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Heather Mills - Amputee Forum
alfieatk

Questions to ask surgeon before elective RBK

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Hi Guys and Gals,

After doing a lot of research and suffering a lot of pain over too many years I am very close to taking the plunge and having an elective RBK amputation. I live in England and so I am seeing one orthopedic surgeon and his fellow plastic surgeon on a private consultation. The other one is via the NHS but I asked and been successful in being seen at Selly Oak, Birmingham, as that is where they do far more difficult amputations than anywhere else, as all our injured soliders from Afghanistan and Iraq are taken there. Due to extensive injuries to my bone and skin in my lower leg it will need a really good team to keep my amputation at a below knee level, rather than throug knee.

I just wanted to know what are the most important points I should raise and questions I should ask about how they propose to undertake my amputation. I have a list so far such as; what they will do with the nerve endings? and what steps they suggest to reduce phantom pain? But you know what it is like you often think of the most obvious or important questions once you have left the consultations and it is too late. I have got a few weeks before my appointments so all suggestions welcome.

In short I have had about 25 operations in the last 7 years, leaving me with a very painful and complicated fused ankle for several years now. So I have exhuasted my medical options and with a growing family I don't want to miss my children growing up by hobbeling after them or sitting down all the time. I am aware of the ertl procedure but it appears that it can only be done privately in the US, so I want to try and avoid that issue in this posting.

Alfie

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The one thing I WISH I has done is ask how many amputations my surgeon had done before. I was asked if I wanted my consultant or one from a hospital down the road to do my INITIAL amputation.

I figured "better the devil you know".

Turns out "the bloke down the road" happened to be one of the most widely respected amputation specialists in the country and had he done the initial surgery there's a good chance I wouldn't have needed revision within 3 months (and probably wouldn't have spent 3 months in a hospital bed waiting to be told that the initial amputation wasn't healing).

I've seen a lot of people who've had orthopaedic surgeons do their amputation and have ended up with stumps that are too long leaving them with less choice when it comes to prosthetics.

It seems that there is a culture within the orthopaedic community to view amputation as a failure and therefore the less limb you cut off the less of a failure you are as a surgeon. Vascular surgeons tend to have a different outlook, they tend to see amputation as a way of improving a bad situation and therefore do their best to give the patient the best rehab potential.

That's not to say that all surgeons are the same but if you can get your surgery done once then its better than having to go back for more. Ask as many questions as you can, get as much info as possible, ask your surgeon to tell you all about what your prosthetic limb is likely to be like and how the amputation might affect your day to day life. If they can't answer your questions straight away then the chances are they don't see too many amputees after they've left the ward (that's not to say that you should expect your surgeon to be an expert in prosthetics but if they don't have a good understanding of them then how can they prepare your limb to be suitable?).

Once you've asked these questions, check out the responses you get to see that what they're saying is accurate.

Sorry if this sounds a bit negative, it's not meant to. I just wish somebody had told me this 7 years ago.

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Thanks, very good point to ask them how many amputations they have done. Simple but very effective way to work out how much experience they have.

I have seen a few surgeons now and well regarded prosthetists and they all say I do not have the luxury of choosing the lenght of my stump, I am looking at very near the minimum level (about a hand and half's width) before they would do a through knee.

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I am looking at very near the minimum level (about a hand and half's width) before they would do a through knee.

But have they told you that if they do a through knee you'll be somewhat limited when it comes to prosthetic component choice? My initial amp was through knee and if tit had stayed that way I wouldn't be able to have a rotator (a device which allows me to sit cross legged and do handy things like easily change my shoes or trousers without removing my leg) nor would I have been able to use a C-Leg due to the fact that there wouldn't have been enough space between the bottom of my socket and the top of the lowest profile foot you can use with that knee. If you end up with a through knee the theory is that you can weigh bear on the end of your stump which is all well and good but I seriously doubt that is much of an advantage when the price is a lack of choice in components and living with your knees being several inches out of alignment (Picture sitting down with your knees bent and one thigh appearing to be 3 inches longer than the other and one foot swinging 3 inches of the floor.

I know there are plenty of people out there with through knee amputations and I mean no disrespect to them I'm just very glad that my through knee is now an above knee for the reasons above, call it a personal preference and something worth thinking about.

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You should have a minimum of 4 inches of stump below knee to properly support a prosthesis. The nerves should be allowed to retreat into the sheath that protects them. That is to alleviate neuromas forming down the road. The fibula should be cut slightly shorter than the tibia. The closer you get to the knee, the harder it is to do this.

We had a UK member here who had an ERTL procedure done in the UK. She had to wait quite some time for the surgery, but it was performed somewhere in the UK. Her name is Roz. You might be able to search for her posts leading up to and including the amputation. I don't think she posts much anymore.

It is true that a thru knee amputation can limit what prosthetics you use. The fact that you can bear weight on the end of the stump can be a good thing. I know some TKs who wouldn't change, but I know some who wish it were shorter. I even know a couple who opted later to have a revision to a shorter stump. Everyone is different.

It's good that you are doing your homework now. Good luck. Keep us informed on how you get along.

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Thanks again for the advice. I was wondering what they did about the nerves.

I will do a search for Roz and pm her if I can find her, I have PM a few previous people on here and they have been very good about coming back to me.

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