Hi im new and live in the UK. I have 7.5cm styloids with IJV compression.
I wondered if anyone knew that has seen Mr Hughes how many styloidectomy surgeries he has done? Thanks
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I think he did quite a few (including mine). You can find some stories by searching his name here.
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Can i please ask how your surgery went regarding IJV compression? Thanks
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It went okay but it was just last week so very early to say something if it will help or not.
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@kemaloksuz hi & welcome, I hope that you heal well and that the surgery is successful for you 
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I hope you heal well! Keep us updated 
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Welcome @kemaloksuz. I’m glad your surgery is behind you, & I also wish you good healing with symptoms resolution!
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Hi he removed my left styloid in June this year and I’m back on 30th to remove my right one. I’ve had resolution of my pain and pressure symptoms, but am struggling with visual issues and tinnitus. Hoping round 2 will help! I don’t know how many he’s done, but @Jacqui and @Warrick both had the same surgery with the same month and when I asked JH he said he often does one weekly! I think he’s very experienced, but has his way of removing them, whereby he doesn’t go too close to any of the vascular areas. It’s a straight forward removal I think, don’t expect any extensive investigations into concerns of any compression etc. I think @PatientD was also a Hughes surgery.
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He did mine about 10 weeks ago. He said he removed 4.5cm and removed the entire styloid but, from the scan, it looked like my entire ligament was calcified right to the hyoid. Which I am pretty sure must mean that he didn’t get the entire ligament. He said he got as much as he could get out and that mine went well. But I haven’t really seen improvement in symptoms since the op and don’t know whether that bit of loose ligament could still be compressing something.
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@Jacqui Sorry you haven’t had much improvement. I think I must be 8 weeks or 9 argh I’ve stopped keeping track now! I have heard on groups that a lot of people don’t get resolution until both are out. I still have my worst symptoms. It’s all a bit let’s just see what happens with me. I never got a CTV, which is kind of annoying, but I’ve let it go. I guess we’ll see what happens. I think we had some similar symptoms, so I’ll let you know, in case it helps on any future decisions to go through it again.
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@kemaloksuz Hi welcome! We’ve already chatted outside of the group, but hope you’re recovering well and get some improvement soon.
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Thanks, yes please do keep me posted.
I am getting weird twanging type sensations in the back of my neck that I never had before. I am waiting to see if that means that losing those ligaments has worsened my neck instability. I am reluctant to get the other side removed until I figure it out. Will get some physio and see how it goes.
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@Jacqui Good plan. It’s so hard to make decisions when we don’t get the extensive investigations they seem to get in the States! Plus there’s so much that goes on in that area. I’m so desperate to fix my visual issues and having seen a Neurologist & Neurosurgeon - and had lots more tests, literally nothing comes back apart from that last chunky styloid. The cervical instability I’ve been seeing a physio for and it’s been really helpful! I’ll have to stop for a couple of months though obviously for surgery. I hope it all goes well. I’ll report back I guess next month - hopefully much happier (please 
).
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Best of luck - hope this sorts you out finally!
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@Jacqui , so sorry that the surgery hasn’t made any difference for your symptoms, have you got a follow up appointment with Mr H, or have you had that?
@BabzieAM , not too long away for your second surgery now!
Praying for both of you that symptoms go, & @kemaloksuz how are you doing?
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Thank you, yes I had my follow up appointment last week. Mr Hughes said it’s very unusual to see no improvement by now 
He suggested waiting a year to see if anything changes and not removing the other side if I don’t have improvements. Which I do agree with because I don’t want to further destabilise my neck if it’s not going to help.
I did get the go ahead for physio though (for my nerve damaged shoulder) so I will also ask for some neck stabilising exercises to see if that helps with anything.
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Rough for you, I hope that the physio can help with your shoulder
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I had symptoms that took a year to disappear, @Jacqui, so there’s still time for you to see healing progress. I am sorry you’re still so miserable though. Makes me wonder if there is something else at the root of your symptoms.
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Thank you. I won’t regain use but physio should help it to not stiffen up so that should be helpful I think.
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Thanks, that is encouraging to hear.
I do wonder whether the nerves and blood vessels are being compressed elsewhere though. Shame there is no imaging that shows nerves!
Will start more seriously with neck instability exercises and see if that helps.
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