Hey again,
So sorry to hear this. But I know you are not alone in feeling that way, i got very low and very anxious at times early on.
Are you taking any medication?
I don’t know if it was the amitriptyline or not, but after I started taking it, I felt less anxious and a little more positive. I have always been very anti - antidepressants, and I only took the amitriptyline because they told me it was specifically for nerve pain, if not taking it already it may be worth a try.
I also certainly felt relief with a blood thinner, and that made day to day alot easier. It certainly didn’t fix the problem, but gave me a lot more coping ability.
Your GP may prescribe both of these? If not, try another GP!
Dr Axon has specific criteria, enforced upon him, so difficult to tell if he really believes in the criteria he sets or just has to stick to those rules.
He says you must have Classic eagles symptoms, and did seem a little dismissive of Vascular eagles. By classic symptoms, you need Whooshing pulsatile tinnitus. I thought I had pulsatile tinnitus, but not by his definition apparently. He also expects you to have a sharp dagger like pain under jaw up into ear, or under tongue.
His definition of vascular eagles is compression of the carotid arteries NOT the jugular veins.
Conversely, Dr Hughes did not seem to have great knowledge of vascular eagles, at least he didn’t talk about it much, but he is definitely convinced of the styloids ability to compress the jugular veins, and took no convincing at all to operate when he saw my CT Venogram.
Have you had a CT Venogram?
There are others who operate around the country I’m sure, but finding them can be tricky! I tried cold calling / emailing a number of hospitals in my area and most did get back to me with a yes or no as to whether they had surgeons who would do a styloidectomy. (They were all no, I’m my area!).
Dr Jake Timothy at Nuffield Leeds appears to do a C1 shave for the same issue but apparently doesn’t touch the Styloids.
Try to stay positive. I thought I would be on this journey for the rest of my life too, and then suddenly I was offered surgery! Don’t give up, every set back is one step closer to a break through!
