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Heather Mills - Amputee Forum

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Hi All...I will be 4 weeks post op on Tuesday. I am having phantom pain...it's tolerable but very annoying. I get weird sensations....difficult to describe anyways I feel this most of my day. Is it going to get better? Ugh! If it wasn't for these weird feelings I would feel great! I am kinda scared...6 weeks they say one can get fitted...this my Dr will be telling me by looking at my x-rays but I am scared to start putting weight as my limb is already sore. I was told to start scale exercises at 4 weeks....eeck! Putting some weight scares me! Is it really that bad?

Mary

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I didn't get a leg for almost 10 months due to problems not being able to use my remaining leg. All I remember was the wonderful feeling of standing up! It was incredible.

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Actually, Mary, being able to start using the leg, and being able to be fitted for a prosthesis, is likely to help with any pain you've been experiencing. There's never a "complete guarantee," but often activity and compression can be a good thing.

I recall my first prosthesis fitting as being "uncomfortable" at first, but not painful. The discomfort was due to the fact that my check socket needed a lot of adjusting, as did the other leg components...the difference between my first fitting session and my second fitting, only two days later, was incredible!

And, like Marcia, my overwhelming memory is of the joy of being able to walk again!

Good luck to you...I hope the pain will start tosubside soon.

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Hi All...I will be 4 weeks post op on Tuesday. I am having phantom pain...it's tolerable but very annoying. I get weird sensations....difficult to describe anyways I feel this most of my day. Is it going to get better? Ugh! If it wasn't for these weird feelings I would feel great! I am kinda scared...6 weeks they say one can get fitted...this my Dr will be telling me by looking at my x-rays but I am scared to start putting weight as my limb is already sore. I was told to start scale exercises at 4 weeks....eeck! Putting some weight scares me! Is it really that bad?

Mary

If you think you have just probably had the biggest cut ever, across skin, muscles, bones and nerves ... it is going to hurt and it will take a time to heal and as you say you will get some weird sensations, but I found that gradually things just got less and less painful, though you are probably always going to experience weird..ish sensations. But personally I think if you focus on the pain issue too much you are likely to find that its worse, so don't worry too much, keep happy and think about other things.

For me, both times after original ops., and revision, getting prosthetics fitted was kind of exciting but like you say a bit scarey too, but usually everything is done in small stages, and you gradually build up the tolerance of wearing a prosthetic and walking, so the first time you might walk up and down in the bars a couple of times, then the next double that, etc. etc., at first you won't prob be taking full weight through your leg, they prob do things differently depending on where you go, a lot depends on the fit on the prosthesis, so possibly they will spend quite a bit of time on that before they get it exactly right, but walkingwise you might start with crutches, then maybe two sticks, then one, then none, it all is very individual and gradual but once you get started it is surprising how quickly you progress and like Marcia says, that first time you stand up and take those first few steps is quite something.

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My phantom pain/sensations are not as tolerable anymore. By night I am in tears. The Lyrica is not working. So I take this med they gave me when I first got home...it's like morphine. I have to take it to get some relief. I don't want to because it is such a strong med. Then in the morning I am so groggy I

can't get out of bed.I do sleep a lot right now. Listening to my body...needs to heal.

I have been putting a bit of weight on my limb. Only by putting a pillow on a chair, then I put my limb on it putting some weight. Not long after the phantom pain starts. Hope it will ease up soon. Others who have had the Ertl say they went through the same pain. It got better they say, and now no pain.

I am going to take it step by step....trying to adjust to this new limb. Hating the sensitivity of it and the weird sensations too...so freaky. Right now I don't like my limb too much and trying to get use to it. I want to like it.

Mary

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Mary, you are doing the right thing and have every right to have a cautious attitude. If you remember, I had the AK ERTL and started with the pillow like you are. Mine was in October and I still have what is called regional complex pain, but the strange Phantom Pains I had have all but gone away.

Keep your chin up. We had a lot of cuts to tissue, muscle, nerves and bone. I was very stubborn in regards to healing. Take my advice and know that this will take time and there is nothing that will change that.

KB

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Hi Everyone.

I am new here but I thought I might add a note to this post.

Mary, I really feel for you. My surgeries were pretty recent and I have not so fond memories of dreaded phantom pain.

I did find when the pain got really bad that if I squeezed the pressure point in the web of my hand between my thumb and (index?) finger really hard the pain would lessen.

I think it has something to do with taking the focus off the phantoms. During the night it was really hard and I only really found that if I was absolutely exhausted I got any sleep at all.

I hope that you are feeling better soon and the dreaded phantoms decrease very shortly. It is such an annoying sensation and I used to actually get quite cranky with myself if I gave in to it. (how can something be painful if it is not there????, go away horrible pain!!) I am sure you will be up and around soon and these days will be behind you.

Take care and look after yourself

Loz

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Mary, are you wearing a shrinker sock?

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Yes I know it will take time to heal. I did see the surgery on DVD and can see why it would be so painful. My meds are getting me through.

Marcia...yes I wear a shrinker and just today was told to use a bandage to wrap my limb. I usually do my exercises then put on the shrinker. Dr Ertl doesn't like the shrinker but I have decided to use it anyways.

Mary

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Mary I am sorry U ~ R having phantom pain...I have been very lucky in that area. I do have them off & on...I massage the end of my leg until it stops & always wear a shrinker sock{of course it is not tight now} but just feels better to me to wear it. Keep taking those baby steps :happy:

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I am 9 weeks post op tomorrow. I find the phantoms are decreasing....a good thing! I am still waiting to be fitted. My prosthetist just had to go on vacation now. Ugh! I hope within 2 weeks I will see someone.

I am not able to put much weight at this point. I do the scale exercises each day and can only bear 8-9 lbs. I guess as it heals I will be able to bear more weight. Little steps.....

Mary

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I'm glad the phantoms are starting to decrease, Mary...that's a very good sign! And I hope you can start on getting fitted soon.

Now, simply because I'm curious and, as a "regular" trans-tibial amp, have never been encouraged to bear weight on the end of my stump, what do "scale exercises" for an ERTL consist of? I'd really like to know!

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Hi Cheryl,

At approximately 4 weeks post amputation with the Ertl I was instructed to start towel and scale exercises. With the towel pull...you take a towel and place the towel around the end of your residual limb, as tolerated and hold for 5 to 10 seconds.

Scale exercises is...you place the scale where you can comfortably get the end of your residual limb on the scale and you put pressure. Start with 5-10 pounds. I should be increasing 2-3 pounds per week. Eeeck!

I also do the flexing exercises and massaging my limb...which is important (desensitizing)

The phantoms has started up a bit more because I am doing more of the scale exercises. I hope to be fitted soon. Waiting on my prosthetist to get back or might go to rehab....not sure yet?

Mary

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