Has anyone noticed morning back of the skull headaches when you sleep on your back and your head flexes a bit? I was wondering if this is an ES symptom?
Still trying to decide on who and when to get the surgery. I heard taking the styloid back to the skull puts the facial nerve at risk.
Do calcified ligaments need to be removed? Interestingly, Cognetti thought I was a bilateral case and Samjii felt it was unilateral and on right.
Any advice on who to chose based on the differing opinion. I spoke to a neurosurgeon who did feel it is a relatively simple operation. The inability to flex head is common he said. A lot of neurosurgeons take the styloid out when they need to do a vascular surgery. He did believe in the vagus nerve issues while Cognetti and Samjii did not seem to buy vagal nerve irritation as a cause of problems. All surgeons said the styloid offers no stability.
Do calcified ligaments need to be removed or solely detached? I’m trying to compare surgical approaches!
If the ligaments are calcified, then they would be best removed, as they could still cause symptoms. But not everyone has calcified ligaments, mine weren’t, I just had both styloid processes removed. For an experienced surgeon, it is a relatively simple op. You mentioned the facial nerve- it is possible to remove the SPs back to skull base without damaging the facial nerve- although it does depend on the angle of the styloid & the position of the nerve, everyone is slightly different. And nerves are monitored through the surgery to see if they’re under stress- if there was a risk then the surgeon wouldn’t continue.
The effects on the vagus nerve is something we’re just seeing more & more with members, I’m not sure if there’s any research papers showing it, so it’s not as well mentioned as other cranial nerve. But it is a cranial nerve, & exits the skull base close to the SPs, so in theory it could be affected.
Back of skull headaches seem to be mentioned in symptoms quite often, so that could well be an ES symptom.
Interesting that Dr Samji thought only one side was causing you problems, I guess only post surgery could you tell if the other side would need to be removed…both doctors are very capable, & have performed many surgeries. Is the neurosurgeon you saw also willing to do the surgery?
It’s a personal choice of who you feel most comfortable with, how easy it would be for you to travel for surgery, & how quickly you would want it- I believe that DR Samji performs this op more regularly, so can fit surgeries in sooner .
Best wishes with your decision!
Thanks so much Jules! Like everyone else, I do not know what I would do without this group. With such a rare disorder it is hard to pull the trigger to move forward with the surgery but you all help me immensely. I am going to go with either Cognetti or Samji and just trying to figure out approaches and summer plans!
It’s very reassuring to see that everyone has had a version of my symptoms and then get better. Dr. Samji stated that patients tend to put their head in extension because of eagle syndrome and that causes all kinds of havoc with the neck muscles. He believes this is what is occurring in my case as it has been observed by multiple physical therapists!
Just curious if Dr. Samji specifically stated he thinks your ES is unilateral, or if he just emphasized that there was one side more likely to be causing your symptoms? If your CT scan clearly shows bilateral ES, he may have been solely focused on the really long side w/ thoughts of seeing if you’re still symptomatic once that’s gone. Though this is not the norm, there are some people on this forum who have bilateral ES but truly only had symptoms from one styloid. Once that styloid is removed, & several months for healing have passed, symptoms resolve or mostly so. Sometimes you just can’t tell till one side is removed which symptoms the remaining styloid is causing or if it causing symptoms at all.
I agree w/ Jules that you need to choose the doctor whose strategy makes the most sense to you.
He believes it is unilateral but will see how I do after surgery.
Did anyone proceed with angiogram? Did you feel like you needed more evidence then just the wierd symptoms?
My cousin is the head of the Barrow and he really recommends angiogram vs venogram but not one eagle’s surgeon would order it for me. They all recommend surgery without further testing. Though my cousin did admit the vagus nerve can be affected in Eagle’s.
It just scares me because I had a spinal fusion and that didn’t provide much relief.
I guess most proceed with surgery and that ends up being the definite test?
I guess because there are risks with any procedures, maybe they presume you’d go ahead with surgery anyway so why spend more, take more time & perhaps give yourself more risk when they feel you’re a good candidate anyway?
Whether to have a venogram or angiogram would depend on your symptoms - I think that angiogram is more dye showing the arteries, whereas the venogram only shows the effects on veins. I had symptoms of jugular compression so had a venogram, which confirmed it. I must admit it made the decision to have surgery easier though, knowing that.
May I ask who did your surgery? What made it necessary in your case? I think it just makes it easier to have definite testing but yes in my case three surgeons felt it was not necessary.
We’ve had several members who had spinal fusions (cervical spine) recommended & done by doctors who thought that would cure their pain. Since the pain was coming more from ES than from the spinal instability, at least some of those people experienced what you have - no relief after the fusion surgery. It wasn’t until they received an ES diagnosis & had their styloid(s) removed that their pain began to subside.
You make a good observation in your final sentence - Surgery is the definite test. That’s true w/ ES surgery, spinal fusion surgery…all surgeries for that matter. We always hope for the best possible outcome.
There is actually a medical article about a patient status post cervical fusion followed by a 10 year history of pain which remitted day 2 post op of his eagle’s surgery. One could also argue that a fusion makes you more upright with less range of motion so the eagle’s becomes more problematic!
Jenniferobel,
Would you please post the link for that article in the Newbies Guide or in answer to this post & we’ll get it into the Newbies’ Guide. Thank you for this good information!
That’s intetesting! Good point that a spinal fusion makes you more upright …
I’m in the UK, I was lucky enough to find out about a really good doctor on here. I had pulsatile tinnitus from the jugular compression, he has a special interest in that as well, so he wanted to look into it, & recognized some of the IH symptoms I had. That’s why he wanted to order the venogram.
I too can get pulsatilla tinnitus. I just guess I will need to bite the bullet. If you look at the Facebook page, the outcomes do not seem as good as those on this website? I actually have a fourth consult and if he too agrees, I will move forward w Cognetti or Samji. I think the covid rates are just too high at Jefferson right now.
I don’t know why the results post surgery are not so good- all I can say is that the out comes from surgery are much better if as much as the styloid as possible is removed, (which is generally better with external surgery than intraoral) that any calcified ligaments are removed too, & any stub remaining is smoothed off. Either steroids or a drain post surgery help alot with swelling & that makes recovery easier. It could be that because of info people get on here that they look into surgery more carefully- as you are rightly doing- ask the right questions, & see more experienced doctors? We have had members find this group post surgery because they’ve had a bad experience & not good results, they’ve had surgery with doctors ignorant about ES. Would you believe that we’ve even had members whose doctors have just snapped the styloid off & left the piece in still! So asking the right questions & being cautious as you are is really good!
It could also be that maybe people are not being patient enough with recovery- you don’t always get immediate relief, it can take even up to a year for nerves to heal.
I’m glad you feel that there’s stories of successful outcomes on here- sometimes it feels as if there isn’t a very good balance as not everyone comes back to share their stories- if it’s gone well they want to move on & don’t need the site any more- it’s often members who have had a difficult time who come back for more support.
So pleased that you’re able to speak to different doctors & make an informed choice!