Finger fusion and tendon repair etc

[Dragonfly4]

Good Evening All

Some of you guys know me but for brevity and basic info, I have RA/SLE/Reynauds/APS/Vasculitis/AnkySpond etc! Multiple ops, fused right foot and all toes K wired, tendons cut, toes shortened and straightened blah. I'm on biologics, Rituximab, and as soon as I get the nod from my consultant after the physical surgery healing (maybe 6 weeks), then I will be having my second lot of infusions. I can't have the infusions now as there is only a 2 month window from having first infusions - that's because surgery (unless emergency) Is not permitted until 4 months after infusions.

Now it's hand surgery time - they have been bad for many years but now losing function of right hand due to fixed 4th finger at 90deg and crossovers.

Anyhoo, I'm due to have major surgery on my right hand (dominant) on 23March - right ring finger PIP joint fusion, probably in 30 or 40 deg of flexion, extensor tendon realignment and soft tissue reconstruction of the middle, ring and little fingers over the dorsal metacarpal heads, and a flexor tenodesis of the right little finger PIP joint.

I'm trying to get everything sorted out now as I know there is going to be plaster time, splint time and 6 months intensive hand therapy... so just wondering if anyone has had similar procedures all at the same time, and how you got on with your recovery. I have been warned of the pain and that my hand will be completely unrecognisable due to swelling; the two hand surgeons who are doing this and the plastic surgeon have made it very clear how complex the surgery will be, hence 2 surgeons.

I will have someone with me for 5 days post-op, after that, I'm pretty much on my own and not too sure how I'm going to be able to do things, though I'm researching this to get tips on how to do manage every day tasks. I'm very used to ops and had 6 ops on both feet, lost count of the number of other ops, but not having a working dominant hand is a very different challenge and my left hand is very weak.

I have a great OT who I'm hoping will be able to home visit and have asked for an IV drip holder so I can keep my arm raised as I know my shoulder will not be able to compensate for the plaster up to my elbow, and will likely flare; I have a biobidet (thankfully) and am considering all the things I know I simply won't be able to do. I'm agoraphobic so don't leave my house except hospital appts or family visits and though I abhor asking for help, I will on this occasion and hope the district nurse and possibly hand therapist will be able to come out as and when it's necessary.

So, if anyone can tell me their story and how they managed, I would very much appreciate it.

Photo attached...'scuse the mud on hand, recently moved house and have had to get some of the garden sorted before surgery. Ha, try putting a glove on with a fixed 4th finger!

Many thanks.

[weathervane]

Hi dragonfly , best wishes for your surgery, i had shoulder surgery a number of years ago and i know how frustrating and difficult being immobilised is , I hope you have help and support at home . Im afraid i cant help you with your questions but i want to ask you about rituximab and surgery as I may have to have disc surgery. How long before your infusion can you have the operation? I have read 4 weeks , is this correct? 🌸🌸

[Dragonfly4 in reply to weathervane]

Hi weathervane

Thank you for your reply.

My understanding, and definitely how my consultant has confirmed in my case, once you have the infusions, you are not able to have surgery for 4 months after the second infusion. i.e. My first infusion was in July 2017 and the second on 8 August 2017... therefore my window of opportunity was from 8 December 2017 to 8 Feb 2018... so I have had to forego my next set of infusions until after my surgery. If I were to have had the infusion Feb 8 and then two weeks later on 23 Feb 2018, I could not have surgery until after 23 June 2018. So my surgery has been brought forward to March 23rd 2018 and I will have the infusions as soon as the consultant believes my wounds have healed sufficiently.

My understanding from talking with my consultant, my next infusions will hopefully be around four to six weeks post surgery, so depending on your situation and healing of your surgery, I would imagine that you would be OK to go ahead with your infusions too with a similar timeline.

My rheum consultant is in contact with my surgeons so I'd recommend, if you can, call your consultants secretary and get confirmation of the timescale post disc surgery.

I'm not medical though so could not say for sure but I can't imagine you will have to wait longer than six weeks post surgery. I think a lot depends on how quickly you heal and how big your surgery is. I do wish you well on your surgery should you need it and hope you have a quick recovery. Best wishes.

[weathervane in reply to Dragonfly4]

Thanks for all the information Dragonfly 😀 it’s quite complicated getting everything co ordinated . I think my surgery ( if i have it ) takes about an hour and should be key hole , I think yours sounds it will take a good bit longer . It would be great to get things over and done with so can get on the road to recovery. Best wishes, hope all goes well for you 🌺

[Dragonfly4 in reply to weathervane]

Thank you so much ... my surgery is between 3-4 hours and there's no guarantee it will work but I have to give it a go to get my hand functioning again. I understand I'll be in plaster to my elbow for 6 weeks and then full hand splint for another 6 weeks and the 6 month hand therapy, which they tell me is pretty excruciating. However, if it works, then that will be good. (Then my left hand!!!!)

My ex husband had 2 sets of disc surgeries and had amazing recoveries ... going from massive pain and unable to walk or sit, then surgery and up and walking within 2 days... miraculous surgery and outcome, but he was otherwise very healthy so was fortunate with quick recoveries.

Any surgery is ugh but if it works, it can be a life changer so I'm wishing you all the very best if you go ahead. Keep us informed if you can.

I also have to say that biologics have been a life SAVER for me and were it not for the good folk on this forum, their knowledge and experiences, I would never even have known about biologics. Definite life saver for me as I had given up all hope of living life.

[weathervane in reply to Dragonfly4]

I totally agree with you about biologics , I wasn’t functioning either as i was in a constant flare and spent alot my week in bed . The rituximab , even though its scary stuff , has been a lifesaver . So pleased to hear your husband had such success, i hope your surgery is just as successful, keep us updated as to how you get on . 💐💐

[Gnarli]

Hi Dragonfly4. I just wanted to say all the very best of luck for your surgery. I've been lucky enough not to need any so far, touch wood. Apart from putting some business the way of one of those food companies which deliver meals and put them in your freezer for you I can't suggest anything to help. Huge hugs

J

[Dragonfly4 in reply to Gnarli]

Thank you Gnarli... it helps just being able to talk about it and knowing someone is listening.

Yep, one of those supermarket food companies delivers everything I need and usually helps to unpack it all for me... I'm registered disabled with them so they are very helpful and I'm intending on filling the freezer. Every little helps!

I'm also hoping that my OT may be able to sort out some help during the day via social services as my mobility is somewhat erratic too when my body is under stress and moreso, mentally under stress. It's kinda scary thinking about how I will shower etc. So far I've come up with putting my shower stool in the bath and using the hand held shower head with my left hand and keeping my right arm outside the glass screen... but with dodgy knees, the safety side of it it does worry me. How to cut up food... no clue at all. May have to live on soup for a couple months.

The OT is coming out to me on the 14th and I'll get everything in place before surgery. I have no qualms at all about surgery... that's just another few cuts to me whilst I'm asleep, but I just am so completely rubbish with pain (a total baby) and at the moment, that is definitely my biggest fear with the amount of surgery happening at one time and knowing how much pain there will be and the swelling in the cast. Mind you, with 6 major ops on both feet and all my other ops, I know this too shall pass... and I do have strong painkillers and oramorph so I hope I can get that under control as quickly as poss. Also, being agoraphobic, even though hospital is a safe place for me, knowing I will have dozens of appointments to attend is the worst feeling... and I haven't worked out yet how I'm actually going to be able to do that.

Thank you again, I'm just glad I can put this out in cyberspace and know there are folk that understand how debilitating it can be at times and having surgery again just adds to the mix of fear of pain and emotions.

[Dragonfly4]

Surgery tomorrow, oh joy! Wanting just to get it over and done with now and get on with life and able to get my next lot of rituximab infusions. Onwards and upwards!