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Eagle Syndrome - Online Support Group

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


#21

Thank you Jules my husbands Doctor didnt actually turn up the the pre op consultation and another registrar talked my husband through although we still do have alot of Questions!
i know his Doctor specializes in throat cancers and he has been a pediatric ENT but there is nothing to say he has actually had a patient with Eagle syndrome and didnt get the chance to ask him


#22

Me again.
Second surgery on the right styloid is scheduled for tomorrow and I’m waiting to hear from the ward what time to go in later today. The six months since the first surgery have been fantastic. There have been a few blips, but I know they were to be expected. I can’t wait to see the back of the remaining styloid and stop feeling as if I’m going to pass out all the time ( which is what does happen when my head is in certain positions etc.) I would appreciate your prayers and I will keep you updated. Thank you all! :blush:


#23

Will definitely be praying for you, hope that all goes well again! Let us know how you get on when you can… :pray: :hugs:


#24

I second all of Jules’ sentiments. Do hope for the best for you & will pray tonight as you’re many hours ahead of us here in the US.
:slightly_smiling_face:


#25

Thanks both. Unfortunately, my op was cancelled at the very last minute. The poor person before me suddenly became very unwell in theatre, so there was no anaesthetist. It’s been a horrible experience and I’m exhausted, but these things happen and hopefully I won’t have to wait too long for another slot.
Thanks again! :slightly_smiling_face:


#26

That’s unfortunate, I had my second op cancelled too. Hope it isn’t too long to wait…


#27

Yes! I also hope there’s another opening soon! How disappointing to be so close to surgery then to have “the rug pulled out from under you!” I always feel these things happen for a reason, though.


#28

Hi Kat, Some members are meeting up in Rhigos on 30th January for lunch do you or your husband want to join us?


#29

Long update alert!

I’m pleased to say that surgery went ahead to remove my right styloid and calcified ligament in December and recovery is going well!

I had my left styloid removed in May, so there was a 7 month gap between the two surgeries, which I’d say is about right or at least it was for me. The symptoms were different for both sides, so I expected the surgery and the recovery to be different too and they mainly were. The left side was responsible for my constant headaches etc., while the right side was responsible for constant nausea, feeling faint, passing out etc. This time I only had one night’s stay in hospital as opposed to three nights last time, which was mainly because more fluid had drained away, so I was able to come home once the drain had been removed. I had found washing etc. difficult last time, because of having to carry the drain around, so I made myself an adjustable shoulder bag to carry it around in. It made such a difference. I got the dimensions on line and would recommend using one, that’s if you do have a drain. I felt completely at peace again this time, just as I was with the first surgery. It’s funny; I didn’t have that feeling in October, when surgery was cancelled. It definitely happened for a reason! I wasn’t really happy with the way the anaesthetist was going to intubate, which was completely different to the first surgery. This time, the anaesthetist explained everything and she was going to do things exactly like the first time. I was so relieves and there was something about her that made me feel very calm. She was so lovely. A good friend of mine from church had told me about a friend of hers who is an anaesthetist and uses her annual leave to be part of the medical teams on the Mercy Ships. Well, it turned out that this lovely lady was indeed her, I couldn’t believe it. I feel so fortunate to have got this far after the nightmare of the last 6 years. There is light at the end of the tunnel and it’s shining every so brightly!

Here’s a summary of how recovery has gone. Hope it’s of interest or a help to others going through it all at the moment.

Day 1 - Surgery day. All went well. Styloid was very long and thick and much longer than it looked on the scan (as was the left side). Scar very neat in natural fold in skin, with dissolvable stitches and glue. Area numb. Given paracetamol and ibuprofen for pain relief. Felt really good.

Day 2 – All checks good. Drain removed. Not the most pleasant of sensations, but not painful and didn’t take long. (Last time, the drain was very long and took quite a long time to remove). Discharged and home by the evening. Felt great, but had to rein myself in as I knew this was due to the anaesthetics and meds etc.

Slept on my own for a week, propped up with a V pillow for first couple of weeks. I found sleeping difficult this time, as my left side was still recovering from previous surgery and had to stay lying on my back, which I found quite uncomfortable and made my back ache. (Have since started lying on my left side and everything ok)

First week, pain under control, feeling good, taking it easy with just a couple of walks around the block.

Week 2 – Pain behind ear quite bad, making wearing glasses difficult, but got better after a week or so.

Day 10 – I had been doing really well, but had a couple of days when I felt dreadful. I was extremely nauseous, burning hot and felt really faint. I thought I may have had an infection, because my arms and my legs were burning, but my temperature was normal the whole time. I hadn’t experienced this before and felt very low and weepy for a few days, but then it passed.

Week 3 - Stopped pain killers. Very tired, but gradually doing more (especially over Christmas)

Week 5 – All going well until a couple of days of severe headaches. This was horrible, as I thought I had seen the back of them after the left styloidectomy. But, I remembered that the same thing had happened after the last surgery and when I checked my diary, it was at exactly 5 weeks post op. Very odd.

Week 6 – Follow up appointment with my surgeon. Very happy with both sides and no need to see him again unless I have a problem. All glue gone by now. The rear of my scar was a little sore and I could feel an end of a stitch sticking out. He explained how the stitches are done and said that some stitches can take up to a year to dissolve.

All glue dissolved.

Started massaging the area with bio oil (as I did the last time and well worth doing)

Week 7 – Feeling the best I’ve felt in 6 years and can’t quite believe it.

I’ve been taking Amitriptyline for the last 5 years and hope to start to reduce them gradually soon. I am very wary to do it too soon, as I know that nerve recovery is slow.

SYMPTOMS -

Relieved following left styloidectomy

Constant headaches/shooting pains

Nervy feeling/swirling shivers/tingling all over head

Stabbing pains in left ear

Pain along jaw line

Clicking underneath left jaw line

Confusion

Can’t think straight

Poor short term/working memory

Relieved soon after right styloidectomy -

Passing out when turning head etc

Chronic Pre-syncope

Light-headedness/dizziness

Constant nausea

Stabbing pains in right ear

Throat –pain/aching/choking

Better, but not gone

Blood pressure regulatory problems

Orthostatic Hypotension

Pulsatile tinnitus in right ear after standing or changing position

Throbbing and pain in back of head after standing or changing position

TMJ

Unable to open mouth fully

Difficulty swallowing

Fullness in ears

Remain the same

Tinnitus left ear only

First Bite Syndrome (Which I’ve had for 6 years or more)

Croaky voice

Remain from surgery

Numbness and tingling

Can touch one part of my neck and I feel it about 2/3 cm away.

The last year has been incredible and I am forever grateful to the amazing team of people who have been instrumental in giving me my life back! That includes people on this wonderful support group, especially Jules & Isaiah_40_31, without whom, I would still be totally in the dark and continuing on a downward spiral. My faith has kept me going and now my faith in the medical profession and my fellow man has been restored. (Sorry, feeling very emotional as I write!)

Thank you all! :grinning:
(Please excuse if this doesn’t make sense. Written quickly, without checking)


#30

Pumpkin,

Congratulations - I am so very happy for you! I hope I am right behind you:)

Wondering - that nervy/tingling feeling - did it go away right away or take a few weeks. I would really like that one to go away. . . .

Again - CONGRATS!


#31

So glad that you’ve had both sides done successfully! It’s so helpful when people come back with post surgery updates & info about healing times…I hope that you keep on finding improvements in the symptoms you have left, I’m sure you will, & can come off the amitriptyline too. Really pleased for you! :grin:


#32

I had a weird nerve feeling around my ears after each surgery, I’d get this sort of tingly rush up the outsides at times, especially if I had a shock or was stressed, really irritating, but it’s virtually gone now. I hope yours goes too!


#33

Hi sjlash
Ah, I can happily say that I have had no recurrence of the strange nervy feeling since my first surgery and that’s from day one! It was something that was so hard to describe to doctors and was always there. It was really horrible, but its amazing now it’s gone.
Are your symptoms anthything like mine? Are you having surgery soon? Wishing you the very best!!!


#34

These styloids cause so many weird symptoms don’t they! Thanks to reading as much as I could on here I was prepared for the numbness and stuff. Small price to pay! :blush:.


#35

Thank you for the thorough report, Pumpkin! Though setbacks in recovery are no fun, that seems to be the way it goes w/ nerve healing & ES healing in general. You’d think that as you recover, there would be less & less pain but those darn nerves just have to let you know they’re still there & still annoyed!

It’s fantastic to hear that you’ve come so far since your second surgery. You will likely continue to notice changes (mostly good but maybe still an occasional step backwards) for a year or more post op.

For others currently healing from surgery: Since we are each built a little differently, symptoms one person recovers from quickly might be a slower recovery for someone else & vice versa. The happy news is that most often, with time & patience, there is nearly full recovery. I’ve found through the years I’ve been on this forum that we all seem to be left w/ a few residual post op ES “reminders”. Perhaps this a good thing because it keeps us mindful of how far we’ve come & how AWESOME it is to be very functional again.


#36

Great reminder Isaiah. I am constantly trying to work on my “to compare is to despair” tendencies and this is definitely a time I could slip into “but they didn’t have xyz happen”. So far staying in my own lane and waiting for my own body to do its thing. :+1::heart:


#37

I like that saying - “To compare is to despair”. I need to adopt that as one of my mottos so I don’t compare & despair!! I’m the worst about that for myself!


#38

Wise words both! How is your recovery going SewMomma? Xx


#39

I’m happy with how much energy I have today! But my tongue is taking its sweet time. It’s slightly deviated to the right, puffy on the right and I can’t clear food from that side to save my life. I’m totally numb all along my right jaw line above the incision but that doesn’t bother me as much as my tongue issue. It’s not painful though so…yay? :wink: Thanks for asking - day 18 :clap::sun_with_face:


#40

My right jaw line and earlobe are still numb, but my left has just about come back to life, so I know it will too. My tongue and throat have been fine. Really hope your swelling goes down soon. Must be very uncomfortable and annoying! Hope your recovery continues well! Take care :blush: