Hi everyone, i was recently diagnosed with Graves disease and Eagle syndrome, i am currently waiting for surgery to have my thyroid removed for my graves disease and a bone in my neck to help with my eagle syndrome, i currently suffer pain in the left side of my neck and i have lost the left side of my voice box and my tongue deviates to the left and is constantly cramping, does anyone else suffer from this??? So they are removing a bone in the left side of my neck to help this??? does it work? Please help.
Hi Eryn, and welcome to the site! I don't know anything about Graves disease, but if you look at one of the other featured discussions- Ken's started one about high cortisol levels- you'll see that there a lot of ES sufferers with thyroid problems too.
Most of us get neck pain, so you're not alone there. The styloid bone has ligaments attached to it which work the tongue, so if your tongue is affected it's perhaps because of calcification in that area (ES can be due to an elongated styloid process, and also calcification of the ligaments). Often after the styloid is removed people can have problems moving their tongue properly temporarily, so hopefully if you have your styloid removed then this will right itself.
Are they going to operate on your thyroid and your styloid process at the same time? A lot of us have trouble getting diagnosed, and trouble getting a doctor to operate, so you're one step ahead.
I had similar pain on my left side and tongue issues. I had surgery last week and 1 inch of my styloid was removed. I don't have any more pressure on my tongue at all. While I still have some pain on the left side of my neck, that seems to be related to the surgery. The ENT surgeon that I should know within a month if all of my symptoms will be relieved, but he is optimistic and so am I. I actually had a few hours yesterday when I didn't feel any pressure in my neck for the first time in a couple of years. It was incredible. I don't know anything about Grave's disease, but your symptoms sound very similar to my ES. Good luck!
Hi Eryn, and welcome to the site! I don't know anything about Graves disease, but if you look at one of the other featured discussions- Ken's started one about high cortisol levels- you'll see that there a lot of ES sufferers with thyroid problems too.
Most of us get neck pain, so you're not alone there. The styloid bone has ligaments attached to it which work the tongue, so if your tongue is affected it's perhaps because of calcification in that area (ES can be due to an elongated styloid process, and also calcification of the ligaments). Often after the styloid is removed people can have problems moving their tongue properly temporarily, so hopefully if you have your styloid removed then this will right itself.
Are they going to operate on your thyroid and your styloid process at the same time? A lot of us have trouble getting diagnosed, and trouble getting a doctor to operate, so you're one step ahead.
Good luck with your treatment!
Yes they are operating on both at the same time, they told me they were removing the whole bone, i have no idea what that means....
If they say they are removing the whole bone, that presumably means that they'll remove the whole of the styloid, which is good, as some people have just had a bit taken off, and then still had problems. Has your surgeon done this surgery before? Others with experience of the operation have said it's best to go to a doc who's done the surgery before. Will you have a pre-op appt.to ask your questions, or are you able to email your questions? It's so much to take in on a first appt. when you find out something like this, so now you've had time to reflect it would be good to get that opportunity. Who is your surgeon? Maybe others on this site have seen him/ her before?
A heads up to you. My surgeon said he removes as much of the styloid as possible - all the way to where it attaches at the skull. I have bilateral ES & after my first surgery, he told me he only removed 1 inch of my styloid because one of my tongue nerves was tightly wrapped around it, & he didn't want to cause permanent damage to my tongue by fooling with it. I did come out of surgery w/ only half of my tongue working properly but was assured full function will return w/in 6 months. So the bottom line is, inspite of a surgeon's best intentions, there are unpredictable "quirks" in our body construction which he/she can't be aware of till he/she is in the thick of surgery. Sometimes these "quirks" limit his/her ability to achieve the goal of compelte styloid removal. I'll be interested to see what my other side has to offer when I have it removed in May.