Thursday, 16 February 2012

3 Choices

Today my fellow creatures of the night I am going to be a bit more serious.

As those of you who know me know I am partially disabled with a condition called Charcot-Marie-Tooth Disease. This condition is a neurological condition and has lead, over the course of my life, to my nervous system being destroyed, my muscles wasting and my right foot to become severely deformed.

Well today I went to see a consultant to see what could be done regarding the foot deformity as there is nothing that can be done for the nerves or muscles and I was given 3 choices.

1- Live with what I have and get worse
2- Have a Pantalar Fusion which means my foot will never move again
3- Have either a below-knee or Syme's amputation

1. If I stay with what I have the pain will get worse, as will the deformity, and eventually I won't be able to stand and will need a wheelchair.

2. A pantalar Fusion will mean the removal of the deformed bones and have what is left all fused together, meaning my foot will never move again.

3. The Syme's Amputation: The Symes amputation can be one of the best amputation of the lower extremity.  When it is done right, it creates an excellent end-bearing stump and  allows for a functionally most satisfactory prosthesis.  When is is done badly, the procedure is useless and the patient must be amputated at a higher level.  Problems include posterior migration of the heel pad, skin slough, and a distal flair that leads to a bulky and thus non-cosmetically pleasing prosthesis. 
    The level of the amputation in generally at the distal tibia and fibula 0.6cm proximal to the periphery of the ankle joint and passing through the dome of the ankle centrally.  In the past, the Symes amputation was less used for ischemic limbs because of poor wound healing at this level.  However, newer techniques for determination of tissue perfusion such as Doppler ultrasound measurement of segmental blood pressures, radioactive xenon clearance tests, and transcutaneous oxygen measurements have significantly increased the success rate of the Symes amputation in these limbs.  

4. Below-knee Amputation: This will involve having most of my leg below the knee removed and I will then need a prosthetic to be able to walk


Sessha Batto said...

Those are tough, tough options. If it were me, I'd go with the fusion (you could always opt for amputation at a later date). I'm a big proponent of small steps who has been postponing wrist fusion for the last 15 years, so I can certainly empathize - although really, you are the only one who can decide which option will work best in your life. Whichever you choose, good luck!! I'll be sending positive thoughts your way.

Jean said...

Wow, Julez, I had not idea. I'm sorry your choices aren't better. Not living your life, I couldn't begin to advise you what to do. All I can do is be a friend, listen to you and hold your hand. I'm here sending love.

gemma parkes said...

Medical choices are always so tough and l'm sorry you're having to make this decision.Has the doctor told you what he would do? l realise that there isn't much they can say, as everybody is different and there aren't any guarantees. If it was me l might lean towards amputation and prothetics, or only act when the pain is unbearable enough to stop me moving at all. Make a list of pro's and cons Julez. Sending love.

Lee Ann Sontheimer Murphy said...

Such difficult choices and I offer my compassion and caring. I wouldn't begin to know what to advise - but I will keep you in my thoughts as you make a hard decision. My personal choice would be for the best mobility but I've learned what I want isn't always in sync with others.
I wish you the best outcome possible.

Phoenix Johnson said...

To echo what these other lovelies are saying, I am sending positive vibes your way as you weigh up the choices.
I'd also like to offer my advice, agreeing with Gemma on the Syme's amputation. Many people still lead fulfilling, "normal" lives (what can be defined as normal, really? Differs from person to person) with the loss of a limb. Heck, one of my favourite Australian comedians, Adam Hills, has a prosthetic leg, and he doesn't let it stop him.
Just my thoughts on it, I'd choose the Syme's one, just because it might be less of an adjustment.
Again to echo these other lovelies, only you can choose, it is your life and your foot, and I'm sure you will choose what you feel is best for you. I'm here as a friend, always. <3

2bmechick said...

Oh my dear, What tough choices. I agree with the Syme's amputation. I would if it were me but you don't have to listen to my babble. My heart's with you my dear. No one is ever normal in anything they do, we're all so different with our many quirks that normal isn't normal.

Mwaaah my dear

James Garcia Jr. said...

I am so sorry to hear of all of this, having only recently followed your blog. Those are some very tough choices to choose from. I will remember you in my prayers, and I wish you the very best with your decision.


Kellie Kamryn said...

Really tough decisions, Jules. I liked Sessha's suggestion of small steps, but ultimately the decision is yours. You'll know what to choose when the time is right. Wishing you the best and sending good vibes your way... :)

Tessa said...

Very difficult decisions, and the suggestion of asking the Doctor's recommendation is a good one, often times they do know what has worked for the best before, and as I say about everything, forearmed is forewarned, find out everything you possibly can about all options first. Take your time, the right option for you will speak to you in the end xxx