My mother has severe swallowing difficulties, constant pain on the right side of her throat and neck, pressure headaches, and serious digestive issues. She has had surgeries for Chiari malformation and glossopharyngeal neuralgia, but the symptoms continue and even worsen.
The last doctor suggested that the real problem might be vascular Eagle syndrome, due to narrowing between the atlas and the styloid process pressing on the nerves. Other doctors say it’s very unlikely that Eagle syndrome could explain such a wide range of symptoms.
We are trying to understand: Could this atlas–styloid narrowing really be the source of all these severe problems?
We are also considering surgery with Dr. Kamran Aghayev in Turkey. Has anyone had experience with him, or any thoughts about this approach?
We also have some CT 3D reconstruction images that show the narrowing between the atlas and the styloid process (see attached). I would really appreciate if anyone could take a look and share their thoughts about whether this could explain my mother’s symptoms.
Any thoughts or similar experiences would be very helpful.
@Aran I can help you better assess the IJV compression. Can you go to the axial view of the CT and go to C1? It’s the top vertebrae with a white circle in the middle top. I’ve attached my own imaging to help you know what to look for:
Thank you for your response and interest. I tried to capture an axial CT slice at the C1 level (bone window). Because of Chiari decompression surgery, the C1 ring may not look complete. Is this image suitable for assessing IJV compression?
Your mother appears to have severe IJV compression on both sides, @Aran. The doctor who told you that IJV compression couldn’t be the cause of all of her symptoms is right to some extent because some of her symptoms (digestive issues) are likely being caused by her vagus nerve also being compressed along w/ the IJVs. It exits the skull & down the neck right alongside the internal jugular veins so when the IJVs are compressed, the vagus nerve normally is too. The vagus nerve is the largest of the cranial nerves & affects many of our bodily functions including swallowing, talking/vocal cords, breathing, blood pressure, heart rate, body temperature, digestive function, bowel/bladder function & anxiety/depression levels & other things. It alone can cause quite a diverse set of symptoms when it’s under stress. When the vagus nerve symptoms are added to symptoms of IJV compression, many people become fully bed bound. Other members may offer other opinions, too.
Dr. Aghayev would be a good surgeon to do her surgery. He has helped several of our members who have had good outcomes from the surgeries he did. Recovery from surgery can take quite a long time i.e. many months & sometimes up to a year or more for the nerves to recover & brain to readjust to the new level of blood flow it’s experiencing once the IJVs are re-opened so she shouldn’t expect to “feel like new” when she awakens from surgery.
I’m sorry she’s suffering as she is & hope she can have surgery soon so she can start healing.
@Aran this is perfect, see attached annotated image.
As @Isaiah_40_31 has said, your mother’s IJVs are both very compressed between her styloids and C1. She would definitely benefit from getting her styloids removed above the level of C1. Don’t let her get surgery unless you are 100% certain that the surgeon is able to cut the styloids above C1, or she is going to continue to experience intracranial hypertension symptoms.
The average styloid-C1 distance in a healthy individual is about 9mm. I’d be surprised if your mother has more than 1mm on her left side, and 2mm on her right.
I’m glad that you were able to attach the images of your Mum’s scans, I agree with the others that her IJV compression is severe, so no wonder she’s been feeling very ill!
Dr. Kamran Aghayev has done surgeries for members including C1 shaves, so good you’re considering consulting with him. You can look up discussions about him using the search function on the site , there’s some info in this discussion to get you started: A Canadian’s Journey: VES Surgery in Türkiye Dec. 10 - General - Living with Eagle
Thank you so much for your support and for sharing your experiences.
Here in Türkiye, many neurosurgeons are still unfamiliar with this condition — even though we shared my mother’s scans and detailed reports, we couldn’t get much help.
That’s why your experiences and insights have been truly valuable to us.
We recently had a consultation with Dr. Kamran, and the surgery is now scheduled for October 16.
Unfortunately, my mother’s condition has become very difficult — she has been suffering from severe abdominal, intestinal, and head pain, and we’ve had to go to the emergency room several times recently.
There are 10 days left until the surgery, and I wanted to ask if anyone has any suggestions or advice to help ease her pain during this waiting period.
Thank you all again for your kindness and support.
@Aran - Your mother’s adominal/intestinal pain are likely coming from her vagus nerve being squashed along with her IJVs. I think this was mentioned above. To help relieve her head pain, she can rest/sleep w/ her head & shoulders elevated. She may need to experiment to see how much head elevation is required to give her relief. Immediately after surgery, 30º of head elevation is recommended for several days & up to several weeks after surgery to help reduce swelling in the neck & throat.
Icing her neck for 15 min. every couple of hours w/ a thin cloth between skin & ice pack can be helpful. Gel ice packs work the best. That same routine will help reduce pain & swelling after surgery, too. If ice makes symptoms worse, she can try heat packs.
Some members have found over-the-counter Lidocaine patches or lidocaine cream applied to the neck can help reduce pain, but those may not be available in your country without a prescription.
If your mother notices that particular head positions make symptoms worse, then avoiding those is necessary. Some of our members have found that using a soft neck collar like those used after a neck injury can provide head support & relieve neck pressure but others have said the light pressure the collar puts on the neck made symptoms worse. Since she’s so close to surgery, it’s probably not worthwhile getting a neck collar, but maybe you could improvise using a soft rolled up towel carefully placed around her neck for support to see if that helps.
@TML has also suggested for people w/ IJV compression, holding the head in a position that would allow an upward gaze, i.e. the neck is in slight extension (chin slightly lifted), can move the styloids away from the IJVs/compressed nerves removing some of the pressure & providing a bit of relief.
