Yeah, now I realise why I paid so much for this CT of only 1 part. I had a set of 5 tests (CTA Neck, MRI Neck, MRI Cervical Spine, MRI 2x TMJ) back in august as a self refer patient to LycaHealth, who provide medical imaging, but the report was so short and didnt really cover much (although it did mention ossified styloid process).
This 1 CT cost more than all the other 5 put together.
Will have a few appointments over the next couple weeks; got the followup appointment with the doc who suggested the styloids could be the issue later today.
I actually also have an NHS Neurology appointment on Thursday (Booked over 6 months ago!!!) so hoping this new development (or least identification of the potential issue) can help them get their skates on. After this, hopefully can see Dr Hughes in the next few days.
Thanks. Yeah, first few consultations, will just go private until they can say to some certainty what the issue is, and how to go about fixing it. Obviously pricey (£300 for a 20 min session), but after over 4 years of this (3 of them almost completely silent), I just need answers.
I do!! I get awful head and throat pain after speaking. I feel like my head is in a vice and it just keeps on getting squeezed tighter and tighter with the vice. I am assuming its due to my thyroid impinging on my jugular that shifted as well as crowding my omhyoid muscle.
Nice pictures, @virenlondon. Good job converting your images to 3D. Your right styloid is VERY long & a bit thick at the top/pointed at the bottom. The left side looks to me like your styloid is a little elongated & then below it part of your stylohyoid ligament has calcified. We’ve seen this in some of our members i.e. the styloid itself isn’t super long but further down the stylohyoid ligament has calcified. Elongated styloids & partially calcified ligaments cause rigidity in the ligament which in turn causes the hyoid bone to be tethered, or somewhat so, & unable to move freely as it needs to for swallowing, talking, breathing, coughing, burping, etc. This is another cause of the pain ES can create.
So the doc said (and I can feel it) I have a tubular bony structure palpable in my tonsillar fossa, which seems to be consistent with a styloid process.
Good luck! There is a London surgeon - Jonathan Hughes and also Patrick Axon who is at Addenbrooks. Both are experienced in doing styloidectomy.
You are not alone in spending time and money on wildly differing diagnoses so hopefully you might get an answer soon along with treatment.
I’m 4 years into a nightmare and believe my age is now stopping me getting any help. Because of c spine issues, ES won’t be looked at but still unable to get an appt. ……… be strong xx
I agree with @Isaiah_40_31 , the right side looks like the stylo-hyoid ligament has calcified & made one long process, there’s a little gap in the left before the ligament calcified but both certainly look capable of causing symptoms!
Hope you can get some answers soon…
So I have had a face-to-face consultation with Dr Jonathan Hughes, and he agreed that I can do surgery to remove right side styloid at Cleveland clinic early next month.
However, I had a online video chat with Dr Kamran Aghayev jsut a few minutes ago, and I felt he explained everything a bit better.( maybe because he talked for about 45 mins, and the appointment with Dr Hughes was only 20 mins).
Dr Aghayev also said he would shave off c1, which Dr Hughes didn’t mention at all.
I am very torn at what to do. I live in South London, so obviously a central London procedure would be so much easier than going to Turkey, and if there are any complications, I reckon I would be better off in London as my family are here.
Obviously I do not know and cannot compare the skill level of each surgeon. I don’t know what to do. I have to choose one.
That’s a really difficult decision! Obviously we’re not doctors on here, just commenting on what we can see from looking at lots of members’ CT images, but just wondering as to whether your C1 processes are an issue? Your latest images aren’t with contrast so can’t say whether you have any vascular issues which is usually the reason for C1 needing to be shaved, usually on a CT you would see only a small gap between the C1 process and the styloid process if this is an issue but it doesn’t look like this is the case?
Obviously this is a big decision for you, & you definitely need to get it right, so if it was me I’d want to get clarity from both doctors about how big a gap there is between the styloid & C1, & certainly what Dr Aghayev’s reasons are for mentioning a C1 shave… It’s only something which has come up in more recent times as being necessary in some cases, and there’s still some debate as to whether it could potentially contribute to instability in the neck, so it’s not something which you’d want done unless there’s significant IJV compression. (If you’re not sure if you have that or not, the symptoms are dizziness or off balance feeling, head or ear pressure, ears feeling blocked like you’re underwater, brain fog, there’s more info in the Newbies Guide Section about common symptoms).
Did you get the chance to ask if either of the doctors think your slightly elongated hyoid bone processes could be an issue?
You can search the discussions for mentions of each doctor, both doctors have done surgeries for members recently, mixed results for both doctors as unfortunately sometimes the members who’ve had surgery have more than just ES going on so sometimes it’s just one surgery step in a long journey.
I didn’t ask about hyoid. I really should actually. Thanks for the reminder. I will ask at the next appointment. But I have no swallowing issues.
Dr Aghayev said I had some compression, but I don’t have any of the symptoms you mentioned for ijv compression. Just severe pain on phonation and slight physical exertion. Basically, if I stayed in bed all day and did nothing, I wouldn’t have any symptoms.
I got the 2 doctors from this forum, which shows how great a resource this forum is. Yes it is a tough decision, as Dr Aghayev really did explain things so much more clearly. Surgeries for Dr Hughes would be early Dec and surgery with Dr Aghayev would be mid Dec. I have had this for over 4 years so a week here or there is not in my decision making (although sooner would be nice haha).
I haven’t had quotes from the London clinic, but I think overall, going to Turkey would be cheaper, even with flights and hotel. But doing this right is the main thing.
Mr. Hughes doesn’t do C1 shaving. Our members who’ve needed C1 shaved to help w/ IJV compression have done a follow-up or pre-ES surgery, C1 shave surgery w/ Mr. Timothy who’s also in London. It would be good to know if Dr. Aghayev routinely shaves C1 or if he would leave it alone if he sees jugular blood flow is fine once the styloid(s) is/are removed - especially because you don’t have vascular symptoms.
Crazy that a trip to Turkey for surgery would be cheaper than out of pocket in London. I’m sorry for that!
So just got the quote. It’s a lot more than I expected …
I read in a previous post (from 2 years ago) that Dr Hughes did the procedure at Cleveland clinic for around 6k. I was expecting an increase from that, but not this much.
I will do the research on the various codes, but why do some seem repetitive?
So I have just sent a message to Dr Hughes’ secretary: -
The 2 points I made were why does it seem to be 2 procedures instead of just 1; and what the 2N means? Does it mean 2 nights? (as Dr Hughes said I would be in for only one).
Is there anything else I should enquire about?
This is the message:
I hope this message finds you well.
I am reaching out regarding my upcoming procedure, which, to my understanding, is scheduled solely for the removal of the styloid process. Upon reviewing the billing details, I noticed that charges were included for both a partial laryngectomy and removal of a lesion in the para-pharyngeal space. I wanted to check if there might be a billing error. Could you clarify why I am being billed for two procedures when I am only scheduled to have one (removal of the right styloid process)?
Could you please confirm with Dr Hughes that the planned procedure is limited to the styloid process removal? If possible, could you also forward this inquiry to the hospital’s billing department to review and adjust any unrelated charges as needed?
Additionally, I saw on the bill the note of ‘2N’. Does this mean 2 nights? I was told by Dr Hughes that it would just be 1 night in the hospital.
If there are any questions or clarifications needed, please feel free to contact my wife at 07XXXXXXXXX.
Hi there!
So… I can tell you that a C1 shave it part of Dr. Kamran’s protocol. I actually asked him the same question yesterday.
We’re from Vancouver, Canada, and my husband is having surgery with Dr. Kamran on December 10. He reallllllllllly didn’t want to have the C1 shaved. We asked yesterday if the C1 shave was absolutely necessary. Dr. Kamran’s answer was a C1 shave is part of his regular protocol so the jugular vein has more room to expand. And in JC’s case, the IJV compression between his styloid and C1 is so extreme that the shave is unavoidable and it is necessary. But I get the sense that Dr. Kamran’s approach is more aggressive than some, and he thinks this will give a better long-term outcome.
I’ve spoken with several people privately on this site and ultimately come to the conclusion, your body and your choice. Some people are fine with the C1 shave and believe it will give them a better outcome and less chance of a secondary problem. Some are hesitant and want to approach with caution, they would rather a second surgery if warranted in the future. You have to make the choice that’s going to be best for you.
Feel free to reach out if you have any questions. We’ve been planning for several weeks for our trip to Istanbul, and I am moderately familiar with their health care system and the area. As the Turks say, geçmiş olsun (get well soon)
I agree that’s odd wording for a styloidectomy. You are wise to question what it is they have you signed up for during surgery. I had a consult for iJV compression a year ago & a few months later checked my office visit notes online & found I’d had a nasal ablation of some sort. I’d had no procedures done at my appointment so was quite surprised. All we did was look at my CT scan, my squashed jugular & discussed surgery. My insurance had already paid for the procedure when I discovered the error so the med ofc billing dept had to amend their bill & probably had to give back the $ insurance had paid them.
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