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Heather Mills - Amputee Forum
twint31

How to deal with suction socket and rotator cuff surgery

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Hello to everyone on this board. I am new to this board, but not new to being an amputee. I lost my right limb (AK) over 34 years ago due to trauma of a car accident. While it's been a unique journey presenting many challenges, it has also been educational and insightful for me through the years. I have had quite a few "legs" created over the years, but am now facing the challenge of changing from an exoskeleton to endoskeleton model. I feel I have a good prosthetist to work with--I think my brain is the one who feels challenged with having to learn new movement through space.

While in the process of creating this new limb---and not due to "it", I tripped and fell (hopping is not a good thing to do---think I'd learned that through time, right?) and have torn my right rotator cuff which will require surgery soon to repair the front tendon. This is going to create a new challenge for me as my right arm will be out of motion for 4-6 weeks in a sling and my right leg (using the old one till I can get through this) is an exoskeleton suction socket with a hydraulic pump. My stump is rather long as I am somewhat tall and during the trauma the doctor was able to save most of the top of the thigh. So I wrap it with an ace bandage and pull it down through a hole on the bottom left part of the upper socket. This creates the vacuum and then I "seal" it with a screw in valve, that has a button to release air, should some get into the socket when sitting, etc.

Has anyone else faced this prospective situation? Please enlighten me if you can. I have many concerns about how I will be able to function (dress, eat, use the restroom, bathe, etc.), but my biggest concern is going to be how I get that suction socket on and off without the use of my right arm. My husband tried helping me release the suction last night, but we were unsuccessful (normally I remove the valve and use my right hand to release some tissue from the back and then kind of "wiggle out of the socket"). I don't want to lose mobility or muscle usage after the surgery takes place, nor do I like losing my independence. Looking forward to hearing from any and all--even if it is only to point me in a direction.


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Hi Twint,

sorry it's taken this long to get back to you - I've been recovering from shoulder surgery and haven't been able to do much! I've been away from this forum for a while because of it and have only just seen your post.

I thought mine was rotator cuff as well, but it was a completely messed up joint, the result of years of arthritis. I 'learnt' to walk on my new legs last year and in the process, put too much strain on my shoulders by relying on crutches too much and by using parallel bars rather over-enthusiastically! Anyway, now my left shoulder (the replacement) has limited movement and is still very weak and my right shoulder is still agony (original joint).

The recovery itself was fine barring one thing - managing daily tasks such as putting my leg on. I don't know if you are in the UK or not, but in the UK we have six weeks of home assistance post operatively if we need it. After six weeks you have to fund it straight from your own pocket (rather than via the taxes we pay to the NHS).Once I got home, the system we have here proved to be unsuitable for people with multiple disabilities. The agency employed to give me home care simply couldn't understand how disabled the op had left me and the whole recovery became a nightmare of washing, dressing and personal care with people who didn't have a clue. It was so humiliating I have now decided that I can't go through it again at home and will wait to have my other shoulder done until I can afford a place in a rehab unit. (As we don't have insurance for our health care here we have to find the full price for anything outside of the NHS cover unless we have opted into an insurance scheme - something which disabled people find impossible to be accepted for).

I hope you managed your post-op well and that you are now able to put your leg on unaided. I also asked on the forum if anyone had any tips, but like yourself found it's obviously something that few of us have had to try and cope with (thank god!). I would really like to hear how you got on, so please post here when your rotator cuff repair allows you to! (any advice at this late point would be a waste of time, but my only advice would have been to sort out MAJOR home help before the operation...sorry, no use at all).

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Hi Kate, how's the shoulder replacement going? I've had both rotator cuffs repaired and now they both need work again. The right one is set for repair and bone spur removal in mid-November and I'm holding off on the left one as long as I can. They had suggested shoulder replacement for me but when I asked if I could use crutches after the answer was no. Seems there is a 25 lb. limit for the replacement. Have you had any conversations about this?

It seems like everyone in health care specialities treat only their specialty and have no concern or maybe knowledge about how their work affects other issues you may have. Sorta like "I fixed the broken rib after drilling a hole through the heart to get to the rib. The patient didn't survive but that rib is perfect now."

At least that is what I get. They have tunnel vision and if you don't think ahead and explain to them how you live your life, they can't use their experience to guide you. You really have to do lots of research and thinking before you have any procedure done to see how that will affect the rest of your body and the way you use it.

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Hi Capt. , I'm glad to hear the surgery's gone well! Yes, that maximum weight thing about shoulder joints was also a long conversation for me...more importantly (or as importantly) is the limited movement - I have only now been told I shan't be able to get my arm above 90 degrees. This means doing my own hair etc. is still beyond me and is actually making me rethink having the other shoulder done as I really don't want to end up needing more help than I already do.As for crutches, I use mine for balance more than anything and now just pray if I stumble I won't dislocate the new joint because of the crutch.

Isn't it frustrating that surgeons can't think about anything beyond their own speciality! I am also tired of having to tell every new person I see my 'back story' when they have all my notes right in front of them...We unfortunately have to stay one step ahead of the health professionals and lead any discussion rather than just accepting their expertise as fact (does that make any sense?). If I don't keep sharp, something gets forgotten or ignored or neglected as I am the only person who knows what the longterm implications can be. Sometimes when a doctor is telling me something will be good for me I know on a whole other level it absolutely won't be! Doctors usually respect that - but carers often don't.

Good luck with your next surgery!

p.s. love the rib/heart analogy.

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Hi Kate, Capt & Twin,

I've been thinking about you all and the challenges added to your situation being amps. I'm am curious to hear how you have all been doing respectively.

I managed to meet the ground unexpectedly while learning to walk with a new leg back in 2010. I chicken out walking with using the leg and opted for my wheelchair. I am scheduled for a MRI this upcoming Monday to see what whether the earlier fix is no longer fixed. I want to know but the possibility of needing another surgery is not a cheery thought to say the least!

Jane

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