TOS surgery or styloid removal? Story: I had tonsillectomy and two months later developed severe tightness with pins and needles in the top of my neck, base of skull, and top of head. The pain is constant and never goes away. I cannot touch anywhere on my neck due to pain.
1.5 years later, I developed trap and arm pain. I also had a radiofrequency ablation at c2-c4 so uncertain if this caused the arm pain. Scalene nerve blocks and botox eliminated the pain on the left side, but didn’t touch the right side. Now my right side is where all the pain is.
Eagle syndrome doctor wants to remove styloid, even though imaging is normal. He says this is common after tonsillectomy and causes my symptoms.
TOS doctor wants to surgery due to arm pain, but can’t confirm that the primary symptom - neck/skull pain - will resolve.
I have had every test in the book. I don’t have neuralgia because my pain is not stabbing. It is dull, constant, pulling tightness. I’ve had many procedures and nothing has helped.
Please comment only if you’ve had surgery. Thank you so very much to everyone.
Neuralgia can be 2 types - Type 1 is the stabbing/ electric shock type pain, but also Type 2 or atypical neuralgia which is aching, burning, boring type pain. I have the type 2 in all 3 branches of my Trigeminal nerve , so this could be what’s causing your pain. Mine improved with surgery but hasn’t completely gone- like many of us here I have other neck issues which I think contribute as well as ES. I was also getting numbness and tingling before surgery which has gone, whether that was the trigeminal nerve or the facial nerve I’m not sure…
Obviously without seeing your imaging I can’t say for sure about your ‘normal’ scan, but we’ve seen many members who have a normal report from the radiologist, but because there’s much ignorance radiologists have been know to dismiss very elongated styloids as normal, and also it’s the thickness of the styloids as well as the angle they’re growing which can cause symptoms.
It seems to be more common for doctors experienced with ES to be cautious as to whether the surgery will help, rather than be keen to do the surgery if the styloids are normal… are you seeing Dr Hackman?
Several years ago, Dr. Hepworth suggested that when there are multiple vascular compressions, starting at the top & working down is the best strategy. Just wanted to provide that food for thought as you consider your next step, @Steven1976.