I’m trying to do as much research as possible before I start to develop a plan of action. I had an MVD on February 28th of this year for assumed glossopharyngeal neuralgia. The fiesta MRI showed clear compression of the nerve at the base of the brain stem and so surgery seemed like the obvious solution to my extreme ear pain.
I’m just over 4 months out and my ear pain is worse than before and only barely controlled by lots of medication (more than before surgery). I posted my 3D images that are from a CT that we took after the MVD, about a month ago. Surprisingly, I do have elongated styloids on the affected side and I’m reeling now that I may have ES as the cause of my pain rather than the compression of the nerve at the brain stem.
I’m trying to read all your posts to gather as much information about questions I need to ask and things that I need to know before I go into surgery, even if it is with a skilled surgeon.
And I’ve read a couple of posts/articles/surgeon websites about people that get MVD for ES and I’m really trying to understand what that means. My understanding was that MVD was for surgeries done inside the skull at the brain stem or thereabouts. How would an MVD work for Eagle syndrome if the compression is in the area where the styloids come off of the skull? Wouldn’t a styloidectomy be the only surgical procedure for eagle syndrome?
Secondly, my experience with the surgeon’s team was that they told me my recovery from the MVD surgery would likely be two weeks of pretty severe pain and then I would get better. They said that some people return to work at 2 weeks. This was so far from the truth and recovery was terrible and I’m still struggling with the trauma of it. When talking to the same surgeon about ES surgery, he mentioned that it’s an outpatient surgery and that I would probably be off of work for 7 days l. Based on my experience and what I’ve read here, that seems really unlikely. Can anyone comment on the recovery time for ES surgery?
Lastly, I would really like to connect with someone that has had MVD and THEN a styloidectomy to discuss the difference in recovery times and success rates and just the general experience. Please feel free to reach out directly if this has been your experience. Thank you, friends.
As you can see, I edited your first sentence & linked your previous post so others can refer to it. I hope you don’t mind.
I’m really sorry your ear pain is worse after the surgery that was supposed to stop it, but I suspect that your very thick & right styloid/stylohyoid ligament calcification could be also impacting your GPN as you mentioned. It’s possible that the MVD surgery shifted the position of the GPN slightly pushing it into the styloid/ligament & thus causing it to be further irritated rather than giving it relief. Unfortunately, short of having a right styloidectomy & getting relief from that, there’s no way to know if that is the cause. It does seem like a logical next step to me.
It sounds like there may be some confusion about what MVD surgery entails among those who say MVD surgery can correct ES. I suspect what the inference is that having a styloidectomy & getting the pressure of the styloid(s)/calcified s-h ligament(s) off the cranial nerves will produce the same type of result an MVD surgery is meant to i.e. an end to the nerve pain because the pressure has been removed from the nerve(s). Does that make sense? The only true solution for ES is to have the styloid(s) cut back as close to the skull base as possible, & if they are calcified, the stylohyoid ligament(s) also need removal.
This subject comes up repeatedly here. Doctors do the surgery but have not been through the recovery so very often vastly underestimate healing times. Plus every human body is different in its ability to heal & in the rate at which it heals. Anything less than 1-4 mos for a good start on recovery is too short of a healing window.
We have members who’ve gone back to work a week or two post op, but we’ve encouraged them to start back part time & ask if they can work from home part time for up to 4-6 weeks post op. The reason for this is it can take a couple of months for a person’s energy to return fully after ES surgery so not only is there pain but also fatigue can be extreme. It is major surgery.
We have several members who’ve had MVD surgery along with ES. Using the magnifying glass image in the upper right, you can search for posts which discuss that. Just type MVD or MVD surgery into the search box & posts where its mentioned will be listed for you to read. You can send a private message to anyone from the posts you read by clicking on their screen name or avatar as they appear above one of that person’s posts.
Do you have anyone in mind to do your ES surgery? I hope this information helps you as you figure out your next steps.
As always, I appreciate your thorough replies. I had done some searching for “Mvd” and will continue to try to find relevant posts. Selfishly, I had hoped that others might respond to my query without my having to dig too deep.
I’m considering surgery. the neurosurgeons that performed my MVD are Jian and Ballough out of Kaiser Sacramento. They are also on the list of recommended surgeons on this group so I feel confident with them as surgeons for the most part. I suppose what I’m struggling with is frustration that we didn’t check for ES first and that they went straight to MVD when something a little less invasive might have done the trick.
Being away from work for 11 weeks was really damaging to my my psyche and my job and my career path in complicated ways and so I am really anxious about putting myself and clients through the ordeal again without having a better outline of what the recovery is going to look like. I’m really hoping that I can find a few people that have gone through both that can share their experiences with me.
I’m sorry that you’re still having the ear pain, and that maybe the MVD surgery wasn’t the right path for you- to be fair, most doctors caution against ES surgery unless really necessary and consider that it has a certain level of risk, so maybe isn’t regarded as that much less invasive compared to MVD surgery?
Unfortunately the couple of members that I can think of who had MVD surgery as well aren’t active on here right now, so you might not get any input from them.
Recovery from ES surgery as @Isaiah_40_31 says is glossed over by doctors quite often. Many doctors especially in the US do the surgery as an outpatient, but not all, don’t be fooled that it’s an easy surgery though. Hopefully the recovery would be easier than from your MVD surgery, I would hope that you’d be back to work after a few weeks depending on what you do. (I had to do some lifting so took a month off, but would’ve been okay to work earlier if it was a desk job). Some members have found talking for long can be painful after surgery, so that’s something to bear in mind, and also driving can be uncomfortable for a few weeks. After my first surgery I couldn’t turn my head well for a few weeks, but that was easier after my second surgery. Chewing or opening your mouth wide can be uncomfortable, so you might need a soft diet for a couple of weeks. It’s really hard to say exactly what recovery would be like though, as it really does vary!
One member @1speechpick had MVD surgery but did have complications, here’s a link to a discussion she posted: Hyoid bone syndrome, here I am again - General - Living with Eagle
You can click on her avatar & send a message to her if you want…
@EmilySyndrome - I’m glad you’ve seen Dr. Jian at Kaiser. We’ve had several members who’ve had vascular ES surgery done by him but haven’t heard much afterward. I hope no news is good news. Since your ES surgery sounds like it may be more straightforward, I hope you get relief from your ear pain/glossopharyngeal nerve impingement.
Please press him to remove your styloid as close to the skull base as possible. I don’t know what his surgical strategy is, but if he only snips the tip off the styloid, that will likely make it short enough to relieve your symptoms.
Hi Emily! I’m so sorry the MVD surgery did not relieve your ear pain. It sounds like you’re considering ES surgery. I had MVD surgery in June of 2022 and had very significant post-op complications (I need to update the group on my progress as I haven’t done that for a while). I did not have ES surgery (I have very small styloids), so I don’t have experience with ES surgery. I hope you find a solution to your pain! We’re routing for you!