Soon to be amputee

[surfsmiles]

Hello all, my name is Tat and I am a soon to be a below knee amputee. I don't want to explain my story for the thousandth time I'm sure you all understand, anyway the short and sweet version is: hit by car, broke leg> five surgeries in two years> many infections> not healing, no more options time to move on.

Here's a little about me:
18 years old
I live in Hawaii on the island of Kauai
Graduating high school in a few months
Normally very active I play football, soccer and I surf, hike and free dive

So anyway, after two years of an unsuccessful attempt to leg salvage I will be getting a below knee amputation in the next few weeks. The doctor prescribes I should speak with some amputees so that I might learn on a more relatable level. Looking forward to hearing from you guys, could really use the help from anyone who knows what it's really going to be like. Also looking forward to possibly being part of the amputee proboards community.

Thanks all, much Aloha, Tat

[stonecutter]

Hiya Tat,

I was 19 when I was working in a pulp mill and managed to get my leg mangled in a chain conveyor. I was working the summer and saving money for College. I underwent several surgeries to save my foot, and had really bad infections too. So your story really resonates with me.

I can't say amputation won't change your life. I can say that you will still have one!

I still do everything I used to do - I used to hunt / fish / quad / boat / hang out with friends / etc . . . I still do that.

I never surfed in my life and wasn't a big swimmer. I did get back into ball hockey for a while but the foot I had/have doesn't really accommodate running. That being said - there are feet that do, and if you're an athletic type - there are legs and feet available.

If you have specific questions please feel free...

Gotta say - kind of jealous of where you live. I've only ever been to Oahu for a weekend, but one day I hope to see more of those islands.

[surfsmiles]

Hey stonecutter, thank you so much for the reply, it was extremely encouraging and a relief hah.. I've never used a forum so had no idea if anyone would even read this. I'm so new to all of this so I do suppose I have a few specific questions. I do realize that this is going to change my life but I really can't fully realize to what extent till I've had the amputation, and this puts a pit in my stomach.

So here are a few things I'm curious about :

1. Phantom pain is a big one, I have read that it is different case to case, but I don't know how extreme it could be. For example does it immobilize for hours or is it more like a punch to the face you just have to shake off? I'm pretty scared to feel it, I have a high tolerance for pain now but mentally, being in pain constantly is wearing on me.

2. The doctors are calling this an elective surgery because yes, I could sit on my bum and endure a couple more years of surgery to possibly fix my leg. I understand and accept this, it has been long enough and I'm ready to move on. Was your surgery considered elective? I'm just curious to know what it's like dealing with the decision.

3. You say you like to boat? How is it balancing? I'm wondering because my uncle works on a charter boat and offered me a job.

Not sure what else to say, my mind is pretty much racing all the time thinking about the surgery coming up.

When you do come back to the islands definitely visit Kauai, it's the best of the islands! . And you most definitely must try surfing!

Thanks again stonecutter, wish you well

[stonecutter]

Good morning,



Phantom pain, as I understand it comes in a few different forms. When I get mine, it's like an electric shock. Sometimes it's not terribly strong and it comes and goes and days / weeks can pass between pains. Other times, and I honestly haven't figured out when/why/how they are triggered, they are more intense electrical shocks that come on suddenly capture your full attention, last a few seconds, then they disappear. The thing I find weird about it (and other people can comment as to whether or not this is true for them) is that when the sensation stops - it stops completely, rather than other pains like smashing your finger which subsides slowly over minutes. When a phantom pain stops - it's like it was never there. When they are intense, it makes it hard to sleep as they come and go about once every other minute, and each 'attack' (for lack of a better term) lasts about 3-5 seconds. So - just enough to prevent you from getting a good night's sleep.



The best way phantom pains were explained to me was by a nurse when I was still in the hospital. When you are born, your brain is given an unalterable map of the body. When you have something amputated, there's no way for the brain to erase that part from the map and it's trying to figure out what's going on. Phantom pains can also be caused by the way the nerve endings are terminated at the time of the amputation. If they form a ball of nerves in the skin it can be very sensitive and you'll always need to manage that spot with the person who builds your prosthesis. I had a revision surgery in 2012 that resolved that problem, though.



There's a theory that I found interesting that phantom pain attacks can be influenced by the weather and barometric pressure. I would think that living in a warm/cold climate like here in Northern Canada I would have more attacks than not, though so I wonder about this.



Some people take medication for their phantom pains. I never have, so other folks can comment on the particulars of that.



Elective surgery. I find that funny when I hear people saying that they were treated as an elective case. In my case I was losing toes and other parts of flesh rapidly via gangrene as I had a really bad infection after my accident. My plastic surgeon and orthopedic surgeon were in disagreement on whether the limb can be saved. When I turned the conversation to quality of life and they both admitted that I would likely end up losing it to a future infection, I had extensive nerve damage, missing 2/5 toes with the remaining 3 turning black, no sole left on my foot, including heel pad. I would always walk with at minimum one crutch, if not two... I asked if I had a choice in the matter - I did, and I made it and they respected it. I had 6 surgeries in 16 days five trying the save the leg and the sixth solving the problem.



I guess if the surgeon was in YOUR place and their life was the one that was effectively "on hold" while this all gets sorted, I'd imagine they'd forget the word 'elective' when referring to your case. Tummy tucks, eye lifts, boob jobs are elective in my mind. Something like what you are facing is a movement to a better quality of life and a solution to a life long pain.



Boats - I'm in a land-locked province in Canada. My experience on boats are on the lakes and rivers around here. I've been on the ocean in boats after and my balance was kind of wobbly, I usually steady myself on something. But here in lakes in water that's relatively calm - we don't go out in waves greater than 1.5-2'. I get sea sick really easy anyway - always have. But you will get better with balance over time.


Feel free to ask your questions.  I'm usually checking in here once or twice a day.  This is a good forum with a good core of folks.  It gets busy and quiet but that core always seems to come back and chat...

Hope you are having a good day.

[surfsmiles]

Hello again

Thank you for all the input stonecutter, it has been really helping me.

So It is official now, I will be having a BKA next Friday. The anxiety is real. Not sure how I should go about the rest of my week till then hah, my head is swimming.

[stonecutter]

Welcome to the club!

I would bet that the anxiety is real. I was under the influence of a lot of pain medication so although I remember making the decision and signing the consent forms and everything, it's all kind of cloudy in my memory.

Hopefully this will provide you with a way to progress. Please keep us posted.