6 month post right sided styloidectomy/C1 resection update
So it’s been just over 6 months since the above procedure and I thought it’s about time I gave you guys an update. It’s been a mixed bag! After the procedure I developed a frozen left shoulder (I had a frozen right one 2 years prior) and phlebitis in my left arm where the cannula was (a student nurse got a bit too vigorous when removing it). Thankfully the phlebitis stopped being painful after a few weeks but the frozen shoulder was more of a problem as it stopped me doing physio exercises properly for a few months. Anyway in March I had steroid injections in my shoulder and since May it’s been relatively pain free.
After the surgery my neck felt quite out of whack and it was frustrating not to be able to do the exercises that had previously relieved the muscles tension and pain. However since mid-April I’ve been able to go at the exercises much more effectively and this has helped my overall condition. I can’t say that any symptoms have disappeared since the surgery but I think there has been a small improvement overall. I’d love to comment on the openness of my right jugular vein but unfortunately my 6 month CTV has been postponed until at least August. Once I have that I’ll post it so we can look at some actual evidence.
The biggest challenge is still the right side of my neck. It is very crunchy and grindy (crepitus) in the upper vertebrae region, more so than before surgery, and still sometimes painful. I still debate with myself if this is indicating ligament instability or if it is uneven muscle tension doing funky things. It may also be due to things finding a slightly different place to rest now there’s more room in there. Regardless as I’m now at a point where I can work from home, exercise moderately, socialize moderately, be a half reasonable father and husband I’m not prepared to take the risk of further surgery to fuse the vertebrae based on the varied outcomes I have seen in various support groups. My plan is to continue the physio exercises and massage until at least the end of the year before considering any more surgical interventions. I’ll see where I am at that point and go from there. If I decide to do anything significantly different I’ll share it here.
I’m sorry there’s not anything massively ground breaking here and it’s taken a while to update. I’ve found recovery from this one quite an emotional roller coaster and had to take a step back from the health groups for a while to manage my own wellbeing. I wish you all well wherever you’re at along the journey!
Thank you so much for your update, @M_UK. It sounds like you’ve done your due diligence as far as taking care of yourself post op & that has made a significant difference in your ability to function. I was very gald to read that.
I’m sorry you haven’t experienced greater recovery from your symptoms & that you’re dealing w/ a frozen shoulder (even though it’s “thawed” a bit). I sympathize w/ you there. It will be good to know how your IJV flow is once you get that venogram. I hope you find things are vastly improved.
You’ve made some good postulations re: the possible causes of your neck crunchiness & a wait & see approach is a super plan. Time will continue to heal & reveal what may need to come next for you which hopefully is nothing more than the PT & gentle exercises you’re already doing.
We’ll look forward to your updates as time passes. Really do appreciate this one.
Sounds like you’ve had a really rough time with recovery, & it obviously hasn’t given you the improvements that you’d hoped for, but pleased that you can have a somewhat normal life…do you know what caused the frozen shoulder, was it your position during surgery, or maybe the accessory nerve affected? I don’t blame you not wanting any more surgery right now & seeing how much you can improve without it.
Thanks for updating us, I have still been thinking of you & praying for your recovery. Let us know how things are in a little while if you can.
Thank you both for your supportive comments. Unfortunately I do not know what caused the frozen shoulder. I wouldn’t be surprised though if its all connected somehow! Yes I’ll continue to update with any changes or new info.
I found hanging from a horizontal bar helpful but I did need a steroid injection as well. I manage it now by just trying to keep the shoulders as mobile as possible.
It’s been a while, so he mightn’t reply, I think @M_UK had surgery with Mr Axon , but Mr Axon doesn’t seem to be doing the surgery any more…
The only UK surgeon doing C1 resection that we know of is Mr Timothy, but I don’t think he does styloidectomies, so if that needs doing as well it wouldn’t be best to check that out before seeing him…
