I am fairly new to this group. I requested a neck CT in September due to an increase in symptoms, and an enlarged growth on my spine that hadn’t changed/gone away after 6 months. I learned that I have an elongated styloid process, and that the growth is a benign fibroadenoma. A few months before the CT I noticed nerve pain “shooting up” the back of the left side of my head. This pain was new and didn’t respond to my normal migraine medication. I also noticed increased cranial pressure, blood pressure, and dizziness. My neurologist said it was probably neuralgia. She prescribed another medication to address the pain. I have been suffering from chronic migraines for 10+ years. Over the years I have tried many different medications, massages, chiropractor, botox. Botox worked the best for me, along with a combination of medications- both preventative and reactive. Shortly after the CT my new symptoms continued to escalate: cranial pressure, daily headaches/migraines that didn’t respond to medication, higher blood pressure, and panic attacks. I visited my neurologist again, describing my symptoms, and telling her about Eagle Syndrome. She prescribed me a low-dose blood pressure medication. She said that she was not familiar with Eagle Syndrome, but ordered more imaging. I told her that I was planning to see some experts, and she said that they would appreciate the imaging. I had a MR Venous Head wo Contrast, MR Angio Head, and MR Brain and IAC w/wo Contrast. A few days later I was feeling better due to the new medication reducing my inner-cranial pressure. I realized that I had symptoms that I dismissed as chronic pain/migraines: neck pain, dizziness, pain & dizziness when turning my neck to the left, fullness/pressure, pain in my ears, difficulty swallowing, poking sensation in the back of my throat on the right side, pressure behind my left eye. Daily headache pain in the left- middle, back of my head. Lately, have addressed some issues with my lack of c-curve. I am doing some gentle exercises and I bought a cervical support pillow. I have been researching ES, and have a teleheath consultation with Dr. Costantino on December 3rd. I look forward to hearing what he has to say about my health. I was able to schedule a consultation with Cognetti, but unfortunately it’s not until July. Nakaji has requested additional imaging from me in order to move forward. I guess the imaging I shared is not enough. I am on the fence about moving forward with him because of his location. I would like to upload some images to see what this group things. I know there are many of you that have studied, researched and learned so much about Eagle Syndrome (which is what I am busy trying to do).
Feel free to upload any images & we’ll help you if we can! @TML who has helped lots of members is recovering from surgery himself at the moment, but hopefully we can give you a few ideas of what might be going on… Just make sure you don’t post anything with personal info on.
The imaging DR Nakaji usually seems to want is quite invasive & not without risk, so although we do encourage members to get more than one opinion if they can, it’s understandable that maybe you don’t want to push forward with Dr Nakaji. And a shame that Dr Cognetti can’t see you earlier, you could perhaps ask to be put on a cancellation list for him & you might get to speak to him earlier?
Good that you don’t have to wait too long for Dr Costantino!
Thank you Jules! I asked to be on Dr. Cognetti’s cancelation list, so we will see! I would definitely like more than one opinion for sure. I am going to see about scheduling with Dr. Hackman as well. I will post some images. Should I just reply to my original post, or create a new one?
@jdeltiste - You can post your images in this discussion. No need to start a new discussion. You can convert CT & MRI images to 3D by using radiantviewer.com for PCs & Bee Dicom Viewer App for Macs. Having 3D images to look at will help you see what’s going on in your neck unless you’re good at reading the slices. We’re better at understanding CT images here than MRIs.
I’m not exactly sure what images to upload? I’m still working on what I’m supposed to be looking for. I know what the styloids look like, but struggle with knowing how to see if they are impacting the blood flow. I did learn through looking at the images, and research that I do have a cervical rib (extra rib). You can see it in the images. Apparently it can cause TOS Thoracic Outlet Syndrome. I don’t think I have any symptoms of TOS, but it could be related? So interesting! Please let me know what you see in my images, and if I need to post something else that
@jdeltiste - You have bilateral IJV compression being caused by the transverse processes of your C1 vertebra. C1 appears very wide from top to bottom in the images you posted & your spine is pretty distorted, but that may be the way your 3D images were rendered by the software you used. I can’t tell much about your hyoid bone because it’s also pretty “fuzzy” in the images.
Cervical ribs can cause TOS, but I don’t think they always cause symptoms. You can do some research on TOS via Google to see what symptoms are primary for that & compare them to yours.
I agree with @Isaiah_40_31 about the IJV compression by the C1 processes & styloids, also your neck is very straight and has lost it’s lordotic curve which we see quite often, there are some exercises which can restore that in this discussion: List of my favourite resources on YouTube to learn anatomy - General - Living with Eagle
Although it’s one of those tricky ones, as your head position could contribute to the compression, or it could be your body has adjusted over time to make more space for the veins, so if the exercises make your symptoms worse then don’t push it…
Thank you for your insight. What might the treatment be for IJV compression by the C1 processes & styloids? I have tried some of the exercises, but they made my symptoms worse.
There are some medications which can help the symptoms of IJV compression, like Plavix, Brillinta, Eliquis, Xarelto, Diamox, and supplements like Creatine, Trimetazidine & Citicoline have been mentioned as helpful, but check with a doctor if it’s okay for you to take them. Ultimately , the only possible cure if they’re causing compression is through surgery to remove the styloids, and possibly to have the C1 process shaved. Very occasionally the IJVs don’t re-open, so then further treatment of a balloon angioplasty or possibly stenting might be needed.
Thank you, Jules. I started taking Creatine in June because I was told that it could be helpful since I suffer from migraines. I will look into the other supplements, and possibly talk to my doctor about the medications. I am anxious to see what Dr. Costantino says next week.
