Update & Questions

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I have booked an appointment for January 8th (first available) with Dr Teresa Chan-Leveno, University Of Texas Southwestern Medicine Center, Dallas (Otolaryngologist). She has virtual (tele med) appointments available, but not for new patients with ES.

I have some questions while I wait for this appointment.

I have been receiving speech & neurological rehabilitation for cognitive dysfunction, attributed to Long COVID and neuroinflammation. (I test positive for hs-CRP, regular CRP, TNF-alpha, D-Dimer, ESR.) I have quite a few neurological conditions going on. I’m wondering if Eagle syndrome might be contributing to it. I have: working memory impairment, executive dysfunction, anomia, visual processing difficulty, scanning errors with reading, sympathetic activation, post-exertional malaise, attention shifting issues, headaches, dysautonomia, proprioception,dizziness, pain/pressure behind left eye, unilateral neglect, internal tremors, etc. Any thoughts? I have other symptoms that I believe are associated with ES, such as it feeling like I’m swallowing glass when I sing, and turning my head causes several symptoms.

One of the treatments is using EMST and IA breath work (using special pressurized breathing devices). I noticed fairly soon after starting this treatment that I developed ear pressure. At first I attributed it to eustachian tube dysfunction, which I last had 20 years ago. I figured it was back, trigged by this pressurized breath work. Now I’m wondering if EMST and IA is not great for a person with Eagle syndrome. Any thoughts?

I was given exercises to do for sciatica. Some of them involve turning the neck. It’s uncomfortable, and even causes me to feel like…hard to describe. Maybe dizzy? Or fright/flight sensation. Now I’m thinking I should keep neck in a fairly neutral position until I see the Dr. Chan-Leveno. Any thoughts on that?

And has anyone here seen Dr. Chan-Leveno? I’d love tips to get the most out of the visit.

I will be seeing my PCP in a couple of weeks. Do you have any suggestions of what I should ask my PCP? (He is great at working with me if I ask for tests or treatments.)

Thank you so much for your help. I have many medical conditions, and because of that I’m in quite a few health-related support groups. This one is the best. Everyone is so helpful and kind.

Blessings,

Kathy (WillisWay)

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Hello @WillisWay welcome to this wonderful forum. I to have many neurological symptoms, migraines, trouble concentrating (brain fog), vertigo & tinnitus. I also have pain in Neck & throat that comes and goes, but one of my main symptoms is ear pain/pressure and my eustachian tube constantly popping, together with a strange pulling sensation at the back of my nose. I have just been diagnosed with Internal Jugular Vein compression caused by the C1 vertebrae and possible Styloid Process involment, which was brought to my attention on this forum and missed several times by medical professionals. How were you diagnosed with ES? Do you have a CT scan that you could upload here for other members to comment on maybe.

Best wishes Rosie

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Hi, Rosie! So great to hear from you. Sorry to meet over these circumstances, but glad we have this support! Recently I had another conversation thread regarding issues with my CT/CTA order and report, and the team here was great to help with my images. I’ll add three of them here. I was diagnosed with Eagle syndrome based on elongated/calcified styloid in 2013, but no surgery was recommended at the time. They did not follow up with the appropriate tests. But now I think I have some issues with jugular and carotid, as well as C1 vertebrae. I have an appointment with a specialist January 8 and hope to learn more. What is your plan regarding the diagnosis you have received?

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Oh excellent, yes I can see from your images that you also have IJV compression & ICA & ECA involment too, that’s a lot going on. I also have ECA involment, mine is wrapped over tip of my left Styloid. I had my diagnosis by Mr Axon (UK) paid for privately, but I am waiting to see him at Addenbrookes through the NHS. That’s going to be 6 - 12 month waiting unfortunately. It has been mentioned that I will probably require a C1 & Styloid resection on left at least. I did have a car accident 8 years ago and I believe this contributed to my left styloid growth and probably C1 issues. I am still not sure if my ear fullness and eustachian tube issues are to do with my IJV, ECA or Styloid nerve impingement. :thinking:. Its hard to work out what causes what. I have been told there is 85% chance of surgery fixing most symptoms and the other 15% is misdiagnosis.

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It’s frustrating that you have to wait until January for your appointment, but a few members have had surgery with her and spoke well of her:

Dr. Teresa Chan-Leveno surgery 7/5/22 and background - General / Eagle Syndrome Stories - Living with Eagle

Saw Dr Teresa Chan in Dallas today - General - Living with Eagle

I’m not sure how experienced with vascular ES she is though, I just wonder given your tricky position of your styloids if you wouldn’t be better to see one of the doctors more experienced with VES, but I think you said that would be difficult, or have I got that wrong? That’s certainly something to ask about at your appointment, if she’s able to cut the styloid back high enough to ease the IJV compression?

Certainly if the exercises are making you feel dizzy I wouldn’t do them, it sounds like it could be either causing the styloid to come into contact with one of your carotid arteries, or otherwise the vagus nerve.

It is difficult when you have other medical issues going on to work out what is being caused by what, and sometimes we don’t know until after surgery & seeing what resolves… IJV compression can cause intracranial hypertension, which can cause brain fog as @Rosie says, and some members feel that it’s caused cognitive impairment, headaches, dizziness/ off-balance feeling, pain behind the eye (carotid compression can cause eye pain too) & also head and ear pressure. I’m sure others have mentioned internal tremors too. So as well as the symptoms like swallowing glass sensation, it could well be that your styloids are very much involved with your neurological symptoms too.

I don’t know anything about the EMST and IA breathing, but from a quick look I wonder if it could increase head pressure temporarily like the valsalva maneuver? That isn’t great if you do have IJV compression & head pressure from personal experience!

It’s good that your PCP is supportive, I don’t think that there’s really any other testing which would benefit you as your scans show pretty clearly the styloids… Blood thinner medications can help with some of the compression symptoms, it depends how badly this is affecting you, and what other meds you’re on, whether they would have a negative interaction with anything else you’re on?

So probably best to be guided by your body with the exercises, and take it steady :hugs:

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I’m really glad you’ve gotten an appointment w/ Dr. Chan-Leveno. The only thing I’d add to @Jules post is that if you haven’t asked to be put on the cancellation list at her office, you should call & ask to be added. We’ve had members get their appointments moved up considerably by being on the cancellation list for the doctors they planned to see.

As far as your PCP goes, take copies of the annotated images you’ve posted above as it would be interesting to see what your PCP has to say about them.

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Thanks everyone! Yes, I’m on the cancellation list with Dr. Chan-Leveno. I have a question regarding possible intracranial hypertension/pressure. Is that something I could have tested prior to my visit in January, by having my PCP order it, or is it likely not going to need additional testing? I have read about dynamic imaging and also lumbar puncture to measure opening pressure. I’m weighing out having them done ahead or just waiting to see if those tests are ordered by Dr. Chan-Leveno. Ideally, I’d like to make sure I have all the information she might need to give a thorough consultation. But also, I know that some of the tests I’ve had, the techs didn’t do what was necessary to get the information I needed, so maybe it’s better to wait and have the specialist coordinate the testing.

Today at my speech/neuro rehab, my therapist agreed that I should discontinue Expiratory Muscle Strength Training and Inspiratory Muscle Strength Training due to the high pressure, and it being similar to Valsalva’s maneuver. I’m going to modify my PT home exercises, too. I will take the scan images you all helped me put together to my PCP appointment in a couple of weeks.

Thanks again, everyone!

Kathy (WillisWay)

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@WillisWay - It’s actually best to wait till you see the specialist before getting a bunch of extra scans or studies done as each doctor seems to have their own list of what they want. If for example, you get something invasive like a lumbar puncture then find out you really didn’t need it, & if there were negative consequences from that test, then you’d be adding another set of symptoms to those you already have but for no reason.

I’m glad your PT is having you stop the breathing exercises for now. You may be able to resume them once your styloids/decompression surgery(ie) are taken care of.

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