Yesterday I finally got diagnosed with bilateral eagle’s syndrome. Doctor don’t want to operate because I also have spontaneous CSF leak in my cervical spine c2-c6 and he don’t believe that eagles could cause dizziness. Besides, positional ultrasound didn’t show any blood flow issues, but they didn’t test me lifting or bending head, or doing something with hands, like cutting vegetables. He told me, that he will do 3D reconstruction. Doctor is very smart. I hope he will operate. He don’t have much experience with this, only 2 eagles patients before, but he is only one in my country who does it. I just want my life back.
He thinks symptoms are not eagles related, but I think they are, because I suffer from 2019., but my symptoms were manageable. I don’t think that my CSF leak is going on for 6 years. Headaches I can relate to CSF leak.
Will see what neurosurgeon will say.
I hope they will remove styloids and then do something with the leak.
Also I am having T3-T4 disc protrusion, that could explain other symptoms.
I’m glad that you’ve been diagnosed at least! You may find if you do have a CSF leak that it heals once the compression from the styloids is removed- it’s common when they’re still in to cycle between high intracranial pressure, which causes a leak & lowers the pressure, then if that heals the pressure builds again, & so it continues. No point trying to get the leak fixed until the compression is removed…
We have a list of questions to ask a surgeon, the main thing is to make sure that they remove the styloid as close to the skull base as possible to clear the compression, but all the questions might be helpful:
How many ES surgeries have they done and what was the success rate?
Whether they’re going to operate externally, or intraoral- through the mouth. Whilst some members have had successful surgeries with intraoral, external is better for seeing all the structures, to be able to remove more of the styloids, & also there’s less chance of infection.
You need to ask how much of the styloid he’ll remove- as much as possible is best- & anything left needs to be smoothed off. The piece needs to be removed too- some doctors have snapped it off & left it in! If the styloid is only shortened a bit it can still cause symptoms.
If your stylohyoid ligaments are calcified, then any calcified section needs to be removed too.
There’s usually swelling after surgery; you could ask if a drain’s put in to reduce swelling, or if steroids are prescribed. It’s not essential, but can help with recovery a bit.
Will it be a day case surgery or will you need to stay in?
Obviously ask the risks- we know from experience on here that temporary damage to the facial nerve is quite common, and also the hypoglossal nerve and the accessory nerve. These usually recovery very quickly but in some cases members have needed physiotherapy. There is also the risk of catching a blood vessel or having a stroke, but these are very rare.
Ask if the surgeon monitors the nerves- this should be done to see if there’s stress on the nerves to avoid damage as mentioned above.
What painkillers will be prescribed afterwards.
Ask about recovery- most doctors either down play it or are genuinely unaware of how long the recovery can take!
We have heard that occasionally doctors use surgical clips which are left in, it’s been suggested that these could interfere with chiropractic adjustments if needed post-surgery, so something to consider, and also we have now seen members who’ve been left in pain from the clips and needed further surgery to remove them, so do ask if they might be used.
Let us know how you get on with the neurosurgeon, & hopefully when you get a date for surgery!
@Jete - I’m so glad you’ve found a doctor who knows about ES & finally gave you a diagnosis. It sounds like he’s not completely familiar with all the problems it can cause though. You could give him links to a few of the research papers about stylojugular syndrome we have on our Research Papers list:
