I am exactly 2 months post op. Went in and got an updated CTV and my IJV has opened up again which is super exciting! Bad part is that my symptoms have gotten worse over the last month. I have heard that recovery can be weird like this, but it also makes me nervous that I am not making progress even with my IJV opening up.
Anyways, I have gotten some head pressure and dizziness that has gotten 2x worse than pre surgery. Anyone else experience changes with dizziness and new worsened headaches after surgery? Looking for some guidance as I need to know what I should do next if not. Thanks!
What great news that your IJV is open!! Definitely a step in the right direction.
Did you have bilateral surgery, @Millcf (sorry I’ve forgotten if you mentioned it before)? If you haven’t had both styloids removed & your second one is also elongated, you may need that to be removed before you have complete remission of the vascular symptoms. If the remaining styloid isn’t elongated or it’s been removed & your symptoms have gotten worse, you may need to take a blood thinner for a few months to help your body get the blood back to flowing as it should. A number of our VES members have found that something like Plavix is very useful in reducing the vascular symptoms even after surgery as their bodies recovered.
It is true that symptoms can come & go for awhile after surgery, but being that you’re 2 mos. post op, I’d expect the dizziness, head pressure & headaches to be less intense & more infrequent at this point.
I didn’t have VES so I hope some members who’ve had experiences similar to yours share their opinions.
I only had one side done but it really only looked like one side would need to be done. My right side is barely long enough to be considered eagles. It was about 3.1cm from the measurements. I have a mild amount of compression on the right but none due to my styloid on that side.
As for the left, I would have expected my headaches and dizziness to go down by now as well. It seems like my neck is not healing all too fast and I wonder if I have some instability due to my muscles not healing as quickly? I also have not much movement in my left shoulder which is an issue that makes me think I have a bit of nerve issues going on that might also be causing this head pressure as well.
Lastly, it feels like my neck above my incision is puffing out. Almost seems like there is a ball in my neck. I wonder if this might be causing an issue pushing up on nerves causing my headaches to come back worse now. I met with my doctor on Friday and he thought everything looks to be healing up well but I definitely don’t feel that way! Thanks again for your thoughts. Would love to hear others as well with VES symptoms and if it was similar for them as well. Thanks again!
So sorry that you’re feeling worse again…my styloids were compressed both sides, but I did get near instant relief when the worst side was done, that seems to be more unusual though, now we’re seeing quite a few members with jugular compression. (I think my veins had only been compressed for a year though)
Did you ever have any carotid artery involvement as well? That can cause dizziness if there’s still some irritation post-surgery. Dizziness can be caused by irritated nerves as well as VES- the The Vestibulocochlear Nerve, Cranial Nerve VIII, can be compressed by styloids, so possibly still healing after surgery?
Otherwise as you mention you still have swelling like you say it could cause issues. All guess work, so just suggestions I’m afraid! There’s lots of posts recently about lymph drainage & things to help with that, @PatientD has given so good info so that might be helpful for swelling, otherwise as @Isaiah_40_31 says try plavix, or maybe a brief course of steroids?
so to try & reduce/manage post op swelling it’s worth trying lymph drainage (use Vodder.com to see if near you), only see someone qualified (lots of untrained cosmetic lymph practices now). Try to find practice with deep ossilation machine if possible. It will help reduce/heal scar tissue too. If try one session to start will help you know if helps you or not. Watch what they do & then you can treat yourself between sessions.
I did try steroids but in UK my medics won’t give steroids or Plavix, so I used old pills.
The venous structures in your brain & neck are having to adapt to new ways of working & it does take time for brain to figure drainage out & venous structures to adapt. If blood & lymph fluid can’t get out through neck, it backs up inside your brain/skull. Very high pressure & painful. That’s likely the lump you mention.
After my first side was removed my other side felt worse. Like a jet hose turned on in back of skull on that side. My styloids were not that long, but proximity to C1 meant JV compression. Now my other side is removed that is better but I am only at week 3-4 so still get fluid trapped every day. Just have to keep working at it and saw from first side it will improve as body heals. Medic told me last week 3 weeks is only enough for basic tissue repair and that styloidectomy is a significant surgery and will take some time to heal.
I have hired a Bodyflow machine for a month and am using that to move trapped fluid. Lymph has no pump system so needs movement:help to work if broken.
Also if your JV is now open then lying flat enough for yourself jV to open will help drain trapped fluid from skull faster. Can’t remember exact angle from research studies but it’s fairly supine. If you put your hand gently on that side of neck you should feel it open fully as blood flows out/increases. D