I have right sided styloidectomy booked for 31st May with Mr Hughes. To say I am nervous is an understatement!
Can anyone please offer tips on what I will need to help me in the recovery period?
Some specific things I’m concerned about…
I have mcas (mast cell activation syndrome) so would like to avoid steroids if possible. Is this a bad idea?
Will I be able to eat afterwards? What about teeth brushing?
What about sleeping position? Due to my mcas we haven’t got a sofa or any armchairs. I can hopefully find more pillows that I don’t react to but probably not any special shaped ones. Pillows are tricky!
I use a mouthguard at night due to jaw misalignement (it protects my teeth). Has anyone got experience of using their mouthguard after the op?
Also any general advice, on anything I might find helpful, would be very much appreciated.
Thank you!
Jacqui
I’m glad your surgery is coming up soon. @Jules wrote a good post all about surgery:
If you scroll through the post till you get to the section called Recovery from Surgery
there is a lot of good information there including links to other posts on this forum.
You will be able to eat after surgery but many people experience a sore jaw for a few days to a week post op so a soft diet works best. In rare cases, swallowing can be challenging for a few days in which case a liquid diet works well. I wasn’t able to eat normally for awhile after my first surgery so my husband would cook a meal & my share would go into our blender along w/ broth, milk, water, or whatever seemed the best fit for the meal. Blending a full meal made it look awful, but it always tasted good & was definitely easier for me to consume. Premade protein drinks or homemade smoothies are also good for an easy meal.
Many of us have found steroids to be extremely helpful in reducing painful inflammation in the early days post op, but if they’ll be a problem for you, you can just make sure to be very diligent with your pain meds & ice. Also start taking a laxative & stool softener as soon as you start on Rx pain meds to prevent your “plumbing” from getting clogged.
Head elevation when sleeping after surgery is pretty important as it will also help reduce swelling in your throat & neck. Prior to surgery, do what you can to find some extra pillows you can use to help with that.
I was able to brush my teeth first day home & also use a mouthguard & was able to put it in the night I got home from surgery, but we’re each different. Bottom line is it won’t hurt for you to try to brush teeth & wear your nightguard.
Great news that you’re having surgery soon! I don’t know much about MCAS, but we do have a few members with this, so hopefully they can give you info about avoiding a flare…
I wasn’t able to brush my teeth properly after my first surgery as I couldn’t open my mouth wide enough; I just used a childs toothbrush & did it as best as I could! It was about a week or so, so not the end of the world…
The link @Isaiah_40_31 gave you has lots of info, & a surgery shopping list if you’ve not seen it. I’m not sure if it’s on there, but dry shampoo might be helpful too as hair washing can be tricky to start with…
I didn’t have steroids, but had my surgery with Mr Axon; he puts a drain in for 24 hours which helps with swelling. I’m not sure if Mr Hughes does that as well. If you can tolerate ice packs and find pillows to keep you propped up that’ll help so hopefully you’ll be okay
Will pray that your surgery is successful!
Thank you very much for the tips good idea with dry shampoo, I had been wondering about hair washing and considering whether I should have a buzz cut beforehand!
I have had surgery with Mr Hughes. He is a very skilled surgeon so you are in safe hands. Here are my suggestions:-
Propping up will help you, this is easy to do while in hospital bed. They will put drain in neck after surgery and remove it before you leave hospital the following day. Do not let nurses give you fluids bag after op, it makes neck swelling worse.
Ice packs they have for neck are not great. But they do have ice. So take zip bags/thin pillowcase & ask them to fill with ice so can gently ice swollen neck areas when feel up to it. Also sucking on crushed ice can help pain etc from inside throat. I took a small thermos flask & asked them to put ice in it to cool inside.
I asked for liquid pain meds as easier to swallow. Had liquid codiene four times a day & used morphine if needed for breakthrough pain.
Liquids/very soft foods best. Cleveland have nice smoothies (can order off menu), soup, yoghurt & soft things like eggs. Avoid things that need lots of chewing.
They try to take obs all night. If you are stable I’d ask them to skip one in middle of night if you think you can sleep.
Nice wide corridors to walk in so take some loose comfy clothes to walk. It helps body recover/lymph fluid move.
Pharmacy are not good so ask for all meds well in advance.
As soon as wound heals at surface start using bio oil on it. You won’t see Mr H until 6 weeks checkup so start much sooner. Consider using CICA gel plasters to speed scar healing/flatten scar. Or silicone gel if prefer.
Get soups/smoothies/soft meals ready in advance for your return to home.
Continue ice etc while swelling remains. Can use Comfiwave neck once wound allows, it reduces swelling in neck & can be machine washed/low tumbled dryed(image attached).
Could use Hivamat 200 practitioner (on Physiopod website) to help treat fluid if needed. It accelerates scar healing/reduces swelling faster.
Jaw guard should be ok. Jaw May get tight/not open fully so you may need to practice opening/closing jaw when able to recover full jaw opening.
Be prepared for fact not an instant fix as swelling post op May not help & if you have ves then brain & body need time to adapt to new blood flow changes in head/neck.
Thank you so much for your thoughtful and detailed reply, this is all incredibly useful.
I have one of the Physiopod practitioners in my nearest town so I will get in touch today.
One further question - when you say to get the meds in plenty of time, because the pharmacy is slow, do you mean I should get hold of them before the op? I had been wondering what happened with meds, especially since we have health insurance that won’t cover meds.
Many thanks
Cleveland pharmacy had practice of dispensing each dose “just in time” during my stays. They do not send meds up for nurses to dispense. So get overwhelmed and pain meds do not arrive in time. Was bad on first time, so second time I took my own meds and if too late I took them with nurse supervision. Not ideal. Nurses agreed was an issue.
No harm in talking to pharmacy about pain meds you want & to ask for drugs on discharge to be prepared early, or you may be stuck waiting on discharge.
Hope the pharmacy have improved, but I would not count on it. D
Good luck with you surgery! I’ve just had mine and day three post op. Not much I can add that hasn’t already been said.
But I would say, I was very anxious and nervous, but I feel that I was incredibly well looked after at Cleveland clinic. The anesthetist was great and helped me to feel at ease with everything and the op went well. I could eat as soon as I woke up and the food was great so had loads! My jaw felt fine initially but now on day three it’s quite stiff and painful first bite but then it eases so eating is still possible. Also a bargain for visitors to get three course meal and a drink for £12 in central London! Pleasant surprise!
Ice is definitely helpful. I’m using a soft collar to hold a gel ice pack in place. The gel is good as you can mould the shape of your neck and soft collar holds it comfortably. I would get on the ice before you need it and keep using regularly. I could also use my sonic toothbrush no problem.
I think the worst thing post op was the drain because it can tug on the Incision area a bit if not careful. But it was more discomfort than pain. If not for that I could have easily been very mobile afterwards.
I don’t think I was given steroids. Just celecoxib and paracetamol, IV antibiotics and dyhicodeine when I asked for it. Pharmacy had it all set up before the op and I was given meds whenever I asked if I was allowed!
Earplugs and face mask probably a good Idea. I use a blackout mask anyway for dry eye so used to it. The computer screen in the room stays on all night! Otherwise lovely quiet rooms and was only roused for them to put a blood pressure cuff on and stick a thermometer in my mouth briefly.
Give me a shout if you need any specific advice about hospital etc? Not sure if you had parking / hotels etc sorted already?
He clearly does a lot of these… it’s very reassuring he’ll have practiced you guys before me Just kidding… I went to see JH because he’s experienced!
@Warrick were the Iv antibiotics OK? I’m sure I’ve had them unknowingly without an issues, but when my last C-section split open I was given some and it wasn’t a nice experience! I had to have them for about 10 minutes every 8 hours and it stung badly. think maybe given the situation I might have been given the strongest stuff. It’s the only thing I’m nervous about.
No not at all. One nurse wasn’t quite as careful and it stung the back of my hand a bit but I think that’s because she put too push pressure on the iv line. The drugs going in felt nice and cold up my arm! Didn’t experience any adverse effects from them! Apart from the unpleasant taste in your throat when they inject the saline!
Thank you. That’s reassuring! The stuff they gave me last time felt like acid in my veins & I had to have them for 3 days. I know I had antibiotics after previous surgeries and child birth with no issues, but this one was completely different. My entire C-section wound opened up leaving a deep cavity, so I think it would have been the stronger stuff. I think I just have some trauma over it I won’t worry now, thank you. I’m so fed up of my awful symptoms now, I’ll be there ready to hand him the scalpel!
Ps - the C-section incident occurred because I didn’t rest! Make sure you take time to recover.
Just be ready to wait around all day for surgery! I was admitted at 06:30 and not in surgery until around 1400, but they first told me it would be almost 1600 before I would be having it! A bit annoying as I had mentally prepared myself to go straight in!
And Ive just been told now that they threw my styloid in the bin! I hadn’t asked for a photo before so it’s my bad, make sure you do ask if you want it!
Thank you, this is all very helpful. Glad to hear the food is good and hopefully I will manage to eat, same as you!
Is there a telly in the room?
Can I ask what is the soft collar you are using to keep the ice pack in place? Is it a separate thing or just part of your clothes?!
Do you know whether the antibiotics are a standard thing that everyone is given or was that something you needed in your case?
No hotel needed as I am getting the train down first thing Friday morning and husband is picking me up on the Saturday. I think there is drop off parking right outside so that should work okay.
Do they really chuck you out at 11am on the Saturday? It looks like they do from the hospital info but that seems harsh!
Hope you don’t mind all the questions!
Hope you continue to heal well.
@Warrick Oh no way, that’s annoying re not getting a photo! Something to remember if you go back to get another done!
My previous surgeries have been NHS, so my expectations aren’t too high tbh. Hanging around is very annoying and I get very hangry (happily won’t eat much until I know I can’t eat then I’m awful).
Just kidding… I went to see JH because he’s experienced!