New here, and looking into treatment PNW

Symptoms and Treatments
1

Hello everyone, I am new here, and thanks so much to the mod for sending me a good message with lots of information. I started with some right jaw tenderness which I thought was weird about 2 weeks ago now, then it started to go up to my right ear and into my right tooth line. I thought it was TMJ issues so I went to the dentist and she felt around, made me move my neck this way and that, ‘expressed’ some glands and then said, so I think you might have something called eagles syndrome, look at these calcified tendons on this xray. I was confused and a little scared. I was diagnosed with myathenia graviz when I was in nursing school about a decade ago, so I knew what a new diagnosis felt like, but I had never ever heard about this one.

Then I started to have more jaw pain, head pressure, especially on my right side, but sometimes on my left and also went to the ER for heart palpitations. I desperately looked for answers and found this site and have been reading and researching. I am about to go on medical leave because the head pressure is so much, that it hurts to think for long periods of time, it feels like a pressure up in my eyebrows and at the top of my head, again mostly in my right, but also to the left. I found that laying at an angle or even flat sometimes helps, but not always.

When I went to the ER I asked them to do a CT, and they did one without contrast and a CTA with constrast, but nothing where I was moving my head around. They did find that my stylohyoid tendons are definitley calcified, but said nothing about how long my styloid process are, and said that my carotids were all flowing freely (again, this was laying straight down looking up). I have a feeling that my internal jugular vein(s) are compressed with my symptoms.

I have an appt with my nuero next week (he’s already sent me back a mychart saying that I might not even have eagles syndrome, so not looking forward to that), Ive seen my PCP, who was confused on what to do so she gave me gabapentin ( i havent started it), and I have an appt with PDX ENT Dr. Patel, but not until Nov 30. I have also requested the CD from my CT and CTA from the hospital so waiting on that.

I saw that many people had great luck with Dr. Liu, so I have sent a message to his office, but I am just overwhelmed and this sucks. I feel like I have lost some of my life, especially since I will have to be taking time off work and dont know how long I will have to. And knowing that Oregon sucks for having any doctors that work or know about this. Thanks everyone.

3 Likes
2

Hi & welcome!
You’re doing the right things for now with getting a CT with contrast, and requesting the imaging. When you get it, we’re happy to have a look for you (although we’re not doctors on here), the only possible snag is that sometimes when a CTA is requested they just take images of the arteries and don’t always take images of the veins, so if your IJVs are compressed, it might not show. A CT doesn’t always have to be dynamic to show compressions though, so don’t worry about that. And sometimes if there’s a really small gap between the IJVs and the C1 processes even if the veins aren’t showing, it points to the likelihood of IJV compression… The vagus nerve lies in the same area as the IJVs, so if they’re compressed then often the vagus nerve is too, which could be the cause of your palpitations, and the head pressure is common with IJV compression…
If you’ve not read the section about treatments in the Newbies Guide that has info about medications which can help:
ES Information- Treatment: Pain Relief, Medications and Alternative Therapies - Welcome / Newbies Guide to Eagle Syndrome - Living with Eagle
There’s also a link in there to a discussion about IJV compression and some info/ tips for helping with that. If the pressure is really difficult to bear there are blood thinner medications which have helped some people.
Nerve pain medication did help my jaw pain I had with ES, so it might be worth trying the Gabapentin, I’m sure as a nurse you know they can take a couple of weeks to build up enough to help…
Dr Lui’s office are quite swamped with referrals I believe, so it may be a little while before you hear. Dr Damrose in CA and Dr Nakaji in AZ also treat vascular ES…

3 Likes
3

Hi Jules, thank you for the information. I am always hesitant to try a new medication because of the side effects, but if it helps at all, I will. For a blood thinner, have you heard of people taking baby aspirin that may help?

I will look into the other doctors as well, as they are much closer. I forgot to mention that i feel dizzy when I turn my head, especially to the right, and i was taking walks every day, three times a day, but now I can only do short walks and then feel lightheaded, which makes me sad. I am waiting on my CT and hopefully will be able to upload them soon to see if there is anything that is missed. I am also getting an MRI in Dec (hopefully them can get me in sooner) but not sure if it will show anything further. Thanks again

2 Likes
4

Yes, side effects are concerning, I believe some members have taken aspirin, yes.
Feeling light headed, or off-balance/ drunk is common with IJV compression, and vertigo, but feeling dizzy when you turn your head can be carotid artery compression too. :hugs:

2 Likes
5

@preciousrrose - MRIs aren’t helpful for diagnosing the problems ES can cause as they only show soft tissues. The things we & most ES knowledgeable doctors are interested in show up on CT imaging especially if contrast is used so you’re heading in the right direction getting a CT w/ contrast.

You can try baby aspirin as @Jules noted, however, I’m not sure it will be strong enough to reduce your head pressure. It’s sure worth a try though! The blood thinners most often mentioned as helpful on our forum are Brilinta, Plavix & Xarelto. Acetazolamide can also accomplish reducing head pressure but it can have worse side effects.

If you do post imaging, it helps us most to have it converted into 3D. You can use radiantviewer.com for PCs or Bee Dicom Viewer App for Macs. Posting an axial image of your CT at the level of C1 is also helpful for seeing compression & possibly determining if both the styloids & C1 are playing a role or if one is a more dominant compressor than the other.

2 Likes
6

Thank you for the information, it is greatly appreciated. I have requested the CT, CTA from the ER where I got it done (although they only had me lying back and looking straight u,p, no turning of heads) and when I do I will try to upload it here for possible assessment. I have contact Dr. Damrose, Dr. Patel (PDX ENT), Dr. Liu, and a doctor in scottsdale, so I am just waiting to hear back to see when I can do these consultations. Dr. Patel I have a consultation on Nov 30, although Im not sure what all he can do. I also will be seeing my neuro tomorrow just in case since I also have myathenia gravis.