I had my left styloid removed to the skull base back in June.
I have vascular involvement however have only had a standard CT scan - haven’t had one with contrast as I’m a sook!
I live in Australia and had my procedure at the Epworth Hospital in Victoria.
I was given the choice of which side I wanted to have removed first. Even though my right side was longer and seemed worse on ct scans I chose to have my left removed. I have worse symptoms on the left. The only symptom that has been relieved for me has been the occipital pain (and only in the left)
I still have severe anxiety inducing dizziness/vertigo
Blurry vision in left eye.
Left eyelid droop as well as pressure behind left eye.
The high pitched tinnitus that was present in the left side for over 10 years now is still there as well as a humming/roaring constant kind of machinery noise in that left side.
Another crippling symptom is the fact that I am unable to lie on my left side which has been the case for close to 8 years due to vertigo/dizziness.
My right side has been giving me a lot of grief since the surgery. Right sided occipital pain is intense however I can deal with the pain via use of pain meds.
The symptom I cannot bear is the dizziness/vertigo. I take 2.5mg diazepam when this issue becomes too much to handle.
I pushed my second surgery out until next year as I’m frightened that during surgery my head has to be placed on the left side to access my right styloid.
My question to whoever can help is basically, What would you all do?
Hi!
I’m sorry that your surgery hasn’t resolved very many symptoms, that is frustrating! It sounds like there are a few possibilities as to what’s going on, and it’s hard to say exactly without seeing a CT, before & after, & ideally a CT with contrast would be useful as it sounds like you could have vascular compression…
Anxiety can be vagus nerve irritation, dizziness/ vertigo if it’s constant could possibly be IJV compression. Otherwise if the dizziness is positional this could be artery compression. The left eyelid droop could well be facial nerve weakness- if it’s there since surgery it could be that the nerve has been damaged a little, this usually resolved with time. If you had the weak eyelid before the surgery, it could be that they styloid has irritated this and now it’s removed it might still be taking a little while to heal- nerves can take even up to a year to improve. Tinnitus is a difficult symptom; it can be from vascular compression but otherwise doesn’t always resolve with surgery.
It could be that your left side styloid wasn’t removed high enough to ease vascular compression- if your IJV was compressed it often needs to removed very close to the skull base to resolve symptoms; some surgeons just shorten the styloid to an ‘average’ length, and this might not have been enough for you. Otherwise there could still be compression from muscles, other blood vessels or nerves. If you had a new CT done with contrast, we might be able to see whether this is the case, or whether it might be that the right side is causing vascular symptoms too.
I guess that laying on the left side if you had a second surgery might aggravate things, while you recover can you lie on your back or sleep propped up?
Personally, I’d want to see what’s going on with the blood vessels, and see how much was removed on the left before I went into surgery with the right side. It could be that enough was removed and the symptoms you’re getting won’t resolve until the right side is done, but it could be you still have issues with the left which weren’t fixed with the first surgery.
I don’t feel I’ve explained all that very well, but hope you can make sense of it?!
Hi Jules,
Thank you so much for your reply and advice.
What you have explained makes perfect sense
My surgeon removed my left styloid to my skull base and performed decompression after.
My eyelid was drooping well before the surgery though.
You are correct in that I need a CT with contrast. My Mother was highly anaphylactic to iodine which makes me scared that I wall be the same.
I’m going to have to ‘bite the bullet’ and go ahead with a CT including contrast.
Thank you once again for your insight. I very much appreciate it
Jo
@Joanna1 - Welcome to our forum! I, too, am very sorry you didn’t get better results from your surgery. When you said your IJV decompression was done after the styloidectomy, do you know what was done to allow it to open? Often, the transverse process of the C1 vertebra is a bigger player in IJV compression than the styloid so a bit of it needs to be shaved off to give the IJV more room than just styloid removal gives it. As @Jules mentioned, there can be other causes of compression that also need to be removed for the IJV to open down its full length. The soft tissue compressions can occur further away from the skull base, & some surgeons don’t check for those. That’s where your CT w/ contrast will be helpful as it will show where compressions still exist.
I understand your reason for fearing the iodine contrast. Just make sure the radiology tech is aware of the potential for you to have a bad reaction so they can be at the ready to help you, just in case. You aren’t your mother so hopefully, her response to iodine contrast will not be yours, too.
I had symptoms very similar to yours i.e. pressure behind my left eye, roaring tinnitus, vertigo/dizziness which started between my styloidectomies after I had a cycling accident w/ a head injury. I found out 6 yrs after the fact, & after losing most of the hearing in my left ear, that those symptoms were from IJV compression which had resulted from my cycling injury but had gone undetected/undiagnosed by the ENT surgeon who did my initial styloidectomies, thus it wasn’t dealt with. Nine years after my second styloidectomy, I finally had the surgery to decompress my left IJV. My dizziness/vertigo stopped as did the progression of my hearing loss. The eye pressure went away after my initial left styloidectomy.
Firstly I don’t know what my surgeon did when he decompressed my IJV. I don’t even know which vessels were compressed. He doesn’t give out that information.
He is a magnificent otolaryngologist but just does what he needs to and doesn’t look into the whys and why nots.
He did say something about placing me in the trendelenburg position to check the flow.
When I went back to him postoperatively he asked me if I’d noticed any changes to which I told him that the only thing that has changed is the pain that was in that left occipital region and the throat stabbing. He replied that he was hesitant to perform the right side due to the lack of symptom relief. I believe that if the pain is relieved then that’s a bonus so I am willing to go ahead with the other side.
This surgeon removes the styloid completely from the skull base. He does not use a drain and does not shave the C1.
I’m so glad your eye pressure was relieved. I don’t understand why none of my other symptoms have gone away and I really don’t like the extra noises in my ear/head that weren’t there before.
I am hoping that removing right styloid might help with other symptoms on the left maybe?
The dizziness and vertigo are my worst symptoms and are ruining my life. I can’t go anywhere and am confined to my house. I just want some relief.
My pain physician wants me to see a vascular head and neck surgeon but we cannot find one. I guess this is all so new and even the medical world are learning.
You are correct though. I need to be brave and have the CT with contrast.
Thanks again for your reply. I really appreciate it.
Kindly
Jo
If it was me I would feel it’s worth having the other side removed to see what else improves, if you have / had bilateral IJV compression then it may well help get you improved flow…
I understand your reluctance to have a CT with contrast, that sounds like you made a sensible decision, nothing to do with being brave or not! I wonder if you could have a patch test done on your skin with iodine first to see if there’s any reaction? Safer than IV…
Do you sleep propped up? That can help with head pressure if your dizziness is to do with that, & some members have found that having blood thinners can help, so that might be worth a try? And there have been a few posts about vestibular rehab, I don’t know whether that might help There are clips on YouTube which show how to do this at home? Visual & proprioceptive disturbances - General - Living with Eagle
@Joanna1 -
I completely agree w/ @Jules that it’s worthwhile getting your second styloid removed even if you still have symptoms from the first side. I had “cross over” symptoms where my remaining styloid caused symptoms on the “styloidless” side once I’d had my first surgery. Though it’s not a guarantee that removing the other styloid will stop the symptoms on the opposite side, it could well reduce them.
Thank you again for replying
I’m very close to attending the Emergency Dept where I had my first surgery. It’s been a really tough couple of days. The roaring in my ear is bow in times with my heartbeat and my neck has that choking sensation back. I feel quite unwell.
I’m giving it a few more days and then I will make the decision.
I will endeavor to get myself a referral for a CT with contrast prior to having my second surgery in February.
Thank you both for your reassurance and help
@Joanna1 - I’m very sorry, too, that you’re having a symptoms flare. I am praying for it to subside soon so you are more comfortable. Have you tried icing your neck 15 min every 2 hrs w/ a thin towel between your skin & ice pack), & are you sleeping w/ your head elevated at night? Both of those things can help reduce symptoms. If ice makes symptoms worse, you can try heat.
