Surgery with Hepworth coming up in early May

[Isaiah_40_31]

@akc -

I could only sleep on my back (I’m a side sleeper) after my first ES surgery, & I put pillows on top of my wedge pillow to increase the incline but graduated them down for shoulder & back support. I did have a small softer travel size pillow that supported my low back which helped a lot as I also have back issues.

I have also never heard of nerve monitor clips being put on the tongue. Mine were all external, & like Jules, I also got some interesting bruises which I eventually figured were from the nerve monitors.

Your timelines for starting nerve stim/massage & scar cream looks good.

@Jules answered your remaining questions excellently so I have nothing to add.

[akc]

Ahhhhhh - NOW I understand about the ice! That makes so much sense - thank you I’ll have to figure it out with the elevation… I tested it a few times and it did not go well… but if it needs to be there will be a way

I’m also now more curious about the nerve monitoring especially after what @Isaiah_40_31 added… as I heard that it was a Hepworth surgery where this was done. (and another patient asked for it not to be stitched to tongue and they apparently tied them to teeth???) So I’ll ask how he does that.

Thanks also for the link @Jules - I have feeling I’ll be using that…

[akc]

Had my pre-op with Sarah today. Feeling really good about the surgery. They definitely don’t know what the average patients go through for recovery though… when we talking about some of the prep stuff she kept emphasizing how most patients have very little pain… just some discomfort and a bit when swelling peaks…
I sure hope I am one.

I am feeling good about this now. I’ve been really on the fence with the “what have I gotten myself into” and what if it ends up making me worse…

But 2 days ago I turned the corner and I am now really zen about the decision. This is the right thing to be doing. Whatever the outcome (and all outcomes will end up with good information!) this is the right thing. It feels good to feel so good about it.

This next part is dedicated to @Isaiah_40_31 for your very helpful straightforward advice on the topic:
Last night when my head wasn’t letting me get to sleep, my mind started singing (I had the results from my “stool softener pre-test” and was thinking “but what if… you take the stool softener say the day before and then uuuurgently have to go right when they are about to wheel you back:” …And then this little word change to a song we (probably) all know popped into my mind:

Get that music going in your head and your dancing shoes on:
Let’s talk about poop, baby
Let’s talk about it and me
Let’s talk about all the hard things and the soft things it can be
Let’s talk about poop

Are you singing and dancing with me, Isaiah? Anyone else?
If nothing else, I do amuse myself

[DeeCeeNorth]

@akc, you cracked me up! Thank you for that! I’ve actually thought about the same thing… when’s the best time to start? I was planning on doing a trial run this weekend, lol!

Your surgery is on the 8th, right? I’ll be thinking about you… sending prayers and lots of positive juju!

I’ve got my bilateral on the 22nd in NC. I totally get that “on the fence” feeling! But I am feeling better about it every day…. especially since I’ve been noticing that it seems like I can feel the styloid more and more on my left side. I’m curious if he’ll do additional scans prior to surgery (my last ones were in November). Still a little fence-riding with removing the right side, though.

I’m starting to collect all my recovery items… ordering a wedge pillow, ice packs, balm for the incision, etc. So many wonderful suggestions from this forum!

Keep us posted, @akc!

[Isaiah_40_31]

You’re HYSTERICALLY FUNNY , @akc! Yesss! I laughed & laughed! Love your sense of humor!

I’m pretty sure that if you need to use the bathroom as they’re wheeling you into surgery, they’ll wheel you over to the bathroom & help you get your IV set up into there as well. They don’t want a mess to deal with during surgery for sure!! I actually had that concern with my surgery but thankfully it wasn’t an issue.

My suggestion re: timing for taking the laxative/stool softener is do not take it the day before surgery, but take it as soon after surgery as possible on surgery day, & daily after that as long as you’re taking the Rx pain med.

It’s great to know you’re embracing your surgery as a positive learning experience. I will be praying for the best possible outcome. Your & @DeeCeeNorth’s surgery dates are on my calendar. I will be praying for both of you.

[Jules]

I’ll never get that out of my head now Hope you work out the timings

[akc]

Yes! I’m having the exact same experiences stop it sky. I am having the exact same experience as you are. I’m more and more noticing where it is on my left side. There was a day earlier this week where every single neck movement was just jarring me in that spot and then right at the base of the neck and I was getting zingers all over my face and side of my head and I. That was another point where I thought to myself, gosh, if nothing else this should at least partially resolve after surgery. My styloid isn’t long like yours are, it’s just thick. I will definitely be thinking of you on the 22nd and sending all sorts of good juju your way too. It’ll be great to hear of your recovery in this forum. Ha! And maybe we should both sing our new “poop song” as they are wheeling us down the corridor. …ok, maybe just in our heads…

[akc]

Keep it on hand for a rainy day

Skip the day before and then take asap post surgery sounds like a great plan. Thanks, @Isaiah_40_31

[akc]

The skinny on what Hepworth did, what he found, and then some questions :-):

Shaved styloid process down to within 1 mm of skull base

Repositioned jugular about half an inch further forward to be away from C1
Jugular vein was four times larger below the hyoid bone than above.
Main reason was the amount of scar tissue adhering to it.
Scar tissue has been removed, styloid was also pinching it but the scar tissue was the main offender.
The big unique point was (and this is a direct transcript from what Dr. Hepworth said, my husband recorded):
…”Top centimeter (of jugular) was a big tangle of the vein and three of her nerves
Her spinal Accessory nerve shoulder moving nerve
The tongue protruding called Hypoglossal
And the palatal elevating nerve called glossopharyngeal nerve
So they were all kind of unusual tangled up around her jugular vein
And I have the good fortune of looking at that part of a person multiple times a week, this is in the 99th percentile of tangled up up there”
I did have to stay a second night in hospital as I had an MCAS reaction to the general anaesthesia (I had told them I have MCAS and should not be given that kind as int’s a known histamine realeaser but… oh well – not the end of the world)

This is fantastic news! I was convinced and yet hoping with fingers crossed that my accessory nerve would be involved as those muscles cause me so much trouble, so involvement means they will get better
I am not doing very well at the moment and can’t use my left arm/hand, but if my brief google is correct one of the other two may actually be responsible for the pain that I get with sound in my left ear; and if that is the case it would be… I would be beyond words with joy.

I do have a couple of questions and will pop in as they come up.

First though, it’s a bit of a rough road for me right now at least, but I am okay with that.

I of course have the shoulder slump of my left arm and can’t lift it much. But I am also having some increased face pain which I trust will go away.

Questions:

The neck muscles are pulling really hard. sThis makes sense as they were just assaulted. At this point should I not do anything about that, or should I be doing gentle stretches (but not to a point where it hurts so that I don’t further reduce ROM?

I am pretty medicated and spending significantly more time asleep tthan awake, maybe upright for an hour total each day. Is this good? I have read in here that we need the neck to relax and so it certainl will be by my sleeping most of the day away…?

We are supposed to walk for 10 minutes each hour when we are awake…. Well, I’ve done that once since we got home on Friday… should we be setting alarms for us to get me to walk maybe 3 times a day? More?

Should I be doing anything with the left arm when I am awake? My thoracic outlet syndrome symptoms have gotten really bad in both arms, so the only thing I know is I should not be doing this (typing…) but I do need a little help an the ditate function on my laptop is pretty dead now. My gutt tells me that I shouldn’t be doing anything with eather arm (the right one has been triggered as well).

Thanks so much for your thoughts. Ps my fingers are doing random spasms so lots of extra characters were added by them (I know this will stopw donw the road )

I o have o call out that how wonderful Sarah (Hepworth’s right hand in surgery) was. She came by to check on me after the first night and put in orders as my pain was out of control and the hospital had not increased meds all night), and then stopped my the second morning as well on her way to a thing with her daughter… so on her day off….! Above and beyond!

And oh yes, “let’s talk about poop, baby”. I did everything right (including using those bullets since Saturday) and yet… it’s still not coming out… I have a call in with my pcp this afternoon…)

[Isaiah_40_31]

Thank you for the detailed update, @akc! I’m sure the moving of your accessory nerve during surgery is a big contributor to your neck/shoulder pain/arm immobility now, but that should gradually go away. Are you icing your neck several times a day & are you taking prednisone to help reduce inflammation (if you’re taking it for MCAS, you may need an increased dose for a few days to help w/ your surgical recovery)? If no on the prednisone, & your body can tolerate it, you should ask for a 10-14 day Rx. It will be helpful. Also, sleeping with significant head elevation is really helpful. I know you’ve done your homework so I expect you’re doing these things w/o a reminder being necessary.

Don’t worry about walking 10 min out of each hours. That’s excessive this early post op. One to two 10 min walks per day in the first week or two after surgery is adequate. It’s mostly to get your blood circulating & to help reduce the risk of DVTs in your legs.

It’s still pretty early in recovery to do anything w/ your left arm. I think you can let it rest this week & perhaps start working on range of motion starting in your second week of recovery.

Re: poop - Drink, Drink, Drink. Keeping your gut well hydrated helps immensely with motility. There’s only so much laxatives can do if it’s dry in the colon. I hope your PCP had other good suggestions as well.

[Jules]

Poor you, being in the 99th% of being tangled, not a statistic you want! But hopefully with the styloid and scar tissue out and the jugular moved will give you a good reduction of symptoms in the long run…I agree with @Isaiah_40_31 to rest if you need it, not to push doing any stretching yet. It’s quite common to get some pain from nerves which have been irritated by surgery, hopefully the face pain will settle down soon.
Will you have a post-op chat with Dr H at some point? The questions about stretching is something you can ask him about, I definitely didn’t start doing any for at least 2 weeks.
I hope that your TOS symptoms ease soon (&the poop!)

[akc]

Thank you so much at Jules and Isaiah.

jumping straight to a current question and thought : Is it possible that using Ice is raising my intracranial pressure? We ended up coming back to the hospital last night and they kept me and so I wasn’t able to use Ice at all until a couple of hours ago. my pain has been fairly high and my neck is a little more swollen so when I got the opportunity I put an ice bag on my neck and one at the base of my skull where it’s also really triggered. I took it off at a reasonable amount of time from the neck; kept the one on my base scull for longer. Snoozed in and out.
And my head is now exploded my vision is flashing and blurry, my thought process is significantly (a lot!) diminished, intense ear pressure/fullness and I am shakier etc. etc.
Oh, And my neck muscles are angrier and tighter.

Any thoughts?

Heat proven in the past to feel really good on me but definitely has increased head pain… I think by inflammation?

[Isaiah_40_31]

@akc,

I’m so sorry you’re back in the hospital with worsening pain. You noted you had a break in icing, so I’m wondering if swelling got out of control enough that icing wasn’t able to help as it had prior to your hospital check in last night. The brain fog, etc. is likely due to inflammation in your neck squashing your IJV & nerves. Getting that under control should help reduce those symptoms.

Another option is that since ice reduces the circulation to the iced body part, which helps reduce inflammation, which in theory helps stimulate circulation to the area when the ice is removed, it’s possible your body is over-reacting to the lack of circulation by increasing blood flow too much thus causing your current symptoms. @Jules had problems w/ ice causing her more pain than help post op so she switched to heat. Perhaps, since your IJV is flowing better now, post op heat would help you more & maybe you wouldn’t get the headaches you got before surgery? I think it’s worth a try.

In the meantime, if you haven’t been given a course of prednisone or a non-steroidal anti-inflammatory, request it immediately to start helping get that inflammation down.

I’m praying for you now & hoping your painful symptoms subside quickly.

[akc]

Super quick reply to send you both a hug. I am on steroids. A 14 day pack. Can’t imagine what it would be if I wasn’t on that
Had both problems with ice and heat before, but, this is a time to try heat again. The worst thing that’ll happen is I’ll have a nasty little escalation and then it will go away. Sounds like a game plans
Thank you!
Oh and PS I broke my laptop. 100% down to brain fog and pain head. I am pushing the thoughts out of my head about what that might mean in terms of all the stuff that I have not backed up anywhere. Will deal with that when we need to

[Isaiah_40_31]

I’m so sorry about your laptop! The data may be retrievable by someone knowledgeable. My husband & son are masterful at that stuff when I’ve done stupid things with mine. I have a Mac so there’s always the Mac store if they fail me.

I’m glad you’re on steroids & yes, things would be much worse without them! I hope heat fixes what ice “broke”.

Wishing you good rest tonight & a much better day tomorrow!

[Jules]

Poor you, it sounds a very tricky recovery for you! I did feel that heat helped my muscle & nerve pain, but too much heat did increase head pressure! That’s probably not very helpful for you! Ice has always made my nerve pain worse as @Isaiah_40_31 says…I hope you find some balance to help you between swelling/ inflammation/ heat vs ice!
And that you get your laptop sorted too…

[akc]

Thank you both so much. Yes @Jules , that’s exactly it, Heat feels good until it doesn’t; that still seems to be the case. My shoulder got so excruciating that I couldn’t bear to be upright for even 5 seconds. We kept me in bed all day yesterday and most of today and that has helped. I’m not sure what the solution is. I’m hoping that my PT will be able to help guide me in the right direction. Do we know of anybody else here that has had pretty excruciating pain from the accessory nerve where they could extend to be in a position where the shoulder wasn’t 100 percent supported from behind as if lying down? If so, I’d love to have a quick chat with them to see if they had any tips that they came up with to allow them to be upright for at least a few. Day to do those short walks.
Honestly, if it wasn’t for this nerve stuff that got kicked off, the recovery from this would be really really good. I only will pay medication for the shoulder problem. And so I time taking it with when I’m going to be upright for more than a few minutes, as in a shower :).
I definitely have first weight syndrome on the left side which makes sense. It is always painful on that spot and increasingly so when I am talking which is rare so that’s a good thing but the first couple of bites of food can be anywhere from uncomfortable to Yikes Yikes Yikes holy Yikes! Thankfully it’s just the first couple of bites and it goes away quite quickly. I know you had it much worse @Isaiah_40_31. I definitely have a lot of zingers going on now as well as the numbness is fading. I think quite a lot of nerve activity is very loud and unpleasant when it comes on one specific spot that I think is tied to one of the nerves that he had to scooch around a bit. But again, none of that would make me need to have pain medication. If I needed to talk much that would be a problem. right now for example the left side of my jaw is getting really quite bad because I am using a dictation of course. Or if I couldn’t drink most of my food (definitely not chewing except very soft foods and occasionally right now) that would be difficult. The actual incision area is really unremarkable in terms of comfort level. Darn this shoulder though I really really really hope that whatever is happening that’s making it so exquisitely painful that I can’t stand to be upright is something that resolves really quickly. Not being able to be upright and move occasionally is not something that I want to have to deal with for long.
Hubs got me a new laptop If you don’t need to do such with it you can still get a really affordable device he chose the yoga since I like to flip mine upside down and rest it on a shelf and light on on the ground with my funky glasses and watch a shell like that. Super lucky, they were able to restore all of my documents. Now, I need to learn my lesson and start doing regular backups.
He asked, a little bit of heat on my jaw will be much needed now but I just wanted to check in and let you all know that I’m still here. I got a little bit down with the shoulder stuff and the immobility that that brings. But we’ll deal with that. Will get better

[Isaiah_40_31]

Hey @akc! Thank you so much for the update. I’m so sorry about the shoulder pain & as always, you made me laugh w/ your FBS Yikes description. I can still relate to that & am glad yours isn’t an overwhelming problem.

Your attitude toward healing is AMAZING especially with the shoulder pain. I’m wondering if a sling like people wear after shoulder surgery could be helpful? They’re a bit bulky w/ the way the arm is supported so the shoulder doesn’t have to support the arm’s weight, but maybe it would be useful. Just a thought.

Zapping, zinging, burning, cooling sensations are all good indications of nerve recovery. Those aren’t the most comfy feelings but they are positives!

I will be praying for your accessory nerve to calm down. If it continues so sensitive, a nerve pain medication might be in order just for the short term.

[Jules]

I’m so sorry that the shoulder pain is still grim- I remember a couple of members commenting on that post surgery, but not to the point that they couldn’t be upright for long I don’t think… @Isaiah_40_31 suggestion of a sling sounds like it might be helpful, & nerve pain meds although they do take a while to build up enough to work…I had a quick look online & there are shoulder support braces for rotator cuff injuries, not sure if that would help, & most sites recommend NSAIDs if you can take them. Hugs and prayers for you, hope that it improves soon…

[akc]

Thank you both again so much. I am already on Gabapentin and did recently increase another 300 to try and help with this nerve pain. I am one of those odd ones who has really not benefited from medication much and we have run the gamut for nerve pain medications on accounts of my severe neurogenic thoracic outlet syndrome. But I brought The Gabapentin amount down in advance of this surgery so that I could take it up again. Weird theory but there is something in there and hopefully it will help. NSAID allergy of course:). And I did get sent home with a shoulder sling, but cannot figure out how to use it in a way that actually alleviates pain. Odd. I do have an appointment with my TOSPT tomorrow. My goal will be to get some do’s and don’ts from him tied to what’s going on with my shoulder to make sure that I’m not making anything worse. And hopefully to learn how to use this sling. Fingers crossed
I’m going to go through the site here and find a couple of Constantino patients to see if any of them would be willing to share with me the post surgery instructions that he sends them home with. Given how stiff my neck and face muscles are, I am a little bit concerned about what to and not do with them. The only instructions on Hepworth’s paper were about the actual wound itself. Although not even anything about touching or massaging it which I have heard other people were sent home with…? If I can get instructions that other people have been given by Constantino however, it is essentially the same surgery and so I’m sure I can use them. At least there will be guidelines there about touching, when to start gentle range of motion, et cetera