Should activities be limited?

I read an article where a young man’s carotid was severed by his elongated styloid. I am waiting to hear back from Dr. Samji’s office to see if he will take my case, and in the meantime I have been invited to go kayaking (slow river kayaking, but still a lot of head turning)…and I just wondered if I should be more careful about the activities I engage in while I am waiting to see a reputable specialist. My styloid isn’t extremely long, but quite a bit of my styloid ligament is calcified. I have had carotid issues (I am a healthy 58 yr old but the carotid near that styloid was 80% blocked and I had to have surgery on it 3 years ago), so I suspect that the Eagle Syndrome issues have at least irritated that area. I was just wondering what your thoughts were on being careful with certain activities?

Hi there! I’m betting we read the same article. There is one, lone article on-line about a poor guy in his car that was found deceased. Somewhere in Europe I believe? My husband took my ipad away the night I found that one, lol!

I say enjoy your trip. You can modify in your own ways if it makes you feel safer. I think being outdoors in nature has more benefits to your over all well-being.

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Thank you for your response! That is kinda my instinct, too, but I really didn’t know if different movements of the head caused issues before one has surgery…I didn’t know if this was a “thing”, so I thought I would ask the group before going on believing that it is all good.

I held back some last year (my surgeries were Jan and May of this year) like with super heavy lifting but I’m not sure that was even necessary. As long as you feel like you have range of motion with turning your head now it should be just fine on the water. You have to turn your head alot when driving/merging. Does that feel ok?

Well, yes, it is fine. Although I’m pretty conscious of it, so I tend to move my torso along with my head and I don’t jerk it fast and hard. I think it’s the “not knowing” that makes me uneasy. I feel like the doctors don’t really know, and there’s not been a lot of research done, so we’re all kind of shooting in the dark. I believe a lot more people have it than they know, and I believe it causes issues that don’t get related to Eagle’s because they don’t look (or they don’t know to look). Just my opinion …

I know the torso twist very well!:crazy_face:

Hi LyndiLou,

I concur w/ everything SewMomma said. If your vascular symptoms don’t flare up when you turn your head then you should have no problem kayaking (lucky you! Wish I was going w/ you!! :wink:). If they do flare w/ head turns, then compensating in whatever manner you need to (torso twisting in particular) in order to see & feel safe w/ your vascular situation is a good plan. I hope you have a wonderful, relaxing trip.

Dr. Samji is amazing! He did both of my surgeries - 2014 & 2015. Can’t say enough good about him. I hope he gets back to you soon so you can get going w/ planning your surgery. You’re the same age I was when diagnosed w/ ES. Surgery will give you your life back so you can live fearlessly.

:sunflower:

It’s very, very rare to have something like that happen with ES, & ES itself is rare…I guess it’s something that lots of us have the odd panicky moment about! I say ‘seize the day’, make the most of the chance to do this & have a great time!

& just thought, I don’t know if @shanef will see this, but he was doing martial arts with ES for quite a while I believe!

So, this is probably a silly question… do many opt to not do surgery? And they live normal lives with no fear of life threatening issues? How would one decide whether to have surgery or not? My greatest fear is that the calcified ligament is irritating that whole area of my neck, and possibly, somehow, the styloid or ligament is pushing up against the carotid, which is what may have caused all the cholesterol to go to my carotid causing the blockage. That’s why I’m considering surgery, and that’s where most of my fear lies. I don’t have much pain (yet…symptoms are slowly getting worse I think), but I have read that the styloid gets longer as time goes by. I’m still learning…

Thank you for the encouragement. I hope Lauren gets back with me today. I’m not sure if he’ll take my case because my styloid is not that long (longer than the other side, but not out-of-normal range), but a large amount of my styloid ligament is calcified. And, of course, I have continued concerns about my carotid.

It’s not a silly question - surgery is a big deal. Going under the knife is a decision that you can’t make lightly. I think we can all just answer your question on an individual basis. Mine was a no-brainer. My swallow was incredibly messed up. Not only did I get a choking sensation with each swallow, my hyoid was being pulled so much by the ligament that it was hitting/getting caught on neighboring anatomy with each swallow. I was very very very unhappy in my body. The surgery fixed all that.
Recovery is hard but not terrible. It truly depends on the symptoms you’re having. I was 43 and did just fine. I have the next half of my life to enjoy now without this.

Hi LyndiLou,

Agree w/ SewMomma, once again. Most people who are symptomatic w/ ES elect to have surgery because it gives life back that had been taken away. I had vascular symptoms as well as pain. I’m very physically active (as are you, or so it sounds) & not being able to do what I loved because of ES symptoms also made my surgical decision a no-brainer. Dr. Samji was my second opinion doctor. His experience & surgical strategy made much more sense to me than that of my diagnosing doctor so I switched doctors mid-stream. I’m so glad I did!!

Since your symptoms are causing you discomfort even if not debilitation, it’s very worthwhile to consider surgery. As you noted & have read, symptoms will get worse w/ time so best to knock out the source earlier than later when you’re completely miserable.

I opted not to have surgery when I was first diagnosed; I was in pain, but it was manageable & I felt the risks of surgery were more than the benefits. But as time went on I started getting vascular symptoms, I felt pretty ill & they could be scary, plus I started to get more numbness & tingling across my face, so that made my mind up & I was so much better after surgery. There have been quite a few members who don’t have surgery & live with it, or try the steroid injections which keep things at bay. But obviously surgery is the only cure.