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Eagle Syndrome - Online Support Group

Surgery sooner than I expected (Cardiff, South Wales, UK)


#1

Hi there
I thought that I had a few months to wait for my first surgery, but, because of a cancellation, I am being admitted on Wednesday, to have the op on Thursday this week (2 days time). I’m really pleased that it’s happening sooner rather than later, but I am so unprepared! I know there is a lot of information here, but I haven’t got much time to search. Could anyone let me know what i need to get or do before I go in? What questions should I be asking? What should I take in with me? What do I need to prepare for when I get home? etc etc. I have been told that I will be in for three nights. One, before and two after the op.
Also, how long is the usual gap between having the two sides operated on?
Thanks in advance.


#2

Great news that you’re going in sooner- less time to worry!
Seamom kindly did a ‘shopping list’ of what to get in, here’s a link: Surgery shopping list
That’s an extra couple of nights to what the norm is, but good that they’ll be taking care of you! Not sure if you’ll be having a drain in to help keep swelling down? That’s something you could ask about; if not then alot of people need ice packs once home to reduce it, but obviously not going to be possible in hospital. In the US they seem to often prescribe steroids for swelling, but not in the UK. Keep on top of pain medications you’re offered- if you try to be brave it’ll be harder to get the pain under control if they wear off. Not everyone needs too much though, I was lucky & only needed paracetemol after the first night, it varies.
Eating could well be uncomfortable, so we suggest most people get soft foods ready at home, smoothie ingredients etc., hopefully at hospital they’ll have yoghurts, icecream etc you can eat. Otherwise you could get some stuff like that, pots of custard etc. that family could bring in for you?
Obviously stuff prepared for the boredom of being in for that time, whatever will distract you!!
Are you having inta-oral, or external surgery? I would make sure that the surgeon can remove as much of the styloid as possible, & if there’s any calcified ligaments that they’re removed too. Also double check that they’ll smooth off the end of the styloid where it’s cut, not snapped off, which has been done!
Here’s a link to the info in the Newbies Guide to save you searching:
ES Information- Treatment: Surgery
& some info a bout what to expect:
Bilateral Eagle Syndrome Extraoral Surgery #1 of 2: My day 1 experience/post-op recovery/tips
Hope this helps!
Also most doctors leave it 3-6 months before doing the 2nd side to let things settle. I ended up with a year apart, with the NHS waiting lists!
I hope that all goes well for your surgery, & I’ll be praying for you :hugs:


#3

Thank you so much Jules. That’s really helpful and thoughtful! I’ll have a look through the links now. I’m having the extra-oral approach, and I will definitely make sure he takes off as much as he can etc. He said that I will have a drain in place. Mr Cellan Thomas is my surgeon and I’m having the operation done in the University Hospital of Wales, Heath, Cardiff. He is a maxillo-facial surgeon who is on the head and neck cancer team. I’m not sure how many of these operations he has done, but I have some friends who have worked with him and speak very highly of him. I’ll let you know how I get on and hopefully will have another name to add to the list of doctors.
I’m so grateful for the help and support of this wonderful online support group.
Thank you again Jules for your quick reply! And for your prayers!
Pumpkin


#4

Good luck with your surgery Pumpkin. By the looks of it the consultant I’m under is going to discuss my case with the head and neck cancer team this Wednesday (It must be the team you are under because I’ve seen his name on the list). I’ll be thinking of you on Thursday. Take care.


#5

Thank you cjeagle!
Hope you don’t have to wait too long for your surgery. I’ll let you know how I get on.
Take care!


#6

Pumpkin- you’re very welcome, & hopefully all will go well! It would be great to have another doctor to add to the list…
Cjeagle- hope that you hear something soon as well!


#7

Hi Jules et al
Sorry for the long delay in posting an update!
The last few months have been absolutely incredible! After 5 frustrating years of headaches and passing out and much more, getting a diagnosis in January was amazing. It has been a bit of a whirlwind ever since and apart from one hiccup, which delayed things a few months, everything has gone so well since. (hope I’m not speaking too soon!). Anyway, I was eventually seen by a highly respected Maxillo-facial surgeon, who specialises in head and neck cancer surgery. I was told that his cancer patients had priority (which they should be) and the operation would be in a few months. Just 10 days later, I had a call from his secretary and was in hospital 2 days after that and had the surgery the next day. I had complete confidence in him, even though I didn’t know if he had done the operation before, because of his reputation and because I knew quite a few people who had worked with him and said he was amazing. I actually live 5 minutes drive from the hospital too, so have avoided the dreaded travelling and all the complications that come with it. Having such short notice, for me, was perfect, as I didn’t have any time to think or worry about it (this was my first time for surgery under general anaesthetic). I had such a peace and I wasn’t nervous at all. It all went like clockwork. The care I had was second to none. When I woke in recovery, I felt, what I can only describe as “fainting” in reverse. I suppose it’s the drugs they give you, but I felt quite euphoric. I certainly felt elated knowing that something that was making me so unwell had been taken away. My surgeon was there straight away and told me that the operation went well. He also explained that he had to remove an enlarged lymph node from the area and sent it for examination. He said there was nothing to worry about and that it was probably reacting to the things that were invading the space. He also said that the SP was much bigger than it showed on the scan. He was able to take the calcified ligament and the SP right back to the temporal bone. Back on the ward I was well looked after and was well on my way to recovery. I had a drain in, which did make things a little awkward i.e. having to use one hand to wash etc. I stayed in for 2 days, as they wanted more to drain away before I went home. I must say, having it removed was unpleasant, as the nurses had warned, but I lay on the bed with earphones in, listening to music played by my daughter, which was a good distraction. My scar was very neat and followed the natural folds in my neck. (or hidden by the flab according to my husband) I had dissolveable stitches and lots of glue, but a few ordinary stitches to hold the drain in place. Unfortunately, some hair at the back of my neck, was thick with dry blood and was caught up in the stitches, making it difficult for the nurse to take them out. My surgeon came to see me 3 or 4 times more before I was discharged. I took everyone’s advice and accepted all pain relief, so it was hard to know if the surgery was a success at first, but after about a week, I stopped them completely and didn’t need them. I was told to carry on taking my normal Amitriptyline, which I did, but apart from a few niggles, the headaches and pain on the left side of my head has gone and I’ve been able to do so many things again, that I haven’t done for such a long time. All along I have felt that the left side was causing the most pain and that the right side was causing me to pass out when I turn my head, so I’m half way there. I had my 6 weeks follow up appointment 2 weeks ago and all is well and I’m on the list for the right side to be done. As before, he told me that it might be a few months, but he knows that I am able to go in at short notice if a slot becomes available. I’m feeling so much better every day and the scar is healing nicely. Since the last appointment, I have been massaging Bio Oil into the scar area twice a day and will do for 3 months. It has made it feel less tight and should aid the healing process. I took on board all the tips I was given from here, which were great. I wasn’t able to get a wedge pillow, but I did get a V shaped pillow and used lots of pillows to prop myself up, which was great. I spent the first couple of nights at home in a single bed to avoid being accidentally hit by a flaying arm. I have only been able to eat softish food for a long while now, dew to my TMD, but i didn’t need anything pureed as my throat was perfectly fine. I didn’t need the ice packs either. Having the drain in for an extra day and seeping propped up for a while did the trick. My left earlobe and jaw area was numb for about 4-5 weeks, but feeling has returned almost completely now. As regards “First Bite Syndrome”, I have had it anyway for years, certainly longer than when my headache problems started and didn’t know what it was called until recently. After the operation, it was slightly more intense for a while, but even that seems to be gone (at this point in time anyway). Swallowing and gagging reflex is a lot better. I still have the tinnitus in my left ear. I seem to be more aware of the SP on the other side since the op. (My mind playing tricks? I don’t know) After a very tough five years, I feel so incredibly lucky to have the surgeon and the facilities, less than two miles from where I live and on the NHS! I hope this is of some help to anyone out there. I am so grateful for this support group, without which, I would still be in the dark. I am waiting with great anticipation for my right side to be operated on and I can stop worrying about passing out and get my life back. Sorry for the long post, although, I hope I haven’t missed anything out. I will keep you posted and wish everyone on here all the best in their journey to good health. There is light at the end of the tunnel. Don’t give up!
Ps: I haven’t named my surgeon because his priority are his cancer patients and he doesn’t do any private work. Saying that, if anyone in the South Wales area is referred to him, you will be in excellent hands. Pps: After the op, I did ask him how many surgeries he had done. He smiled and told me that he had done 4 in the last 20 years, but he had done hundreds of neck disections. Well he has done 5 now!


#8

Thank you for your prayers Jules!


#9

A beautiful post!!!


#10

It’s so wonderful to hear your good news, Pumpkin! Here’s hoping & praying that the second side surgery will go as well with even quicker healing.

BTW - It’s not uncommon in bilateral cases for the remaining styloid to feel more symptomatic after the first one is removed. It may be because it’s becomes our sole focus once the first is removed.

:two_hearts:


#11

Great news! Glad that all’s gone so well, & hope that at some point you’ll be able to get side no.2 done! It’s so helpful when members gives updates after surgery, it’s good to get positive stories, so thank you for sharing!


#12

Great post. I’m so glad this has gone well for you and your post gives me hope that there is a light at the end of the tunnel. Thanks so much for posting.


#13

OMG Pumpkin…so awesome to read success stories such as yours. I didn’t find your post to be too long at all. It continues to amaze me when I read about all of these crazy symptoms and the number of people that suffer through them. Hard to believe so many of us go through years of medical/dental visit after visit and being told time and time again there is nothing wrong with us. It just makes me wonder how many of them we have lost for feeling there is no hope.
If you have a minute or two, would love another update - good, bad or ugly!


#14

Hi kiZe6159
Thanks so much for your comments. This support group has been a life line to me and I’m just so glad that we are not alone! I’m 3 months post op now and even though I’ve still got a way to go til the other side, that is causing me to pass out, is dealt with, I am feeling fantastic. I haven’t been able to laugh, get excited, look up at the sky, think straight, oh and so much more for 5 years and now I can, I just want to shout it from the roof tops! My heart goes out to others going through the same thing and especially those who’s surgeries have left them with a lot to deal with afterwards. My GP has been there for me from the beginning and is quite amazed at the difference. She, as most others in the medical profession, has never heard of Eagle’s Syndrome and has asked if I would be willing to take part in a case review. She is really keen to do something to stop others going through the same as me and so am I!!! :smile:


#15

HOORAY FOR YOUR GP!! I wish all medical doctors who have contact w/ ES patients, especially post op w/ positive changes, would stand up & take notice. So many continue to show no interest even after the great improvements that can come from surgery.
So glad to hear of your great improvement. julianeagle also had “mental fogginess” which has lifted since her surgery. This must be a huge relief for you! :sunflower::sunflower:


#16

Wow Pumpkin…praises to you and your your GP! Funny you should mention the shouting from the rooftops because that’s exactly what I wanted to do after getting diagnosed! Ya’ll hear that…I’M NOT CRAZY!!! But I thought I would reserve that until I actually visit with the surgeon and see what’s coming (and what’s going)!
I’m so happy that you are getting your life back and I can’t even wait…I like you, have many, many symptoms! If I can kick half of them to the curb I will be elated!


#17

That’s really great news, & I hope that once you get the second side done, you’ll be shouting even louder from the rooftops!


#18

We live in south wales too my husband will be having his surgery in the Royal Glamorgan Hospital on the 30th of October. Eagle syndrome has taken over out whole lives as a family.


#19

Who from the Royal Glam is going to carry out his surgery?


#20

Just to say that there’s lots of info about what to ask a surgeon before surgery, to check that they’re going to do the best for you; it’s worth reading through before your appt. to make sure that your doctor has the experience & info needed. I don’t want to scare you, but not all doctors are aware of how important it is to remove as much of the styloid process as possible up to the skull base, & that the pieces should be removed, not left in (& that has happened, unfortunately!). If your husband’s ligaments are calcified, then it’s important that they are removed too. I’m sure you are all wanting to get this op done as quickly as possible, but there can be risks with it, so it’s worth taking the time to ensure that it’s done right the first time.