Sounds like you have been through a horrible journey… but hopefully will be coming out of it soon. You sound like a really strong person, and glad that you can find something positive after surgery! Is the pain just one side, or were you having trouble with both sides? Sometimes after surgery the other side can ramp up, unfortunately, so maybe that’s what’s happened?
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thanks Jules
I have bilateral but knew the right was more problematic. On imaging the right jugular is compressed by styloid, and mid right ICA is tortuous. I even knew the right side would be the riskier to operate on but now that is done, when I am recovered enough and feel I can risk it all again will get the left done.
yes I read that the other side can ramp up, but still dealing with the OTT right side pain and symptoms and the aftermath of vascular accident so will just have to ride it out for the time being.
Della,
As you have read, recovery from surgery requires great patience. There is a point late in the first week/early in the second week post op when the swelling from surgery reaches it’s peak & everything seems worse for a day or two. After that the symptoms begin to calm down & the real healing begins. It will be a couple of months before you begin to have the true picture of how successful your surgery was. For the time being keep doing what you’re doing - head elevated when at rest, pain meds as needed, ice the inicision, etc., whatever helps you feel better. Glad you had a follow-up appt w/ your gp. Hope he was helpful in evaluating your current symptoms.
Great story about your face! I also had a tongue issue post op on my right side. Glossopharyngeal nerve was wrapped around my right styloid & needed to be partially unwrapped so the styloid could be shortened. Post op the right side of my tongue was paralyzed (not numb) & curved hard to the right when I stuck it out. It was an interesting experience. I had a hard time talking & eating for several months. Going forward, it took about 9 months before it healed enough I could speak fairly normally. Words w/ double ts in them like “little” were nearly impossible for me to pronounce. I use that word a lot & resorted to saying “small” instead…
I hope your face & tongue fully recover as time passes. I think there’s a good chance they will.
h a haa am laughing, yes I learnt to change my language to accommodate my changed mouth back in 2012. Now it’s so funny, am not too worried about that as the surgeon said that my tongue problems are due to the hyperglossal nerve had to be retracted during the surgery… he did mention “shearing” another nerve but didn’t get the name of it, will probably be in his report. He reckons that should improve in 4-6 weeks.
2 positives:
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I have a lot less vertigo than pre-surgery… really, although I feel like I have been hit by a bus, and the pain etc is full on, I can notice a drastic reduction in the vertigo! It’s not perfect but I still have a lot of swelling as it is early days.
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I mightn’t be able to pronounce the lyrics, but I can sing beautifully still, as in my range and ability seems the same. yay
Hey, now there’s something I hadn’t hoped for! A beautiful singing voice with the healing of my sloppy speech! Wish that had been part of my get well package!
I like to joke that when I get to heaven that’s the first thing I’ll ask God for - a lovely singing voice! I love to sing but no one would enjoy listening!! 
Also, that’s great news about the vertigo. There have been other people on this forum who have had the same positive result w/ vertigo after ES surgery.
I reckon everyone can sing… sometimes it’s a matter of finding the right kind of music for the individual
In my case, it would have to be loud enough to drown out my voice! Nah…my singing isn’t that bad just not noteworthy.
You’ve never heard me sing- believe me there is NO song / music which would suit my voice!!!
I used to sing in a band and alot at home with my kids. ES put an painfull end to that. Singing is and was a maintrigger for my symptoms 
OUch Benyon! that is sad. I can’t manage bands and stuff now but I still sing at home, when I am struggling. I fronted 4 busy working bands in my day and also had a lovely solo career.
I am, I guess, trying to find some positives. Am struggling so hard with the new setback, but being able to hold a tune and having a somewhat evened out face, and less vertigo have to be my positives for now.
Jules, black metal maybe? ha haa sorry joking.
Jules, you & I can create our own “music”! It may sound like cats howling in the night, but in this culture, even that might be a popular sound! (Alternatively, we can just call it a joyful noise unto the Lord)
Benyon & Della, MusicGeek had the same problem with singing as she is also a musician. I think her vocal ability is gradually returning since her first ES surgery though. There is hope for you both to have the same experience! Your second surgeries plus time (maybe up to a year post op) should make a huge difference.
hey all so 13 days post op
a lot of the swelling has gone down. Still got considerable swelling inside wound site which I can feel messing with my carotids but guessing that that will take time to subside and for the carotids, after being pulled all over the place for years, to find a normal space to be.
have cut down painkillers to a minimal amount and am being super careful to not move my head too much.
I really struggled with top of C spine pain now for years, am sure the ehlers danlos has created some instability around about the C3/4 mark and this has exasperated things for the ES too. I don’t know what position I was in for the surgery but my C spine has been miserable since. It keeps locking up and so so painful. Just icepacking and trying to be patient with it.
Truly happy the vertigo has subsided.
I can’t express enough, after years and years of crying through apts that I am drowning in permanent vertigo, that I even nearly threw the towel in a few times, that I couldn’t stand the damn vertigo, that now, post 1st surgery, it has eased off for the first time in years, I am simply amazed.
All the visual problems that have gone with the vertigo, like a laggy vision, have eased a little too and I guess it will take time for my system, which kinda rewired wrong years ago… to retrain itself into some normalcy. I hope to access some rehab in the near future.
Still aware of small stroke from surgery. It’s very familiar and thankfully not as extreme in the damage as from 2012. I guess, in the end, I have traded, unbeknownst to me prior to surgery:
- brain/processing set back about 2.5 years
- left weakness of lower face and arm/hand
- numbness and unco-ordination of above
for
- vertigo reprieve
- a more symetrical face
- a soon to be ES symptom free right side
A friend asked me the other day if I felt the trade off was worth it? I think, I can honestly say, yes…
thanks all, will keep y’all posted
Della, FNQ, Oz
So happy to hear this good report. With time, you will hopefully notice even more benefits from the ES surgery!!
I got the first copy of surgery report…pretty confused as to what has actually been done.
I had elongated styloids and ossified ligaments bilaterally.
in the report it reads like only 2.5cm of the ligament has been taken out.
anyone able to tell me what I am missing? Or am I reading this right?
It looks like you’re reading it right, to me, but I would contact your surgeon’s office to ask for clarification of what was actually done & then ask questions about what might not have been done at that time.
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There does seem to be quite a bit of confusion about names for styloid processes, ligaments etc.- from the research I’ve done, some doctors seem to think that the SP is cartilage and not bone, and call it ossified when it’s elongated, when actually it is a bony process anyway. I’ve never heard mention of a stylohyoid tendon before, it’s always called a ligament… I think that it would be good to get clarity on what actually has been removed and if they’ve actually removed any styloid process at all, or just the calcified ligament?
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thanks, I assumed that, following surgery, the surgeon would write a thorough report to the referring doctor, as such nothing has arrived yet. I have written to request a further consult with the surgeon as, I didn’t get a proper one, pre surgery, didn’t get to ask my 6 important questions re vascular ES bilateral, as the consult was mostly spent on the surgeon trying to tell me there wasn’t such a thing. TBH, it’s been handled fairly poorly and I am left in pretty bad shape and with no clear concise communication again.
thanks will try to get to the bottom of this
Della, FNQ Oz
heya All
still no word from surgeons office, I have a new gp and he has written to request the info. ridiculous to have to ask for post surgery letter but that is where it is at.
hoping to get clarity on actual length of styloid process pre surgery, how much of actual styloid and ligament was taken out during surgery, timing and risks for left side surgery etc.
not too big an ask I would have thought. Will keep you posted.
5 weeks post op:
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wound is healing well, local drs office I went to to get stitches knots cut out as per surgeons instructions, they tried to pull out my dissolvable stitches!!! it got all puckered and inflamed and I have been trying to massage bio-oil into it and stretch it out again.
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swelling is still going down. been trying to massage the lymph gunk out of my neck, can feel swelling under my chin still but this too should pass
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still loving that most of the “vertigo” has vanished. It wasn’t vertigo as normal. It was like living on a travellator, one that moves forwards, backwards, sideways, tilting up and down at all angles…has made me “drunk walk” now for 4 years. This is an amazing bonus - I knew that the cause of this disturbing symptom was the carotid or vessel compression and to have 70% improvement on this is a total blessing.
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right sided tinnitus is minimal and only coming in sporadically now and then, this too I have lived with for over 4 years, and since April this year, when I hurt something in my neck with a loud crack, has been constant, to the point of actually having some hearing loss in the right ear from it. Yay
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it’s been a huge journey mentally/emotionally, I have had a rotten time with unsupportive gp and no clear communication from surgeon and it’s taken its toll but I am determined to get there, get clarity and simply move on with the plan to get left side done and get on with my life
thanks all x