Amputation Left Above-Knee Amputation, 22 April 2025

[sistersinhim]

It's great to hear from you. How are those phantom pains doing now?

 

[WFD]

I’ve gotten my PICC line out, and in about ten days will get the sutures out from my TMR. Because they are on the back of my thigh I sit on them and they are uncomfortable.

The phantom limb pain however, is awful. It is worse than my other two or three worse surgeries combined. Oxycodone and Gabapentin barely touch it.

I’ve signed up for a clinical study that will study the use of trans-cranial DC stimulation to address PLP. Here’s hoping I get in the study group and not the control group.

About the only other thing I can do is something called mirror therapy, that fools the brain into thinking it still has two legs and (very temporarily) relieves the pain.

 

[Layla]

Good Evening WFD,
I am sorry that the relief of losing the PICC line is overshadowed by the phantom limb pain.
The pain sounds relentless and that's heartbreaking to even imagine. It's unbelievable medical science hasn't made better advancements for the dealing with this type of pain.

We care about you, WFD, and you're always welcome here to share, or even vent if you feel the need. You've been through so much and seem to be handling it like a champ. I hope you're able to get into the group you signed up for and that the mirror therapy helps bring some relief if you decide to explore that.
Until next time...take good care.
@WFD

 

[otto21]

Ugh I’m so sorry to hear this and really had not even heard of it before. I hope something will help!

 

[Jamie]

I’m very sorry that phantom pain is so relentless. If you can stay out of the control group, that therapy seems like it might have some positive possibilities. Have the doctors given you any idea how long the intense phantom pains will last? I suppose it’s like everything else and their comment would be “It depends….”. I doubt anyone can predict that type of thing. Do things like ice or heat have any effect?

At least you can look forward to having the stitches out. That may help a little. That mirror therapy is interesting, though. It seems crazy to think something like that would work on pain. I’m glad it gives you a little relief.

We’re always here for you. I look forward to your updates and hope that soon they will take a positive turn!

 

[Legseleven]

I am so sorry to read this, I can’t imagine how truly awful this must be. Thinking of you. I hope the trial goes well.

 

[sistersinhim]

I pray for your relief. I can not imagine what you are going through, and my heart goes out to you.

 

[Pumpkin]

WFD,
Sorry to hear about the phantom pain. Mirror therapy is very successful, they should be able to train you so you can use it at home if it helps.
Have they introduced you too any fellow amputees? They know what helps and what docen't from first hand experience. If not ask about amputee volunteers that will meet with you.

I hope you find some relief.

 

[WFD]

Have the doctors given you any idea how long the intense phantom pains will last

The durations quoted are usually in the three to six months range, and I’m almost two months in. Four more months would be a long time to bear this.

10 to 15% of patients suffer phantom limb pain forever, and that just doesn’t bear thinking about.

Another month or so and I should get a prosthetic leg. Phantom limb pain is said to decrease when you start wearing a prosthetic limb, so that is something to look forward to. Plus, once I get a prosthesis, I can start doing stuff.

Mirror therapy is pretty straightforward and you can find instructions online so I’m already running with that.

If none of these approaches work, there is evidence that very low dose naltrexone offers relief, so I will pursue that if necessary.

As far as checking with other amputees, it is clear that individual responses are all over the map. Some never get PLP, some can’t get rid of it, for some mirror therapy is great, for others it doesn’t work at all, etc. it’s pretty clear that PLP has multiple causes, possibly interlinked.

Thanks all, for your concern.

 

[Jamie]

What you describe sounds like trying to connect with amputee groups might be more frustrating than just trying to cope with what your body is giving you. But I suppose it could be worth a try….especially once you get your prosthesis. That will be a monumental day for sure!

I read about some of those other treatments you described and it’s good there are options. As I’m sure you know, anything to do with nerves is a very slow process. There are certainly plenty of positives to think about and try for now. I hope the time passes quickly for you until you receive the prosthesis. I know that cannot come soon enough for you.

 

[Jockette]

I’m sorry for all you’re going through. One of our retired staff members, @Celle (you might remember her) had a son who had an above knee amputation. She occasionally commented on the difficulties he faced.

 

[WFD]

@Jockette , I do remember @Celle ‘s comments. IIRC, she was quite negative about amputation as an option.

As far as talking to other amputees, my prosthetist is an amputee and is quite successful. In addition to working full time, he has a small farm he operates, all on a prosthetic leg. There are also a few discussion forums.

 

[Jamie]

This sounds good. You’ll be able to see firsthand how this can work for a person. I’m so hoping this is how it works for you. I know you’re just in the early days now, so I imagine it will take some time for everything to work itself out to a routine for you. I appreciate all that you share here.

 

[Layla]

Hi WFD,
It is impressive to know that your prosthetist is walking the same path as you, literally. I'll bet his progress is inspiring, especially if your journey is feeling like an uphill battle currently. I hope you're able to get the PLP under control soon and began thriving as I know you will. Your resilience is something to be proud of even on the hard days. Wishing you a good day!
@WFD

 

[Layla]

Good Morning!
Stopping by to say Hi and offer best wishes for a good week.
@WFD

 

[WFD]

Thanks, @Layla.

I had my sutures removed yesterday from the TMR incision, which is great, as they ran down the back of my thigh and so I was always sitting or lying on them. I also have the all-clear to start exercising again.

Today I also get started on the clinical trial, which will be interesting and hopefully helpful.

Today or tomorrow I will be contacting the prosthetist to see if we can schedule the process of sourcing and fitting a prosthetic leg. Really really looking forward to getting out of this wheelchair and off the crutches.

 

[Layla]

Thankfully the sutures are gone allowing you more comfort. Exercising again should feel like a positive step forward. I really admire your optimism, WFD. Your positivity as you adjust to all is honestly inspiring.
As for the clinical trial, I hope everything goes smoothly as you participate in something that may help not only you, but also those following behind you. Fingers crossed you're able to abandon the wheelchair soon. Thanks for sharing an update. Just want to say I care and I'm rooting for you!
@WFD

 

[EalingGran]

Great report @WFD. Good luck! Hope all goes well sorting out your prosthesis.

 

[Jamie]

This is all wonderful, steady progress. It’s so good to hear. I know you’ll be more comfortable without those stitches and that’s huge. My husband was in a clinical trial and it is an interesting experience. Here’s hoping you end up in the actual test group.

Do you have any idea how long it takes to get the prosthesis once you meet with the experts and are fitted for it? It will be interesting to hear about how it’s created for you and how it actually works to give you mobility. The technology these days is so amazing and only getting better all the time.

 

[WFD]

Here’s hoping you end up in the actual test group.

I am in the actual test group.

Do you have any idea how long it takes to get the prosthesis once you meet with the experts and are fitted for it?

Between a few weeks and a month, I hear