Question for those who’ve had one styloid out please…
My worst symptoms are derealization (24/7 never stops) tinnitus (loud high pitched noise plus loud humming - it gives me earache) and visual issues (double vision, trouble focusing & visual snow). I have others, pain, dizziness, balance issues, numbness in arms.
I believe I may have some IJV compression and possible mild IIH. I do also have mild CCI.
I’m having the side done that is causing the most discomfort soon.
Realistically what might I be able to expect with regards to reduction of symptoms? Has anyone else had one side only done and had relief from the above? Was it noticed soon or take a while? I have no idea what to expect.
I’ve not had visual issues, so can’t comment on that. For me the worst symptoms were the head pressure, feeling off balance, & weird sort of sucking/ rolling up sensation in my head- they went pretty quickly after surgery, I think almost straight away, but that is very unusual, usually it can take a while for swelling to go down enough to allow the IJV to stay open. So don’t be too despondent if symptoms don’t subside immediately. The pain turning my neck went fairly quickly, within a couple of weeks as I think obviously there was pain too from the surgery . Nerve pain in my face took longer, and hasn’t ever gone completely.
Realistically, you won’t be able to tell how well the surgery has gone for a few months; if you think along this timeline then it won’t be a worry, and anything else is a bonus!
Hi there! I had one styloid removed so far. It was the shorter of the two but the trajectory was more worrisome as it appeared to be hitting my spinal chord.
I have had some other health issues that have slowed my healing process down - I had to have a nasogastric tube placed twice and it caused major swelling above the incision and ear and throat pain - this has made my healing a little slower than most I think. It was hard to tell for a bit what was getting better and what was from the repeat tube. I had my surgery back in March with Dr. Hackman. Before the tube, I felt like my healing was going well.
I had and still have visual snow. It seems better and I have not had the severe symptoms since all the major swelling sent down. The major symptoms it relieved were severe after images - I still have after images but not to the point of creating trails. Derealization has happened a couple of times since surgery, it mostly happens to me in the car. But this is also significantly less than before surgery. I still have constant static, that pretty much didn’t change. Light sensitivity and night blindness have had mild improvements but are better. My balance overall is better but still not 100%. I don’t feel like I’m falling when I’m not as often anymore.
A weird thing happened, when I first woke up my visual snow was completely gone but returned within a few hours. It was a roller coaster emotionally because the visual symptoms are really debilitating. I’ve heard anesthesia can do that which would indicate a different problem causing the visual snow.
I have not had any tinnitus since all the major swelling went down in that ear, however my other ear has now kicked up. I don’t know if the lack of a styloid on the one side is now putting more pressure on the other side.
I still have random ear pain but it is no longer constant. I think again the nasogastric tube caused some additional swelling to the recent surgery site.
My left arm numbness is gone. I also would get a lot of twitches in that hand and they haven’t resurfaced since my surgery.
I was also getting a lot of ice-pick headaches pre-surgery that have not happened since surgery.
Another random thing that used to happen was when I would drink anything more than a few sips my head would pound and feel like it was going to explode. No idea what that was but it’s gone.
It solved or decreased a decent amount of my concerns almost immediately. My team of doctors aren’t going to investigate anything else until I have the other side out.
@ectocake Thank you so much for sharing! My visual issues are my worst symptom (derealization/tunnel vision/can’t focus/double vision/after images). None of which I had before these issues. It’s reassuring to hear you had some relief!
Both my styloids are almost 5cm long, so I am thinking I may need them both done for significant improvement, but pain wise everything is on the left (the first side out).
I can totally relate to the balance issues! I wonder if there wasn’t such a difference in how each side of my head felt and the bad vision, whether that would fix that. I guess time will tell!
WOW, @ectocake! You’ve gotten some great results from your first surgery. That’s really fantastic news!!
We have noted in bilateral cases that once one styloid is removed, the symptoms the other styloid is causing often flare up including some that may cross over to the side that’s been shortened. Sometimes the symptoms from the remaining styloid become much more intense than prior to the first styloidectomy. As you noted, this could be because there is a change in the "balance’ of the soft tissues or even cervical spine w/ one styloid gone so the remaining styloid is putting more pressure on nerves &/or vascular tissues than with both styloids present.
I think you’re likely to get resolution or at least reduction of your remaining symptoms once your other styloid is removed.
It seems to be true for me. The only thing I knew for sure was on the remaining side pre-surgery was the pressure behind my ear and tinnitus. Now some symptoms remain in my throat and eye that I suspect are from the remaining side. I’m hopeful that some remaining visual and neurological symptoms could be tied to it.
I follow up with Dr. Hackman in a few weeks and I’m sure we’ll talk through it. But I’m hoping to have the second surgery this year since I already hit my deductible.
