying down. My doctors didn’t have any interest in the tip of my SP being in contact with a vessel, only that they were enlarged.
Should I push the imaging team to have my head in a certain position where vessels may be more compressed? I guess everything feels more crowded and uncomfortable when I’m looking down, reading for example. I try to keep my head level as much as possible.

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Hi fivetiger,

YES! Having your head in a “provocative” position i.e. the position that causes your vascular symptoms to flare/increase is vital to discovering what is being compressed. Even if there is a little compression all the time, you want to try to have it at the max for the CT scan. For you, it sounds like looking down is that position.

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Hi there. None of the eagle’s surgeons in US really care about that honestly including Samjii Cognetti and Hackman. I had an ultrasound with head in various positions. It showed right rotation caused substantial compression of right IJ with not enough compensation in left IJ when turning right. Samjii and Cognetti said they don’t use those tests and said the CT is enough to go on and your symptoms. The Barrow neurological institute disagrees and wanted ct venogram though some On staff said go straight to styloidectomy. So bottom line just get the ct and send it to one of the surgeons on the list. I’m probably the only eagle’s patient looking for PROOF prior to surgery but eagle’s surgeons all say the surgery is the test to prove your symptoms are coming from styloid.

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I also can’t look down and the surgeons all say that is classic eagles because your head is surrounded by bone! However rotation typically brings on neuro symptoms but head flexion is tough biomechanically. I found that Samjii understood the symptoms very well!

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Thank you for the info you provided in both your posts, Jenniferobel. Very helpful!!
I think you said in a previous post that you have surgery scheduled but would you please remind me of the date.

:blush:

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I keep postponing it. I want to see how the latest group of people do after a couple months post op. I’m still trying to strengthen and normalize my neck as much as possible prior to undergoing surgery. Again, the surgeons do not think that is necessary and felt that even with a weak neck, I could undergo styloidectomy and do just fine. Some think patients can get stronger easier after surgery because the spinal accessory nerve is then freed up. But my rehab position and PT want me doing more neck strengthening before surgery. I just remain very cautious given that I have Ehlers-Danlos syndrome and some cervical instability. I sometimes wonder if the calcifications serve to stabilize the cranium and are adaptive in a maladaptive way for Eds patients. I did decide to fly to the barrow and do the CT venogram with head movements and probably a CT angiogram with head movements probably in August. They have the greatest volume of patients with rotary disorders and do these tests routinely. My cousin, Michael Lawton, runs the Barrow and he is a vascular neurosurgeon. He however does not believe in Eagles. I think that’s made the decision making harder for me.

Have you heard of anyone that had their jaw pulled to the side of Eagle’s? My jaw deviates to the right which is the side of my 6 cm styloid and calcified ligaments.

This website has been wonderful with very thoughtful participants.

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If you use the search function to look for misaligned jaw, it’ll come up with a few mentions in other discussions.
A shame your cousin doesn’t believe in ES; there are loads of research papers on ES now, so not sure how doctors can ignore it, although I guess not all of them have tge time to read everything.
I hope that you can get your neck strong enough so that you feel confident for surgery!

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Hi Jenniferobel,

You could have a private conversation w/ Snapple2020 if you haven’t. She has EDS w/ neck instability & just had her first ES surgery a little over a month ago. She is well educated about EDS among many other conditions. Her information might be helpful in giving you greater confidence about having surgery sooner rather than later so you can start healing from the detrimental effects of ES.

That said, you do bring up an interesting idea regarding the longer styloid & calcified ligaments providing extra support in your neck. Part of the reason the body lays down calcium where it’s not normally needed is because of a perception by the brain that extra support is necessary in an unstable area. Unfortunately, that extra “support” often causes additional problems because it impinges on surrounding structures (nerves, vascular tissues, fascia, muscles, etc.). This is often the case w/ ES. Removing the extra “support” can be more beneficial than living with it, however.

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Thank you so much! I plan on private messaging her. My pt from Oslo wants surgery yesterday, Eds or not. My Eds doc says wait and get stronger. He says there’s no way I can get my deep neck flexors on with such a long styloid connecting to the hyoid bone because of my inability to flex my neck. So conundrum…

Having been burned by doing the wrong surgery once, it is harder for me to move forward. Plus I need to rest a couple times a day due to neck weakness.

We will see. Thanks a million.

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