Surgery scheduled in two days

[cas]

Hi guys,



There is probably an existing topic/thread but I'm new to this site so please forgive me.



Basically, I've been dealing with osteosarcoma of my right proximal tibia since January 2013 and live in Scotland. Since then, I've had seven operations consisting of bone grafts, cementations, steel plates etc.! None of these have been successful and after speaking with my consultant this morning, he's decided that the only option left is to amputate my lower right leg. On Thursday (5th June) this week.

This came as a bit of a shock to be honest as it was only vaguely mentioned at the start of the year and I've had no input into this decision whatsoever. Is this common practice? I'm still trying to get my head around things but is there any advice you can offer? What is the procedure like? Typically how long were you in hospital for? What challenges did you find particularly hard? Seriously, anything right now would be hugely appreciated!

[ann-]

Hi Cas, just read your posting and sorry to hear that you need to have your lower leg amputated this week, which I imagine is quite a shock to hear and to get your head around in just a few days.

I think you will probably find that every hospital, or every surgeon even have their own ideas on how they go about things and also how long you might be in hospital for will probably vary from person to person. Some people go straight home after surgery, depending again on age, how they are and also their living accommodation, or some get transferred to a rehab ward. Other hospitals have sometimes specialist inpatient rehab units (altho these are quite few now. So generally I would guess, a week to two weeks on the surgery ward. After a revision amp I was in for eight days then went home.

If you are going straight home, try and make everything as easy as you can for those initial few weeks, if you are using a wheelchair perhaps make more room with furniture if you can, and I know in England if you need to have temporary adaptations, like ramps, or borrow other equipment you can borrow this from the Red Cross (website has info on this).
You might also find more information on this website www.limbless-association.org/
or here www.ella-uk.co.uk/ or limblossinformationcentre.com/

After a few weeks recovery you will probably start on the rehab process and prosthetic fitting route, but again its different for everyone. Not too sure how things are done in Scotland but in England rehab takes place usually in what they sometimes call a walking school, usually I think based in a DSC (Disablement Services Centre), which usually houses the prosthetic centre and team. You will probably be given some exercises to do and at some point probably be set up on what they call a pam aide, which is basically a sort of blow up pneumatic prostheses, which just gets you used to the pressures of wearing a prosthesis and allows you to walk up and down the parallel bars, whilst you might be waiting for your prosthesis to be made.

There are all sorts of different types of prostheses, and different components that make them up. Probably, if you are NHS you will receive a basic prosthesis to begin with. The most important part is really the socket and they will cast your residual limb to make this, initially they might check this out by making what they call a check/or diagnostic socket which will be clear plastic to see where you are putting pressure, they will then use this to make the definitive socket, though again sometimes they do things differently and sometimes the cast bit is skipped and they use computer tracing, but again it varies. The socket then gets connected to other components, pylons, Knees (if you are above knee a/k), and feet. That first prosthesis is just to get you started, but they do change what they give you as you progress and in the first year or so you will get used to many socket refits as your residual limb size changes.

The procedure, or surgery itself, is probably not half as bad as you are imagining, there are different theories on anaesthesia to help better short and long term, but talk to your anaesthetist about this, and again the way they do things will vary and at such short notice you might not get too much input on this, but don't get too hung up on this as generally pain-relief etc., today, is pretty good. I imagine at points your patience will be challenged, it can be a bit of a process, especially the prosthetic fitting, and initially there might be what seems a lot of waiting around, but take advantage of this and try and concentrate on your residual limb healing. It might feel like its still there in a lot of ways, so be careful you don't fall on it at this point, as if you over balance your head will think its still there. Once you have a well fitting prosthesis though you will be surprised how quickly you get walking etc.

I know in England most Prosthetic Centres/DSC's will have User Groups, probably Scotland has the same, they often have some peer support on offer, regular meetings, information leaflets etc. You will find details of this at your DSC., maybe the hospital, and sometimes websites. The Limbless Association (LA) also has volunteer visitors who give peer support.

Do hope all goes well for you on Thursday, am sure you will have lots more questions, so let us know how you get on. Hope this info helps a bit. Good luck for Thursday.

[tedatrowercpo]

When I entered prosthetics 33 years ago amputation was the first line treatment for Osteosarcoma, followed by chemotherapy after the surgery. All the limb salvage procedures you describe only came into widespread used in the last 20 years.

[snowyh]

Hi, Cas. Sorry to hear about your unexpected change in course of treatment. I lost my arm & shoulder to "osteogenic sarcoma" > 40 years ago, back when amputation was the primary treatment--no limb salvaging options were available at that time, and chemotherapy was just being introduced. It seems almost cruel that they would spring this on you without making you understand that amputation was a real possibility all along the course of your treatment.

Well, all that's water under the bridge at this point I guess. It's been almost a month since your surgery, so I hope you're able to go online during your recovery and will read this post. Being an arm amp, my recovery would have been quite different from yours... even if I could remember the particulars. As osteosarcoma is generally a young person's disease, I imagine that you are a teen or young adult--am I close? To answer your question, yes this is absolutely common practice if the limb-salvaging treatments (along with chemo & radiation) fail to rid your body of cancer. Amputation is a last resort, but a necessary one to save your life.

Please do let us know how you're doing and if you have any other questions.

Helen