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Post by gwenmarie on Sept 1, 2014 15:45:21 GMT -7
Hi,
I am a neuroscientist with a small company presently building a prototype of a non-invasive device for treating phantom limb pain. We would like very much to talk with people with trans-radial amputations. Our aim is to gauge interest in such a device. Phone conversations or email would be better than discussing over a message board since we are trying to protect the idea as we develop it. Please let me know if you are interested and how you'd like to be in touch- to ask you all I'd like over the phone might take twenty minutes and would be undoubtably very helpful. Thank you!
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Post by snowyh on Sept 2, 2014 3:22:38 GMT -7
I'm not a trans-radial amputee, but if you've come up with a non-invasive, non-pharmaceutical way to treat phantom pain I'm sure it'll be a big hit! If you could adapt the device to other levels of amputation, you'll become a legend in the amputee community.
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Post by stonecutter on Sept 2, 2014 14:52:37 GMT -7
Below the knee here...
After having many sleepless nights because phantom pains keep me awake - this past Saturday being one I'd like to echo what snowyh had to say... you'd be a legend - no.. no... a ROCKSTAR on par with Led Zeppelin or dare I say even the Beatles in the amputee world.
So... get your rock on, Gwenmarie!
\m/_ _\m/
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Deleted
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Post by Deleted on Nov 2, 2014 12:43:52 GMT -7
The pain overshadoepws everything, ruins all.
I would be glad to help. if I can.
My research is that congenitals have little, if any. Those with planned amputations, such as from disease, etc, have some but less because the stump is made my the surgeon, but:
People like me who have sudden traumatic amputations get really nailed. Bad, bad and all the time.
My arm was crushed off about 4 imches from the shoulder. Please let me help you with this important project!
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Post by Ann on Nov 3, 2014 1:15:38 GMT -7
Am a leg amp., not trans radial, my orignal bilateral leg amp surgery was due to trauma and I have had two revision amps since. I can't say I have been unduly bothered by phantom pain, though in the early days this was never explained to me and I was completely unaware of it for many years, though obviously experienced it from time to time find it usually related to poorly fitting prosthetics, sometimes stress, particularly stress about the legs.
I know the electric shock type zappers are also usually thought of as phantom pain, though for me these are directly in the stump itself and if I watch the stump while these are firing and you can see it jolt, and it doesn't actually create pain in the non existent feet, so to me its more stump pain than phantom pain, if that makes sense.
Phantom sensations on the other hand are present all the time, but not usually painful.
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Deleted
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Post by Deleted on Nov 5, 2014 10:26:56 GMT -7
Ann,
You make a very good point, and one that I hadn't seen clearly before; that I have been mislabeling my pain as phantom pain when it is really a form of stump pain.
What is more important is that I may have been misleading my medical professionals by my constant complaint of phantom pain when that isn't what it is.
This new clarity has lead me to initiate a complete series of medical tests to see just what is really happening, something which my should have done already, rather than just medicating me and telling me to conquer the pain mentally.
Your focus has been helpful.
Thank
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Post by Ann on Nov 6, 2014 10:18:15 GMT -7
Didn't mean to imply that you had been "mislabeling" your pain Jill, phantom pain often means different things to different people, so might be interpreted differently by different people. For me phantom would be feeling pain in the non existent bit of the limb, but if I felt pain in the actual residual limb that wouldn't be, though this could and has sometimes triggered phantom limb pain. So really only you know where you are feeling the pain, whatever you choose to call it probably doesn't matter as long as you are able to explain to your medical professionals where you are feeling it then hopefully they will be able to help you.
I do though think the term 'phantom' is itself very misleading though because it implies that it is something you might be imagining, when your not, because it is usually very real pain, something, in my experience you are definitely not imagining, so maybe more needs to be thought about where it originates from and why.
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Deleted
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Post by Deleted on Nov 6, 2014 11:03:57 GMT -7
What i meant was that you had sharpened my focus and that will help me deal with it.
I really deeply appeciate your time in helping me here.
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james
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Post by james on Mar 19, 2017 16:45:01 GMT -7
Hello i am a transradial amputee recent had a accident about a year ago and had micro surgery to repair all nerves and all in right forarm but it didnt work so a year later with no function and pain as well as muscle atrivy i decided to have transradial amputation with targeted muscle reinervation i had it done a week ago now and have phantom pain like crazy hoping neroma goes away. And they say dressing change and compression therapy in another week. Anyways any advice or anything would be greatly apprieciated. Thanks james
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Post by stonecutter on Mar 21, 2017 9:02:41 GMT -7
Well, this is a very annoying thread. The original poster registered this, posted this thread and never returned.
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