Just wondering if anyone's had any luck managing symptoms and how?
I am finding the main issue for me is the massive discomfort of having a hard object lodged in my neck, and the clicking sensation associated with the bone conflicting with soft tissue whenever I move my head. I haven't found any way of lying down comfortably so tend to lose a lot of sleep as a result.
Using tiger balm/heat packs seems to help a bit (distraction?) but not a great deal.
Anyone found a way of managing this type of thing?
I had that same rock like feeling and often had to sleep in a lazy boy to avoid putting pressure on the side of my neck.
I don't know if you want to try medications, but various pain medications can help some (until you can get a surgery). Sometimes oxycodone helped me with that rock feeling. My doctor also had me take extra strength acetaminaphin and ibuprofen together.
Some people are helped by various nerve pain medications like gabapentin or others. Others are helped by medications like nortriptyline or amitriptyline (sp?). I think you may want to find a good pain doctor and see if they can offer some help. Sometimes it's a process of experimentation to see what helps and what doesn't.
Surgery to remove the bone, my friend. A specialized ENT, glossopharngeal surgeon who has experience with Eagles Syndrome. Get a wedge pillow or prop yourself up elevated and that may help your sleep. I can't lay flat and sleep, even post-op. Good luck.
Sleeping more upright helped me, like mooncat says, a wedge pillow helps, and I use a V shaped pillow too, as that seems to help with keeping pressure off the sides of your neck. Some people find cold helps, but I found that heat helps- cold upsets all the nerves more for me. The amitriptyline has helped with nerve pain a lot, and also helps me sleep. I felt a lot better once I was on that!
Mooncat - yes definitely surgery! I already had surgery once - my ENT surgeon attempt removal via the tonsil bed, but he couldn't get to the bone so it failed.... he then wouldn't attempt the external approach as he thinks its too risky! He thinks the risk of severing the facial nerve outweighs the benefit of removing the bone.
No-one else in Tasmania has any experience with this condition, but through this forum I discovered a surgeon in Melbourne who has successfully done the external approach (once) so I've booked in for an appointment in September to have a chat with him.
Which type of surgery did you have, and did it fix your symptoms??
mooncat said:
Surgery to remove the bone, my friend. A specialized ENT, glossopharngeal surgeon who has experience with Eagles Syndrome. Get a wedge pillow or prop yourself up elevated and that may help your sleep. I can't lay flat and sleep, even post-op. Good luck.
Hey Mooncat! Take heart. You will be able to lie flat & sleep at some point in the future. I think it was at least 2 months after my first surgery before I could lie flat again. :)
mooncat said:
Surgery to remove the bone, my friend. A specialized ENT, glossopharngeal surgeon who has experience with Eagles Syndrome. Get a wedge pillow or prop yourself up elevated and that may help your sleep. I can't lay flat and sleep, even post-op. Good luck.
The external approach is actually safer than internal as the location of the nerves, muscles, vascular tissues and styloid are very visible by the external approach whereas with the internal approach (as you have experienced) the doctor is cutting "blind". He/she has an idea of where the styloid is but cannot see where the other important things are when cutting the opening to shorten the styloid. I hope your visit to Melbourne is profitable for you!
Tomahawk said:
Mooncat - yes definitely surgery! I already had surgery once - my ENT surgeon attempt removal via the tonsil bed, but he couldn't get to the bone so it failed.... he then wouldn't attempt the external approach as he thinks its too risky! He thinks the risk of severing the facial nerve outweighs the benefit of removing the bone.
No-one else in Tasmania has any experience with this condition, but through this forum I discovered a surgeon in Melbourne who has successfully done the external approach (once) so I've booked in for an appointment in September to have a chat with him.
Which type of surgery did you have, and did it fix your symptoms??
mooncat said:
Surgery to remove the bone, my friend. A specialized ENT, glossopharngeal surgeon who has experience with Eagles Syndrome. Get a wedge pillow or prop yourself up elevated and that may help your sleep. I can't lay flat and sleep, even post-op. Good luck.
Other options along with pain medication are a TEN's unit which is often used for women in labor, cold laser therapy, acupuncture, curcumin (termeric) for anti-inflammatory, warm towel with fresh ginger or ginger essential oil. Also my pain doc offers topical creams and mouth pastes which have gapapentin in them along with ketamin (type of anesthesic drug). Magnesium is great too for calming the muscles, there is a CALM powder form you can get at Natural supply stores.
The body often goes into protective mode around the styloid which is causing havoc within the structures. Once this blue-print has settled into the body it is difficult to overcome. The pain signals if left long enough without intervention become the new pathways sent from the brain.
Hi Tomahawk, I have the same issue with getting comfortable in bed, I found removing my pillow and placing it with my heat pack in the ache of my neck gives me comfort to fall asleep. I own a busy cafe in the heart of Geelong and i am struggling with the whole head movement and clicking motion.