I have two options

[jag01]

And they both suck. Last summer I shattered my leg. Yesterday I met with an orthopaedic surgeon. He said I have two options A) an ankle fusion, they make the joint immobile, and hopefully, but no guarantees, I would be pain free. Or B) a below the knee amputation. My mobility would be better with option B, as prosthetics have come a long way.
I can’t believe that these are my choices. I can’t wrap my head around it. I can’t talk to anyone IRL about it, as I can’t talk about it right now. Does anyone know someone that has had either of these procedures, that could offer some insight? Any ideas for alternative medicine?

[gastro]

I’m so sorry. First, I would get a second opinion.
I would start doing as much research as possible.
I’m sorry you are having to deal with this.
With my limited knowledge is it able to go the route of ankle fusion and then if that doesn’t work out proceed with amputation?

[lexus]

Jan 19, 2018 0:06:03 GMT -5 gastro said:

I’m so sorry. First, I would get a second opinion.
I would start doing as much research as possible.
I’m sorry you are having to deal with this.
With my limited knowledge is it able to go the route of ankle fusion and then if that doesn’t work out proceed with amputation?

This! I’m really sorry that you have such awful choices.

[dizzycooks]

Omg I can’t even imagine. I like gastro’s idea. I’d also suggest you find a counselor or a support group. That is a ton to process.

[momin2013]

I'm so, so sorry you're in this situation. This sucks big time.

You absolutely, 100% need a second opinion. Is this a surgeon in a large metropolitan city you met with? If this was in any way a "smaller city", the surgeon may very well have limited resources available to them, which could impact their course of treatment suggestions.

Please, please see someone else. Get out the yellow pages and start making calls if you have to, but maybe start with your PCP and ask them to recommend you to someone else.

[jag01]

The surgeon I saw was my second opinion. He is “The Guy” according to my first surgeon. I spoke with my Sports medicine Dr, and she said that going to another surgeon, I’ll most likely be told the same thing. They have a scope of what they do, and don’t seek alternative ideas, just how can it be fixed with surgery. My sports medicine Dr would like to try stem cells first.
When I told DH, he was in disbelief, and we haven’t spoke since. I can’t talk about it, like say the words, right now. Thank you ladies for being so supportive, as the people in my real life don’t know.

[expectantsteelerfan]

I'm so sorry that those are your choices. Thinking of you.

[momin2013]

Ok, jag, for me, amputation would be off the table because, well, I just couldn't.

So in your shoes, I would be all for anything that avoids that option. Stem cells? Go for it - if that's an option I'd say it's worth a try. Did they talk at all about trying screws or anything, prior to having to just fuse it?

[jag01]

I have 2 plates, and 15 screws in it right now. I want them out because I believe a lot of the pain comes from irritation from the hardware. I told the surgeon that I’m confident that having it removed will help, he said he’s confident that it won’t help as there is too much cartilage damage, and the arthritis. I’m not making and decisions right now, until I’ve turned over every stone.
I also thought that amputation was off the table, but he told me the quality of life is better, because I’ll be able to run, ski, swim, ect. stuff you can’t do with a fusion. I’m grieving all the things I cannot do anymore, running and playing with my kids, swimming with them. Just sucks.

[momin2013]

Jesus, jag, I'm just so sorry.

I wonder if there's anywhere else you could have this done that might offer you some better options? Maybe even in the U.S.? There's GOT to be something...

[momin2013]

In looking up rankings for the best orthopaedic surgeons in Canada, they mostly seem to be in the Toronto area. I wonder if you'd be able to get in to see one of them; it seems like yours really is a special case and would warrant being seen by the best in the country.

I know you've said you've gotten a second opinion, but maybe a third is in order. I just can't believe that amputation is really on the table as an option; someone's GOT to be able to do better.

[CrazyLucky]

I would try the fusion first and then amputation. My mom has both of her legs amputated below the knee, and it has completely changed her. I attribute this as much to her as to her procedures.
But I know a nine year old who has two prosthetics and he is simply amazing. He runs, skates, plays soccer. I mean seriously, this kid is an inspiration. If you do end up getting the amputation, I think it'll be a huge mindfuck, so please seriously consider getting counseling at the same time.
I'm sorry you have to make this choice.

[nicolewi]

Oh, wow, I'm so sorry. Here I thought this post would be about a couch to order, or something like that. This is just so far beyond that type of thing that it's on another planet. What an impossible choice.

I think I would first do as PP suggested and see if you can get in touch both with people who have had a fusion, and people who have had amputation, and see what they say. I feel like I would 100% need that information before I could try to guess what might be better for me. I'm almost leaning towards amputation with no info, but then....man, that's hard to actually think about. To make that choice is so hard, even if it may be the best choice. I mean, it does seem like you may be able to be more active actually with a prosthesis than with a fused ankle.

What is the stem cell option? Seems like that might be worth giving a shot first before having to make a drastic choice.

I'm so sorry.

[mamaalysson]

Jag, I’m so sorry. What horrible choices. I can’t offer additional advice to the wonderful advice that’s been given, and I agree with all of it, just putting in my thoughts and love. Thinking of you!

[hocus2]

I think more research is needed but if an amputation below the know truly offers more freedom after you adjust then it is something to consider. I also agree with PPs that trying the fusion and/or stem cells first might be the better option unless it some how would prevent or complicate an amputation later. I'd reach out to folks who specialize in non-surgical solutions. Not that surgery is bad but doctor's who specialize in that tend to see things through a narrow lens.

I would also consider talking to psychologist or support group in general. Your life is changing in a lot of ways, grief and anger are normal. Having someone to help you regardless of your decision will be critical.

FWIW I googled and it appears the transition to a prosthetic is very long but usually successful. While you probably would be able to do a lot it seems like there are usually several months of physical therapy work needed which also needs to be sorted out.

[erbear]

Jan 19, 2018 13:09:55 GMT -5 @mama2b said:

Amputation should not be off the table if it was recommended by multiple specialists. Many people resume active lives after having one, your life would continue on, with some adjustments that you would grow accustomed to doing.

I worked in a rehab hospital for years and saw tons of amputees come thru our doors of all ages, many would have passed undetected.

I'm kind of here. Amputation is a difficult choice and I'd explore every option out there to avoid it. But I don't think it's a death sentence. It would take some getting used to. But prosthetics have come a long way and quality of life (which sounds more "guaranteed"), being able to do the things you love, and being pain free is really important. 

Good luck with your decision!

[abs]

Wow I am so sorry. You are right—both options suck. For me I am so active that I would choose which ever option let me retain my current quality of life. So much to think about! I hope you feel supported at home with this decision and you are supported here, too. Hugs!

[penguingrrl]

Wow, I’m so sorry to hear you’re going through this. There definitely isn’t an easy option all!

I would seek a specialist associated with a major research university before making a final decision if you aren’t using one already. They’re often very up to date on the latest research and methods and may have a better option for you. For some things it can be really helpful to work with researchers as opposed to practitioners. They see things differently (neither is better or worse, for a torn ACL I wouldn’t want a researcher versus a specialist who repairs ACLs all day).I would also seek a support group to talk to people who have faced similar injuries and see how they have processed all of it since it’s a lot to process.

Sending hugs and good vibes!

[cabbagecabbage]

That’s really rough. I come at this from a different perspective and my own biases as I had surgeries to fuse different bones (in my hips) and they are in imperfect positions and cause me lots of discomfort. I’d be considering both options.

Can you speak with patients who’ve chosen either surgery, maybe through injury specific message boards or ask the doctor? I’d want to know about healing, long term ability to be active, costs of prosthetics and therapies associated with each choice, and probably a ton of other things.

I’m sorry the options suck so very much.

[imojoebunny]

I am sorry you are faced with these really crappy options. I have a friend whose son had Rotationplasty last year, if that is an option for you, it might give you better mobility than straight up amputation. One of my childhood friends had his leg amputated just below the knee and he skis, hikes, runs, and generally does much more than most standard issue people I know. My friend's son is doing very well and learning to do most of the same things he did before. He is working on riding a bike now. It is a tough decision. Neither person I know had an option at all, but in some cases, removing the painful part can be the better option, rather than continuing to live in chronic pain or have very limited use of the limb.

[court26]

Well, that just sucks all around! I agree with others that they should be able to put you in touch with people who have had the different procedures to help you make the decision. I know my dad had a procedure done outside of the US and they had a list of people for him to call when he was making his decisions. He felt so much more confident. A prosthetic seems so so so scary, but with your pain, that idea of ending that has to be overwhelming to consider.

[cjcouple]

I am so sorry, I think you have some good advice here. I can only offer big hugs and prayers.

(((Hugs)))

[jag01]

I’m not doing anything for now. I am just going to breathe and take a break. Get my head in a good spot and then blow up the internet, research all my options. I know that nerves take years to heal so I’m just going to give time. The research that I have done so far shows that I am on the right track with what we have tried so far with the PRP injections. Thank you all for your words of encouragement, it means a lot.