How would you value the “specific experience” (doing styloidectomies) vs “generel experience” as a surgeon (having 30+ experience doing surgeries in the neck/skull area)?
The surgeons in my country might have done 3 styloidectomies but have 30+ years experience. I can however get it for free in my home country.
How crucial would you say specific experience is? Just interested in anyones thoughts, especially if they have heard any surgeons take on this question 
Thanks in advance
We’ve been told that head & neck cancer surgeons for example routinely remove the styloids to access tissues in the area, so I would presume that a head & neck neurovascular surgeon is used to this too? So if you found a surgeon who has skull base surgery experience then they should be capable of removing the styloids safely. The important part is that you find a surgeon who can remove the styloids close to the skull base, as we’ve said before, especially for you with IJV compression, if you saw an ENT who for example would only shorten the styloids to ‘average’ length, it would be unlikely to resolve your symptoms. That’s something you would have to discuss with whichever doctor you have in mind.
Thanks again:)
Do you know whether the experienced surgeons (like Dr. Aghayev and Dr. Axon) succeeds in removing the styloid procces all the way to the skullbase everytime? Because I know that my local surgeon strives to remove it all the way to the skullbase, but I also know that with the last patient the surgeon had to “abort the mission” during surgery as the surgeon discovered during surgery that it wasn’t possible / too dangerous (i guess due to nerves). I’ll have to ask her if this was a special incident obviously…
But I’m curious if the really experienced surgeons ever have to accept sometimes having to leave 2cm af the styloid?
@IJVman Dr. Nakaji has done hundred of cadaver dissections and 3D modeling in an attempt to determine how much styloid to remove while sparing cranial nerves. So he has a general model going into surgery but ultimately makes the final decision once in the surgical field. For my second surgery the plan was to remove the styloid and shave C1 enough to allow the IJV room to inflate (and testing this dynamically with head rotation during surgery) but once he was actually looking at my anatomy he saw that there was a cranial nerve draped over C1 as well as a venous plexus. He didn’t want to damage the nerve or remove the plexus (since it was assisting in drainage) but was able to remove enough of the styloid (and other compressive tissues) to see the IJV inflate and stay inflated dynamically.
I would guess that as @Chrickychricky says there are situations where it is too risky to nerves to remove back to the skull base; some of the nerves like the facial nerve are monitored during surgery, so they can tell if it’s being affected. Everyone’s anatomy is slightly different, so sometimes nerves can be in unexpected places! I’m sure @Isaiah_40_31 will tell you, but with her first surgery her hypoglossal nerve was tangled around the styloid so it couldn’t be removed as far back as the surgeon would normally do.
This is probably one of the biggest questions I personally have and concerns me just as much as not getting the surgery. I can’t imagine having things worse.
@Getmused - Unfortunately, when symptoms are so terrible they affect quality of life, the prospect of surgery becomes a situation where there’s a chance it might not help, or make things worse, but there’s also a chance it will resolve, or dramatically reduce, the symptoms. For most of us, who’ve had surgery, the symptoms were bad enough that the gamble was worth it for the potential pay off & in many, many cases, it’s been a good gamble. Without knowing specific statistics, I believe that more people have good outcomes from ES surgeries done by highly experienced ES surgeons than there are people who have poor outcomes.
Those risks are much smaller if you see a doctor with experience, & like I said the nerves should be monitored which helps… For those of us with vascular ES especially, there are risks with leaving the styloids in as well, so that makes the decision even easier!
@Getmused , when I was first diagnosed, I had pain in my face, ears, jaw , teeth & neck, medication helped with this & I felt that the risks of surgery were possibly worse than the symptoms , like you’re concerned with, so I left it for a while. The vascular symptoms started later, & those were grim which is when I decided to have surgery. So I can understand your concerns, and not everyone opts for surgery…
can i ask how you define this? Does this mean that there has to be a second person (not the primary surgeon) whose only job is to monitor the nerves? Do you know if Dr. Aghayev or Dr. Axon has an extra person to only monitor the nerves?
Obviously when I ask the local surgeon - with less specific experience but a lot of generel experience - she is not just gonna answer by saying “I don’t monitor the nerves at all”. But how much is enough? What are the specific question that will actually get a useful response?
Hope this makes sense:)
The facial nerve is the one which is usually monitored- apparently it’s really fragile & very easy to catch. The way it’s monitored is that clips/ probe things (sorry, not very technical!) are put on the nerve externally, which then sounds an alarm if the nerve is touched at the neck/ skull base so the surgeon needs to pull back. So it doesn’t need an extra doctor to monitor it, they would hear. I had a clip put externally over my eyebrow to monitor the nerve, I had a bit of a bruise there. That’s how Mr Axon does this.
If you google ‘how are nerves monitored in skull base surgery’ , it’ll give a bit more detailed info…
Nerve monitoring is done differently by different doctors. I think mine was done in a similar manner to @Jules as I had little bruises in odd places on my face & neck after my first two surgeries. However, I know that Dr. Hepworth uses a doctor who specializes in nerve monitoring, & the monitors are placed in the tongue, soft palate, face & shoulder. The nerve monitoring doctor sits at a computer & watches for muscle response associated w/ a given nerve & then calls out the number of the associated cranial nerve so Dr. H knows he needs to try a different approach. I heard these details recently from the nerve monitoring specialist herself which is why I know how it’s done for at least one surgeon.
@IJVman For my surgeries with Dr. Nakaji it was a technician who specializes in nerve monitoring who placed the clips externally and monitored the nerve activity. Apparently the nerve activity is translated into sound that Dr. Nakaji was able to hear during the surgery and could then make adjustments. He referred to it as “chatter”.