1st surgery...countdown and update

Hiya Eagles

have my first surgery tomorrow. Lots of muck around, was supposed to be last week, so scheduled for 1.30pm here in Victoria, Australia tomorrow.

frankly a bit terrified, really looking forward to coming out the other side.

haven’t really gotten to ask the surgeon much but I think I am having right side (which is the worst even though I am bilateral) and assume I am having external.

It’s been a truly stressful week, having flown from the other end of the country and the timing isn’t so great now but…fingers crossed it all goes well.

will check in with you all when I am able to let you know I made it :slight_smile:

Della, Oz

Best wishes, hope all goes well, thinking of you,
God Bless, Jules

Good luck Della!! You’re in our thoughts and prayers.

I am wishing you the best & that your healing is swift and the least stressful possible :sunny:

Wish you good luck for your surgery and recovery!

thanks all, discharged, back at a friends place to rest for couple of days.

wierd not being able to move my tongue much or properly on right, surgeon said he put some sort of local anaesthetic in that will make me a bit numb for a few days.

am drooling, can’t spit and swallow or speak properly but is ok. Sore, but that’s what pain killers are for.

it’s a little red now, the scar, assuming that’s normal. Not a huge incision but hey as long as it is out I am happy. Might try some ice on it for the swelling.

not too sure about sleeping, I always sleep on my right side but am not game, will just try prop myself up and sleep on my back and left for a few days.

saw the surgeon briefly this morning, he said it all went well.

yay, lots of sleeps and rest for me.

forgot to mention, for the first time in a long time, haven’t got the right sided tinnitus! I asked the surgeon this morning was that carotids or jugular and he said carotids so that’s a win. Had a little bit of whoosh whoosh last night from lying down but the screeching tinnitus which has been actually giving me hearing loss a bit on the right side, has dissapeared for now… pleased about that.

Congratulations…so thrilled for you :smile:

Glad you’ve seen an improvements already! I used to have pulsatile tinnitus, which was caused by pressure on the jugular veins- I think it took a few days to quieten because of swelling.
Take care of yourself,

hey thanks Jules and fellow Eagles

would you believe the tinnitus is back? and the whoosh whoosh, I think it is the swelling to be sure, it has only been a day and a half.

I just now managed to eat and swallow some soft cereal at almost 5am aussie time, been unable to manouvre my tongue to eat successfully since.

some of the numbness from the long lasting “caine” type anaesthetic has begun to wear off and is allowing more movement in mouth.

I have real concerns about the weakness in my mouth. As mine is bilateral vascular ES, I was stressed to the max about head position during surgery as I feared having another small stroke during surgery if my head was turned. Now, my mouth is lopsided. I cannot smile as the left side just gapes open and can’t talk properly. I really tried to get this across pre-surgery but had the feeling that my concerns about “vascular” were not heard or taken on board as much as I would have liked.

So, the surgeon is supposed to be calling me today sometime, and to organise a wound check prior to me flying home on Thursday. I have to fly as my accomm will run out and I don’t want to pay for a hotel to be on my own so will fly home and at least be able to stay with a friend and then tee up some support if I need it at my place over the weekend.

it was not going to be a straight-forward, dream patient, kind of deal for me, and I think this contributed to the surgeons reluctance. I have considerable neuro deficits from, what I believe to be untreated tia’s and some small strokes, all these years leading up to the ES dx and surgery. On top of that, am living with chronic pain and such from EDS - have been on fentanyl patch for 18 months so you can imagine I wasn’t sent home with anything stronger than panadol.

I have had terrible fevers and chills today, managed to shake most of that off I think by now. My wound site got very red and been trying to keep ice packs to the site but so sore that the pressure of the ice pack is a bit much to bare.

So not your average patient, not a textbook presentation when all the other stuff has clouded the mix for me. I do know, and have done now for months, that the vascular ES has been at the middle of all of this and literally beating the hell out of me full-time now for 4.5 years and prior to the head/neck injury that brought that on, part-time for 5 years. Horrid to think it was there on the imaging and nobody noticed. I was having tia’s and vascular accidents then the accident in 2012 nailed me and was, I believe, having very small complete strokes which show up as lesions on my mris.

I really tried to discuss this with the surgeon and he was reluctant to accept it I think, since it had been missed and misdiagnosed all these years, saying “functional neurological disorder” which just, as far as I can tell, is a fancy way of saying “we don’t know/it’s all in her head”… you know the drill fellow eagles, being mismanaged for so long, it’s really hard to face yet another white coat who could dismiss or worse, mistreat. So… one hellova journey, one that has fundamentally changed me, pushed me and broken me so many times…until I figured it out!

so, I hope the call goes well with the surgeon, that I get some answers, if I still have the new mouth weakness when I get home I will see if I can get into a neuro apt at the public hospital up there to assess for stroke. Not what I had in mind for recovery but…gotta be done if this is the case.

I knew, at the grand old age of 48, will all this under my belt, that I would need a little support and help for a week following surgery, as I have some support needs physically beforehand. I use wheelchair and mobility aids and live alone ya know?

will keep you alll posted and thanks so very much for the opportunity to air and share

Della, Oz

Good luck Della - it sounds like you have a good plan worked out. If it helps at all, my mouth was lopsided after a couple of my Eagles surgeries and it took a while (several months after one surgery) to go back to normal. The surgery really affects all kinds of nerves, so it’s hard to tell so soon after surgery what’s going on. Get as much rest as you can. I hope you find some relief soon.

1 Like

It could well be irritated nerves- others on here have had a drooping face, and tongue weakness, it’s not uncommon. Sorry that you have other problems to deal with… hope that you can get help from friends, and answers from the doctor- you need to get checked out in case you have the start of an infection.
Thinking of you,

1 Like

hey redness and fever receeded by mid morning.

seeing surgeon briefly on the way to airport tomorrow, quick wound check so he can advise my doctor up in far north qld when the stitches need to come out. He has understood that, as I have EDS, the stitches need to be left longer and has used lots of internal where possible so that is good.

thanks all, and thanks so much for the lopsided/tongue weakness feedback, you can imagine after having vascular accidents all these years, it’s never far from my mind.

looking forward to being in my own home, being warm and seeing my lovely cat Thor


Have a good trip Della. I hope everything goes well and continues to improve.

I don’t know if you ever got this advice, but make a point of sleeping with your head elevated. An elevation of at least 30 degrees was recommended by Dr. Samji. I found I couldn’t sleep flat for at least a month post op as my throat would swell. Head elevation while at rest also helps reduce neck swelling, & I presume w/ less neck swelling, there is less pressure on the already irritated nerves. I was prescribed a course of prednisone to help control post op swelling. Also, half my tongue was paralyzed after my first surgery. I didn’t have mouth droop, but the tongue problem made it hard to talk & eat so I totally sympathize with you. It took about 9 months to heal. After almost 2 years, I’m about 98% back to normal. Nerves are slow to heal & require patience, but thankfully they do heal!!

Hope you & Thor are resting comfortably together as you mend!


5 days post surgery

so I managed to make it home to FNQ - not without drama, they nearly didn’t let me on the plane.

Am experiencing cognitive glitches and slowed processing, lots of little problems but not as extreme a difference as in 2012. I definitely think I have had another small stroke.

other than that, wound seems fine, swelling and massive bruising but I am covered in bruises from having EDS as well, every single place they put a needle and of course the wound site, amazing bruisy shades.

Have been hit by a bus and all I can do is ride out the next while resting as much as possible, keeping it as simple as possible for my brain to try heal and focusing on the positive that …I am alive and home.

I knew it would be tricky. I know I tried with everything in my power to get across to them that the ES in my case is vascular. I don’t feel that this was properly acknowledged and now, what is done is done. I have certainly survived worse.

thanks everyone, couple of pics of wound on 5th day and an eds bruise example.
x Della

Congratulations on making it home safe and sound! Your site looks good. It actually looks a lot better than my vascular surgery did a week out, so I think that’s a good thing! I hope you can continue to get good rest and get your functioning back to normal. I think you’re on a positive track now.

Glad you’re home safely- don’t expect too much and take it easy as much as you can. Bizarre things can upset healing- trying to sweep the floor after a week was a killer for me! You might have to let those cat hairs build up for a while!!
I had lots of bruising come out on my face- I wonder if they’d dropped me! Another member thought it might have been from clamps, but I found out when I went for follow-up that it was from the sensors they put on the nerves to monitor them in surgery! So you might have more bruising come out the next couple of days…
Take care and God bless.

Sure hope your vascular symptoms are beginning to subside. I suspect you were having so much trouble right after getting home because of the stress of the surgery & your difficult trip home so close together. As has been said REST, REST & MORE REST is what the doctor (& experienced forum members!) prescribe for a good recovery. Actually rest mixed with a healthy dose of patience is the best remedy. Let your friends coddle you. Don’t do anything for yourself for several weeks that someone else can do for you (that is if there is someone else around to do it). Keep w/ the pain meds as prescribed unless you don’t need them. Keeping pain at bay is also key to quicker healing. Sleeping w/ head elevated +/- 30 degrees is also important. I needed to do that for 4-6 weeks post op to keep my throat from swelling at night.

I am praying for you & hope you’re seeing positive steps toward healing.

thanks everyone

gosh… so just had abour 48hrs of intense ES. No doubt from the swelling and stuff but whoa… all the familiar knife pain in the ear, searing pain in jaw, massive headache and face pain, thankfully I had read on here that it can really flare post surgery.

I am trying to be upright a bit at night and in all the process have really had an astounding revelation.

back in 2012, all the horror of not being able to recline or lie down for months with the extreme pressure in head and whoooshing and pain all along the base of skull, all of it, is identical to now, post surgery.

I am now 100% certain that back in 2012, I must have broken a styloid or fractured a stylohyoid ligament. This caused all the vascular accidents and essentially left me with an acquired brain injury, neuro deficits and raging ES.

Surgery is pretty much like breaking a styloid yes? I mean, if it is cut out and the ossified ligament cut too, that is like a break.

this is identical to then.

except… I am not experiencing this for the first time. I am not experiencing the level of brain damage of 2012, but it is there… more like I am back about 2 years in the brain healing process. Horrid that these symptoms are subjective and I have never been able to get them across to anyone.

another realisation is that…goddess this is actually funny and I can’t help but laugh about it…here goes:

up until surgery, since 2012, my face (which would always droop right side with vascular attacks) has been a bit slack. It’s evident in all photos/videos etc. In all these years, when I poke my tongue out it went off to the left a little. I struggled with pronouncing s’s, th’s, f’s for example.

NOW ha ha haaaaa FOR THE FIRST TIME IN 4.5 YEARS, my face actually looks symetrical.

As the left side is weak from a small stroke (left face/mouth, arm and a tiny bit in leg) now I have evened out!

when I poke my tongue out it goes all the way off to the right now and some of this might heal with the nerve healing.

how funny is that!!! I swear it’s like a cartoon or something, took another opposite blow to even me out visibly.

I see my dr (gp) tomorrow and don’t imagine he will even notice a thing different, but will be telling him all this and asking for a neuro eval and to set up some rehab for me at the local hospital in a few weeks time.

what a journey! truly been a rough ride and I am so so grateful for this board to air and share, none of this stuff is easy to explain to those who haven’t experienced it.

Am resting, am positive, am doing my damnedest to simply be…I feel like I am at a “tide out” period and if nothing else, at least I have worked all this out.