Thanks for the message; yeah, I really was impressed with Dr Aghayev on the phone. He explained things clearly and in detail, even though I told him I wasn’t sure if I was willing to travel to Turkey for the surgery as I have a couple of options in London to consider. I tried to pay for the call, but they told me not to worry about it (I feel a little bad)
You are correct, he did seem as if it was a given that C1 would be shaved. I would prefer only to have what I need taken out taken out. But still, major credit to him for speaking to me
Anyway I got a reply from the London clinic, and they have adjusted the fee slightly lower, taken out the “partial laryngectomy”, but still added a bit, which I am ok with as Dr Hughes has justified it. £10.4k in total.
Good that Mr Hughes has amended the quote & hopefully you can clarify everything with him…And double check his opinion on your hyoid bone processes? @Val7426 thanks for helping out with all the info about Dr Aghayev! It certainly sounds as if the C1 shave might be needed for your husband with his vascular symptoms…it doesn’t sound as though @virenlondon has VES, no symptoms anyway although Dr Aghayev saw something…so a C1 shave could well be unnecessary…
So before my procedure, I will have one appointment with the doctor where I plan to ask him questions (compiled by myself and Chatgpt) about the procedure and about the post-procedure.
I think the list of questions is pretty exhaustive and covers what I want to know, but I may be missing some things. Is there anything you think I may have missed?
Just FYI, I am having "
PACKAGE REMOVAL OF LESION OF PARA-PHARYNGEAL and THERAPEUTIC PANENDOSCOPY +/- EXCISION BIOPSY, EXCISION OR DESTRUCTION OF LESIONS"
.
Questions About the Procedure
Overview of the Procedure
Could you please provide a brief outline of the procedure, including each key step?
Panendoscopy
What exactly is the panendoscopy, and why is it being included as part of my treatment?
What are you hoping to observe or achieve with the panendoscopy?
Is it primarily diagnostic, or does it also have a therapeutic purpose?
Styloid Process Removal
During the removal of the styloid process, will you be able to see if it is impinging on any structures, such as muscles or nerves, that could explain my symptoms (severe pain during phonation and physical exertion)?
Will you remove the entire right styloid process up to its base near the skull, or will only a portion of it be shaved off?
Do you plan to address or inspect the left styloid process during this procedure, or will that be considered later if symptoms persist?
Hyoid Bone Concerns
The CT report noted a “slightly prominent greater cornua” of my hyoid bone. Could this potentially contribute to my symptoms, or pose a problem during surgery?
If the hyoid bone is found to be contributing to my symptoms, could this be addressed in the same procedure?
Scarring from Initial Trauma
Could the initial trauma have caused any internal scarring in the area?
If so, would you be able to see this scarring during the procedure?
If visible scarring is found, is there anything you can do to reduce or address it during surgery?
Goals and Outcomes
Are there any specific markers or signs during the surgery that would confirm the styloid was causing my pain on phonation / exertion?
Risks and Complications
Are there any specific risks associated with removing the styloid process, especially given the calcified stylohyoid ligament
What is the risk of damaging nearby structures like the glossopharyngeal or vagus nerve during surgery?
What steps do you take to minimize these risks?
Questions About post-Procedure
Questions About the Post-Surgery Period
1. Immediate Post-Surgery Recovery
What kind of pain or discomfort should I expect immediately after the surgery?
Will I have stitches, and if so, when will they be removed?
Will I need to be on a liquid or soft-food diet after surgery, and for how long?
Are there specific medications I will need to take post-surgery (e.g., painkillers, antibiotics)?
Will I require any post-surgery imaging to confirm the procedure was successful?
2. Activity Restrictions
When will I be able to resume light daily activities, such as walking or household tasks?
Are there any movements or activities I should avoid for the first few weeks to ensure proper healing?
How long should I wait before returning to work or driving?
3. Symptoms After Surgery
Will I experience swelling, numbness, or bruising in the surgical area? If so, how long should I expect these symptoms to last?
Are there signs of complications (e.g., excessive pain, bleeding, infection) I should look out for, and what should I do if they occur?
4. Follow-Up Care
How soon after the surgery will I need to come in for a follow-up appointment?
What will the follow-up entail? (e.g., physical exam, imaging, or symptom evaluation)
5. Long-Term Recovery and Scarring
Is there any risk of my styloid process growing back or causing issues again in the future?
What steps can I take after surgery to reduce the appearance of the scar?
Are there specific products, such as scar creams, silicone sheets, or other treatments, that you recommend?
How soon after surgery can I begin applying these treatments?
Likelihood of Visible Scarring
Based on your experience, how noticeable are the scars from this type of surgery for most patients?
Are there any factors specific to me (e.g., skin type, age, or the surgical approach) that might affect the visibility of my scar?
Long-Term Scar Outcomes
Will the scar naturally fade over time, and if so, how long does this typically take?
Are there any warning signs of abnormal scar formation (e.g., keloids or hypertrophic scars) that I should watch for during recovery?
6. Pain Management
How should I manage post-surgery pain?
Are there non-medication techniques, such as cold/warm compresses, that could help?
What should I do if the pain persists beyond the expected recovery period?
7. Potential Complications
What are the most common complications after this surgery, and how are they treated?
Is there a risk of nerve damage, and if so, what symptoms would indicate this?
8. Support
Will I need special equipment or support (e.g., dietary supplements, physical therapy tools) during recovery?
9. Contingency Planning
If my symptoms persist or new symptoms arise after surgery, what would be the next steps?
Would additional procedures or therapies be necessary, and what would they involve?
That is a very thorough set of questions @virenlondon. I’m not sure Mr. Hughes will give you time to ask them all so I’ll try to answer some of them so you can put them “on the back burner” in case you run out of time at your appointment.
Very thorough! I would clarify that he will remove the calcified portion of the stylo-hyoid ligament as well as shorten the styloid process too…
He would only be able to look at the left side process during the op if he made a second incision, so I don’t think that will happen…
Recovery does vary immensely, and many of the doctors gloss over it & don’t understand what it can be like, so I would take any answers he gives you to those questions with a very big pinch of salt! For example after my first surgery I couldn’t open my mouth wide or chew doe a weeks or so, but 2nd surgery I didn’t have that at all! And first surgery my neck was really stiff and uncomfortable to turn so I couldn’t drive safely for a few weeks, but didn’t have that at all second time around! Same surgeon, same surgical method!
Yeah, I think it may be a bit too much, and there are some questions in there which I am pretty sure would be unknown at this stage, so I have taken a few of the questions out.
I have a question: I have a neck support/brace, similar to the one in the picture:
Would that be useful immediately after surgery for the first 3 or 4 days to help keep my neck still? I will also ask Dr. Hughes, but just wondering what people here think.
Personally I wouldn’t have used a brace; it’s fine to move your neck a bit, & I think it helps to keep the muscles from getting very stiff. I think if you were to wear that you’d end up even more stiff than you might be after surgery. Walking about, reading, watching TV, very simple jobs around the house are fine after surgery, lifting anything much is a no-no, definitely no sweeping, gardening or decorating though, some of those have been tried to our cost Not saying you’d do serious damage or anything with those activities, but it would set back healing!
@virenlondon - I agree w/ what @Jules said. I have had 3 ES surgeries & was told to do gentle head movements in all directions starting right after surgery to help w/ muscle flexibility & circulation.
I will still go ahead with the surgery with Dr Hughes (privately), but has just knocked my confidence and that the surgery won’t improve symptoms.
However, I struggle to see how with 6cm processes how the NHS can so confidently rule it out. Also, I have read on this forum that many doctors simply rule it out without actually investigating.
DO NOT let your confidence be shaken about surgery helping you, @virenlondon. All I can say is that whoever in the NHS reviewed your case, clearly has no understanding of what defines ES or of the multitudinous symptoms it can cause because if (s)he did, that person would have expedited your surgery rather than declining it. I wonder if they have a “quota” of a particular surgery they’re willing to cover each year, & the ES surgery quota for this year has been met so anyone requesting coverage at the end of the year is getting the same lame letter you got?!
Since Mr. Hughes has offered you surgery, you should definitely go for it. He doesn’t offer it to everyone who comes to him thinking they have ES.
Clearly they’ve never read the definition of ES!
‘Eagle Syndrome is a rare condition caused by an elongated or deviated styloid process, which interferes with nearby anatomical structures and causes pain in the oropharynx region and the face’ - is that not what you have?!
Mr Hughes is knowledgeable about ES, and he’s offered you surgery, as @Isaiah_40_31 says, he hasn’t done that for everyone, so even with you paying privately he must feel that it’ll help at least some of your symptoms…
Hi - 2 things: firstly NHS trusts are using advice and guidance and triaging and/or rejecting referrals for all sorts of specialties so this could be the case for you if your Trust has to refer you out of area?
Secondly, what criteria do radiologists use to define what is elongated as when styloids are longer than the text book, they are being classed as “mildly elongated “. What exactly is mildly elongated as opposed to moderately, very, massively etc etc? Very few mention angle or width etc, patients get ambiguous responses and little help or guidance. Push, push and push again!
I found out that in Canada, anything considered as elongated is 3cm+. I don’t think here we distinguish as mild, long, massive or dragon’s tooth. So if a scan shows the styloid is elongated, at least here, you know it’s a minimum of 3cm.
My husband’s first scan noted “elongated” but they were not measured. He had a second scan specifically for the purpose of having them measured and they were 5cm and 6cm.
Day 0 - they asked me to talk to see how talking is. At the moment, I still get pain in the same area where I used get pain, so currently, don’t feel too much improvement…but I’m hoping that’s cos the styloid was pressing it for so long, it needs a bit of time to heal before I can talk without pain. i have felt within my mouth, and that protruding styloid has definitely gone.
Other general post surgery stuff seems ok. I can move my neck a little. I can smile (seemingly no facial nerve injury), and had a a bit of water (swallowing seems normal)
Yes, I didn’t take any notice of it, and still got the surgery done (today actually), but it was just annoying just just dismissed it without any thought
Congratulations for making the leap & going ahead with surgery @virenlondon! It is very rare that symptoms are totally gone never to return right when one awakens from surgery. It can take from a couple of weeks to a number of months for the worst symptoms to gradually go away so you spoke wisely about expecting that.
The first week after surgery is the most painful. Remember to sleep & ready with your head elevated up to 30°, ice your neck for 15 min every couple of hours & take your pain meds on schedule for the first several days after surgery & take 2-4 short walks each day once you’re home from the hospital. A laxative will be helpful if you’re takin Rx pain meds.
Not saying you’d do serious damage or anything with those activities, but it would set back healing!
