I am London based and I have been experiencing odd symptoms for over 3 years which I now know could be related to ESP.
I have had a struggle to receive a diagnosis, but this is not uncommon I gather.
Eventually the syndrome was picked up by a locum doctor in February of this year using scans from 3 years ago. The elongated Styloids were present and clear on the scans, but had been missed.
There followed a period of 3 months which I was seen by a variety of consultants one of whom told me he didn’t buy into the diagnosis of Eagles syndrome and others who had never heard of it.
My styloid lengths are 6cm on the left and 8cm on the right.
I seem to be only symptomatic on the left at this present time.
I will cut a long story short and get to my point, but I have to say that it is me that has been giving Information to my clinical team from the start and it is me that has had to shout loud to be heard.
This doesn’t sit well with me and I am incredibly nervous about my operation next week.
My consultant ( who is a highly skilled oral max head and neck cancer specialist) had to do some homework and speak to colleagues before a surgical plan could be made, but there are a few points in particular that do not seem right to me especially as I too have done my homework.
He is going to do an Intra-oral approach ( left side) with tonsillectomy and styloidectomy.
He is unsure how close to the skull base he will get. I have stressed to him how important it is to get as much as possible, but I am unsure how relevant he sees this to be.
He made a comment that he may well fracture the process and leave it in situ. At the time I didn’t know that this is not advised. Can someone tell me a bit more information regarding why this is not advised so that I can have an informed discussion with him next Tuesday?
I realise having that kind of discussion on the morning of the operation is not great, but it is nigh on impossible to get to speak to him before.
I know he is a very accomplished surgeon in his field and that he is experienced in working in that area of the body, but I Just feel nervous that there is an underestimation of how significant ESP is in relation to health.
All I can say is YIKES!! First, you have very long styloids. It is possible that your styloids are so long because your stylohyoid ligament is partially calcified as well thus adding to the styloid length. ES surgeons “in the know” remove the s-h ligament w/ the styloid to prevent any opportunity for further calcification. Secondly, breaking the styloids into smaller pieces & leaving them there would open you up for a whole new world of symptoms & problems. Many ES symptoms come from pressure on cranial nerves & restriction of vascular tissues in the area where the styloids reside. Leaving pieces in place would not necessarily reduce or resolve any of that. The styloid process(es) & s-h ligament(s) need to be removed for the best outcome.
If I were you, I’d cancel the surgery & make an appointment w/ Mr. Axon in Cambridge. He has done a number of ES surgeries & is quite experienced. He goes via the external route. There is no reason your tonsils need to be removed unless they are enlarged or you have chronic tonsillitis. I believe (& I could be wrong) that your current surgeon plans to remove them to get them out of the way so he can access your throat to do the intraoral styloid destruction.
I’m sorry if I sound harsh, but I guarantee you this is not a surgery you want to go through more than twice (once for each side - which is the choice of the more experienced doctors - the do not do bilateral surgery all at once). I expect that even if you were to have relief of some of your symptoms after this surgery, new symptoms would crop up that would eventually lead to need for a future round of surgeries to extract what was left in your neck.
I will pray for you to have wisdom as to the best way to proceed.
I do agree with Isaiah40:31, in that you shouldn’t agree to surgery if there’s a possibility of the surgeon fracturing the styloid & leaving the piece in- can you imagine a surgeon leaving pieces of fractured bone in say if they were repairing a leg or pelvic injury? Of course not- those pieces can float about & do damage, cause irritation & inflammation etc. Not to mention the reason why ES is so painful is because there are so many cranial nerves exiting the skull in the region, which can get inflamed by the styloids, plus the major veins & arteries which also supply the brain… we have had a couple of members who’ve had this surgery without realising, & they’ve ended up worse than before…
I would agree that you consider being referred to Mr Axon at Addenbrooks in Cambridge, as he’s performed this op many times externally, although there will be a long wait, or at the very least ask your consultant to speak to him about his surgical technique. It sounds like your doctor is very skilled, so would be more than capable of doing the surgery, but sounds like he needs to read up on ES a lot more!
I’m sure you’ve read up about the pros & cons of external vs intra-oral- mainly that external surgery has a better view of the styloid & so more can be removed.
Let us know how you get on!
Thank you both for your response. You are confirming my thoughts.
I am trying to get hold of my consultant to have a conversation in advance of Tuesday and I shall let you know.
So glad you reached out to us before doing something you might seriously regret.
I’ll be praying for you to have a good conversation w/ your consultant before Tues.
Yes, your concerns are quite valid. I would be taking a few steps back to get more information. If someone doesn’t have time to answer my questions, I don’t feel comfortable. Praying.
Though I have not yet been scheduled for my surgery, some of the things you said set off alarms for me. If this were the doctor I am to see in a couple of weeks, I would NOT let him do my surgery. Please get a 2nd opinion on this…no harm in waiting a while longer for your peace of mind. Something to ponder…what are you going to do on the day of the surgery when you have that discussion and you don’t like what he has to say?
Surgery has been postponed by my consultant as a result of my concerns. I am meeting with him on 21st August to discuss further.
I am really glad I had the confidence to query the surgical plan. Thanks guys, I shall update in due course.
That’s good news Aleabee, so glad you were able to stand your ground on this…I think you need to be absolutely comfortable with your surgeon and the surgery. When the time is right, you will know it!
Shame if you’re in pain to have to wait, but definitely the right thing to do until you’re comfortable with his plan.
Good for you!! You did the right thing. Hoping he does some research & revises his surgical strategy if travel to another doctor is not in your plans.
I saw my consultant today, and, as promised, I am updating all you other Eagles.
I believe that my Journey should be shared, as others have shared theirs, in the hope that together we can understand, not just the syndrome itself, but the complexities involved in getting the right treatment.
Thanks to your support, I had the courage to question the surgical plan suggested by my consultant.
I kind of knew myself that it wasn’t right, but hearing from the forum gave me a little more backbone. Thank you.
I have to mention that my consultant is a very good surgeon in his field and I am in no way disparaging of that.
He is also a very nice man who did not mind, in the slightest, my querying his approach. Phew!
He admits that there is a shortage of data on out come measures intra oral vs extra oral approach and that there is not a consensus from clinicians regarding symptoms and even the existence of Eagles.
We shared over an hour of conversation regarding the issue of Eagles, his chosen surgical approach, benefits of removing as much of the ESP vs just removing the tip, fracturing and leaving in situ vs total removal and we debated the scant literature available.
Thankfully he recognised my concerns.
He stated that he would prefer to just remove a little of the ESP and if this did not help then go in for a more invasive procedure which is extra oral at a later date.
This doesn’t work for me.
It is worth noting that I also got results of a CT scan of the inner ear which has diagnosed Dehiscence of the SCC left side. 3mm.
He admits he doesn’t know how relevant this is.
He has admitted he may not be the right surgeon and is referring me to Dr Axon at Addenbrokes.
I think it is a successful out come and I feel comfortable with this decision.
I now have to wait.
Take care everyone x
I’m glad that the doctor was understanding & that he accepted your questioning well, that must be a relief at least. Don’t know much about the dehiscence issue, only that it rings a bell (no tinnitus pun intended!)- I think a couple of other members a while back may have been also diagnosed with this & one definitely had surgery- you could do a search about that. But as Mr Axon is a skull base surgeon & otolaryngologist I’m sure he’ll be able to help with this as well.
I hope that you don’t have to wait too long for your apt with Mr Axon, I think you’ve made the right decision!
I’m glad you were able to find this site and know what questions to ask. I had a intra oral surgery for this about 2.5 years ago and I wish I would have visited this site before it. I was just so desperate to get some relief that I just went with what the Dr said. He wound up just clipping off the tip due to fear of damaging a nerve. Though I’m glad he didn’t make a bad thing worse, I wish I would have known enough to look for a more experienced surgeon. He referred me to Johns Hopkins in Baltimore, but that turned out to be a wasted trip. They had a neurologist talk to me who knew nothing about ES and their ENT department wasn’t interested in this. Finally, after spending some time reading the testimonials on this site, I have an early flight tomorrow to San Jose, CA where Dr Samji has agreed to remove my left SP and ligament. May the good Lord guide his hands:pray:
I will be praying for you during your surgery on Monday. God has truly used Dr. Samji to benefit many people on this forum.
WOW! What a journey & what a great outcome to your perseverance in working for what you feel is best in this situation. Kudos to your doctor for giving you the time to have an intelligent discussion about ES & to admit his inexperience with it. He sounds like a truly good surgeon & person. There are doctors who aren’t willing to admit their ignorance & plunge forward to the detriment of their patients.
I’m also hoping you don’t have to wait too long to see Mr. Axon.
How are you feeling after the operation?
Sending healing wishes to you.