I can’t see any obvious calcification as @Isaiah_40_31 said too, but not sure how well they normally show up…
2 Likes
Help….
My canceled appointment on the 13th Nov has now been taken from 23rd December to tomorrow 20th December.
Im a little unprepared and just really want to ask you all what I should be asking g the surgeon.
This is a follow up appointment for my CT scan with contrast I had a month or so ago so im hoping he will have things he needs to tell me about what could be going on. But obviously id like to get these things out ASAP so what should zi be asking him?
Any help would be fantastic.
Matt
Good news, but understandably a surprise!
So there are some questions in the Newbies Guide Section about suggestions of what to ask a doctor:
- How many ES surgeries have they done and what was the success rate?
- Whether they’re going to operate externally, or intraoral- through the mouth. Whilst some members have had successful surgeries with intraoral, external is better for seeing all the structures, to be able to remove more of the styloids, & also there’s less chance of infection.
- You need to ask how much of the styloid he’ll remove- as much as possible is best- & anything left needs to be smoothed off. The piece needs to be removed too- some doctors have snapped it off & left it in! If the styloid is only shortened a bit it can still cause symptoms.
- If your stylohyoid ligaments are calcified, then any calcified section needs to be removed too.
- There’s usually swelling after surgery; you could ask if a drain’s put in to reduce swelling, or if steroids are prescribed. It’s not essential, but can help with recovery a bit.
- Will it be a day case surgery or will you need to stay in?
- Obviously ask the risks- we know from experience on here that temporary damage to the facial nerve is quite common, and also the hypoglossal nerve and the accessory nerve. These usually recovery very quickly but in some cases members have needed physiotherapy. There is also the risk of catching a blood vessel or having a stroke, but these are very rare.
- Ask if the surgeon monitors the nerves- this should be done to see if there’s stress on the nerves to avoid damage as mentioned above.
- What painkillers will be prescribed afterwards.
- Ask about recovery- most doctors either down play it or are genuinely unaware of how long the recovery can take!
- We have heard that occasionally doctors use surgical clips which are left in, it’s been suggested that these could interfere with chiropractic adjustments if needed post-surgery, so something to consider, and also we have now seen members who’ve been left in pain from the clips and needed further surgery to remove them, so do ask if they might be used.
I would also ask about what has been pointed out on your scans, like the IJV compression on your right side, contact with your left styloid & carotid artery; obviously nobody on here are doctors, so it’s just what members have learnt themselves, so you might need to word it carefully!
I also would ask about things to help your pressure and dizziness, so maybe medication and if there’s any vestibular rehab you could be referred for?
Hope that your appointment goes well, and let us know when you can
1 Like
Wow……honestly i had no idea about any of that tbh, you are amazing because that’s a lot and a huge effort to write, so thank you very much.
It’s 4.20am here and another night of not being able to sleep do to my left ear feeling fat, swollen kinda preasure and sligjt ear popping like in a plane if that makes sense.
I will definitely be asking these questions today and as I’ve said im very luck my specialist is a lovely guy so I hope he is ok with me asking and not be offended in anyway. This is a huge deal and one im very anxious about because I dont want it to end up worse than what im currently experiencing. Those clamps things dont sound very good either? Also im not sure if mine are calcified so ill be asking that as well.
THANK YOU so much for all your efforts with this for me, Denese and I are extremely grateful
Kind regards
Matt.
2 Likes
Well im back home now after a very long wait in hospital to follow up today on my CT scans done in October.
Our poor health system and amazing nurses and Doctors are over worked and exhausted but after 5 hours we left with mixed feelings.
My specialist is amazing and very good with me, he is a lovely man who generally cares about his patients. After viewing my images he said to me he feels that the styloids are not causing my balance problems. This was hard to hear as I’ve never had any balance problems before falling ill almost 7 years ago with this.
He feels that the surgery may help some of my symptoms but he feels that the balance problems im experiencing is not caused by the 5.5cm styloid in my neck. He wants me to go and get a second neurologist opinion with CT scan.
Im really list now, I did try to show the images I’ve got here that have been done by TML but both doctors today weren’t realky to interested in them. They have their own way to explore the images and feel confident in that.
So….they have told me a waiting time of over a year for a public neurologist through the hospital.
6 to 12 months surgery wait should I want to go thst way, and recommend going external surgery not through the throat.
If I want to go private ( with him) doing it, he could get me in late February at a cost of around $30,000k New Zealand dollars.
I didn’t really get to many questions in as I saw the first specialist not my surgeon . He came in towards the end but both Doctors were very good.
I asked how many Eagles Syndrome surgery he does and its 2 to 3 a year on average. He is a neck specialist for cancer etc and im confident he knows his stuff. Im just frustrated, im so over this and so unsure now of what to do next.
Everything will shut down here for 8 weeks over Christmas, going private for a neurologist in NZ is still a waiting list and expensive. Im obviously not working and my wife is not on great pay. This has slowly taken our spirit and we are feeling defeated. This will be 8 years next month and we have had to sell our house to survive thus far.
Anyway, im just down about it, about what I’ve got ahead, and to what I might have to endure to wait for surgery, or even if that will even do anything.
Thanks for listening.
I’m sorry that he didn’t feel he could help with your balance issues; it’s tricky as no surgeon will say that they feel surgery for ES will fix all your issues, so don’t let that put you off! Obviously we don’t know what is causing yours, but I speak from personal experience & the constant off-balance feeling & dizzy spells I had disappeared almost straight away after surgery, & I believe these were caused by IJV compression.
It sounds like your quality of life is so miserable that to wait a year for a neuro appointment, & then to possibly still have no answers, to maybe wait even longer for more testing & then follow-up, & then to go on a waiting list for surgery isn’t realistic!
Is he willing to put you on the waiting list for surgery without seeing the neuro? If it was me I would push for that, see what resolves with surgery & then if symptoms remain I’d cross that bridge when I came to it, if that’s possible? If he’s a head & neck cancer surgeon then I would imagine he’s competent with the surgery as they often have to remove the styloids to access tissues in the neck.
Sending you both hugs, seems like healthcare in most countries is a major battle now, you’re not alone, not that it’s much consolation! 
2 Likes
I agree with & second everything @Jules has said. She’s given you very good advice, Matt. I’m so sorry you didn’t receive stronger support regarding the help surgery could provide, but I do understand that doctors can’t promise anything since every patient responds to a given surgery a bit differently. For what it’s worth, those of us who’ve had ES surgeries each took a chance that the outcomes would be what we hoped for & in many cases they were so the risk was worthwhile.
2 Likes
Thank you its now 10.30am here Friday. Yesterday was hard, heartbreaking to hear that because what else could it be?
I have already done a MRI on my brain right at the very beginning and was given the all clear. After getting some ( very little) sleep 
I’ve decided to book another neurologist (privately) just to see and get a second opinion.
YES he is will to do the surgery and I’ve signed off on that before leaving hospital last night, so im on the waiting list and that can be up to 6 months through the hospital.
This is what Denese and I are thinking.
1# get on waiting list for surgery public
2# get into private neurologist second opinion
3# see what results come back from #2
4# keep buying lotto and if we win 30k got private ASAP.
Im trying to stay positive and have some kind of humor but its hard right now.
My specialist is a lovely man and im extremely grateful for his honesty, its just heartbreaking when you think you finally have some answers but its not really.
Thank you ALL very very much for your kind support Denese and I are a little exhausted right now but sincerely appreciate you all.
Kind regards Matt and Denese
2 Likes
Thank you.
It was just a lot to take on board because im thi king going into this YAY FINALLY! and oh course that wasn’t the outcome I wanted to hear.
They went through a list of stuff that can happen from surgery which was hard to hear.
#1 first bite syndrome….OK
#2 things resulting from the nerve being stretched or hit, but having adhd it kinda all went over my head tbh.
Anyway, I just have to take deep breaths and regroup. They are only doing what they have to do so we know all the risks.
Thanks again.
2 Likes
Your plan sounds pretty good & sensible, & I’m glad that you are on the waiting list for surgery at least… Maybe put lottery tickets down on your Christmas list for family & friends to get you Good to keep your humour if you can, but it’s not easy…
There are risks with the surgery, but hopefully these are minimised with an experienced surgeon. The first bite can be painful & annoying but not everyone gets it & it does fade with time. The nerves which can get affected are the facial nerve, the hypoglossal nerve, glossopharyngeal nerve or the spinal accessory nerve to the shoulder- again the risks can be lessened by doing nerve monitoring, and although we have had quite a few members who have had post surgery issues with the facial nerve especially, these usually resolve with time & PT. Given how ill you’re feeling right now Matt, I think it’s probably worth taking those risks?
2 Likes
Yes im thinking its worth the risk myself. The specialist did mention the nerve monitor thing they put in your face once you are under, that was definitely something I wasn’t aware of.
One day at a time is all I can do right now.
Thanks again for your constant support and amazing knowledge of this horrible condition.
Kind regards
Matt
2 Likes
Hi Matt (@Denese),
how are you now? I am also in NZ and have Eagle syndrome / IJV compression.
1 Like