Im desperate for help. Mine “started” in July…moving tooth and jaw pain. I was bounced around between dentists getting teeth pulled and root canals, even though xrays showed nothing, I demanded they do it. Then it was on to a neurologist who thought I had trigeminal neuralgia. My migraines I had since a teenager changed in position and intensity, no longer being helped by any of my normal migraine meds. I developed ringing in ears, ear fullness, heartbeat in ears, head pressure feeling (like im hanging upside down all the time), double/blurry vision, balance issues, cognitive issues, depression, anxiety, panic attacks, personality Changes. My symptoms kept snowballing. I saw neurologists, ENT, neurosurgeons, eye dr’s, dentists, was started on splints for TMJ, ER visits, hospital stays, steroids, nerve blocks, botox, MRI’s, MRV, cat scan, lumbar punctures, every blood test imaginable, MRA…all to be told all my scans are normal, there is nothing wrong with you…and have you considered this is all emotional and maybe you should try antidepressants and therapy??
It was at this point I knew my health could not be left in medical hands, so I gathered all my scans and Google searched every word in them. It was then I noticed a cone beam scan taken at dentist in very beginning noted elongated stylohyoid of 42mm bilaterally…my search quickly led to jugular compression which was all my symptoms EXACTLY. I didn’t know what to do with this, so I made an appt with another ENT, and he was humble enough to admit he thought I was on to something, although its something he doesn’t treat, nor did he know where to send me. He was very knowledgeable about it, and explained in detail with the venous portion, more is required than just removing stylohyoid. He explained the structural space issue, and it made sense. He did order ct venogram and catheter venogram. So its now armed with these results that I am desperately seeking treatment. I was so excited when I was able to get an appt at The Cleveland Clinic, I thought that would be the answer. I was shocked to find the ENT there was only concerned about removing the styloid, and the jugular compression meant absolutely nothing to her. She said she didn’t care if my jugular was compressed, all she does and would do is remove my styloid and said she didn’t feel doing this would even solve any of my symptoms. And would not even refer me on to anyone else on the campus. Major disappointment. That was last week, and ive been doing nothing but phone calls since to find a dr who will treat the vascular variant. I talked to several that would treat me, but no openings till September. Im convinced ill be dead by then if not treated. My symptoms keep nosediving, and fast. If I didn’t know what I was dealing with, I would swear I have early onset dementia. And the headaches/ Pressure are excruciating, not to mention the constant assault on your central nervous system.
Now, looking back, I can see that I have had symptoms of this for years.
So Any suggestions? And advice on how to be seen sooner? Idk what do if there is a long wait everywhere… Images attached.
