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Phantom Limb Pain from a Hoomans point of view!
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19 November 2017 - 7:21 pm
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Phantom Limb Pain from a Hoomans point of view!

Hi Tripawds community

I have a friend who is currently enjoying a sunny winter in Mexico, who graciously accepted my request to join the discussion about Phantom Limb Pain.

I am going to ask her to sign in as a member so that she can join the discussions, otherwise, I can be her middle woman if that is not possible for her to do so… ‘copy, paste… copy, paste…’! I can do that!

I thought it might be insightful to get some information from a Hoomans point of view on effects of Phantom Limb Pain from an amputee of many years. So I asked my friend, Leslie, if she wouldn’t mind giving us her thoughts and experiences.

This was my question to Leslie…
“Hi Leslie, hope you’re doing well?
I have a couple of questions for you… I would like to ask about your amputation and phantom limb pain, if you have any…

My comrades on Tripawds are not getting much info from their vets about phantom limb pain. The vets have only just started prescribing Gabapentin for the nerve issues, but they don’t know much about it. I know a lot about it cause I was on it for more than a year!
In a lot of cases animals are sent home with far too little for pain meds.

You have lived with your amputation for a number of years correct? Do you or did you suffer from Phantom limb pain, or shocks etc?
I am assuming the brain functions the same for humans as well as animals… if the brain registers a missing limb it will send a shock message right?
My dad had his leg removed, but passed away shortly after. He used to complain of his constant itchy foot! You’re the only person that I feel that I can ask frank questions to. I hope you don’t mind Leslie. The folks on Tripawds will appreciate any information that can help us understand an amputation from a Hoomans point of view, based on your experiences!”

This was Leslie’s very informative reply…
“Hola Petra, It is torrential rains today, so am getting caught up on messages. My apologies for taking so long but I hope the following helps. One caveat, this is from my personal experience and in no way represents a medical opinion…

I suffered a left leg amputation high above the knee (AK) many years ago (due to Leiomyosarcoma) and still suffer the effects of PP (Phantom Pain ). At the beginning, it was far more severe in frequency and intensity, but to this day, it can still start to `fire`under certain conditions which I have learned to identify and try to avoid. Indeed it is the brain misreading signals but the pain is very real. I describe it as a lightening bolt through my body and is indeed a shock! It can present on a one time basis, or when it gets away on you, it will fire constantly, and this is PP at its worst. Really it stems from hundreds of dangling nerve endings which no longer connect to a complete circuit of nerves which the brain reads as a nasty signal. I have learned that certain conditions will exacerbate it.

The concept of pressure on the distal end of the limb is something I found helped a great deal – in fact, when the pain is so severe you scream in Hell, I immediately get into my artificial limb and bear weight by walking in the prosthestis and this often lowers the frequency of the shocks almost immediately.
Failing a prosthestis, I have found that when it hits, I quickly get to massaging the end of the stump quite gently at first, then get in a bit deeper more like a massage. Then, I get off the leg, and stretch out flat on the bed and literally try to control the PP with my mind. It is a variable whimsical condition and you never know when it may strike.

For me, what seems to cause it is too much walking in the leg so I have learned to pace myself throughout the day – in it and then out of the leg. This seems to decrease the risk of the pain. Another thing that greatly aggravates it is sitting in an improper chair which of course makes me bend at the hip. This irritates the hip flexor and I am FAR better to lie rather than sit. It is indeed a fine line between creating the wrong conditions for PP to occur and to not.

With regards to temperature, I find it better to apply a cold pack to the distal end of stump for about 10 minutes at the most. The i’lI wrap it in a warm pack. Sometimes that will help.

I was put on meds which I quickly abandoned as they really didn`t do anything and are so invasive to other parts of the body. Interestingly enough, Petra, Gabepentin was used years ago to treat Diabetes! My father was on it. There are really no injections that will help either. When it now gets totally out of control, I take two muscle relaxants prescribed by my Doctor and this at least stops me from tensing up, anxiety rising, etc.

I have recently started to use good compression socks when I travel on airplanes and have fitted one out for my stump. No phantom pain during long trips on airplanes which is indeed a blessing. With this meagre information, I am now trying to apply it in my mind as to how and what things might help a Tripawd.

Do any of them get an articfiial limb so to speak or is the residual limb always hanging free which to me causes the onset of more frequent shocks. It would be worth massaging the stump on a regular basis,which soothes, and subsequently calms the brain down!

So far as drugs, perhaps this is the time to try medicinal marijuana oil which should not contain any THC. This has helped me in so far as it puts me to sleep when I feel some PP coming on. The pressure trick mentioned above should also help.
If you could give me some feed back from these notes, and tell me specifically what the dear animals present as the pain and when it seems to happen, perhaps then I could give you some better thoughts. Hope this is of some help Petra. Kindest regards to all and remember it should abate somewhat as time goes on.”

-———

Many thanks to Leslie for a very informative and caring reply!
I will “copy and paste’ any replies from the forum to Leslie and hope that she will log in and give further insight to her experience. I will paste back her replies if she can’t.
I hope that this discussion will in some way help us understand our fur kids and help them live happier & hoppier lives!

All the best from Petra and her Country Clan ❤️❤️❤️

On July 10/17 I became a Super Tripawd! You can find out more about my Pawrents Allensong but first Check out my 🎗 journey Super Stu Remember...“live in the moment!“  

Virginia




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19 November 2017 - 9:32 pm
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FASCINATING!!!!! 🙂 🙂  CHOCK FULL OF UNBELIEVABLE INSIGHT!! 🙂

THANK YOU PETRA!!!!way-cool

THANK YOU LESLIE!!way-cool

I can’t wait for Rene to see this!!!   I’m aure she’ll turn it into a special blog. This is great “go-to”” information when it comes to phantom pain !   It’s as close as we will ever get to knowing how sogs lrocess the pain, as well as what we can do to help stop/prevent it.

A heartfelt thanks to you both for putti g this together for the community.  

With gratitude

Sally and Alumni Happy Hannah and Merry Myrtle and Frankie too!

Happy Hannah had a glorious additional bonus time of over one yr & two months after amp for osteo! She made me laugh everyday! Joined April's Angels after send off meal of steak, ice cream, M&Ms & deer poop!

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19 November 2017 - 10:48 pm
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Thanks so much, Petra and Leslie! ❤ Her tips are exactly what we do for Loki (except for the prosthesis part).  He loves ice, pressure, and massage when he’s having a phantom limb issue. It’s nice to hear somebody put into words that those things actually are helping!

~Brittnie and Loki

🐾 I'm  Loki, the cutest guy around! 🐶

 I've been a tripawd since July 10, 2017, when I rid my life of a hemangiopericytoma! My mom, Brittnie, does most of the typing, so say hi to us both any time!

Canada
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19 November 2017 - 11:51 pm
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benny55 said
FASCINATING!!!!! 🙂 🙂  CHOCK FULL OF UNBELIEVABLE INSIGHT!! 🙂

Thanks Sally, I thought it might be interesting information and am super grateful to Leslie as well for taking the time to do this, but also for the complete self confidence that she has, to be able to share this with us. My admiration for her has gone up another notch!

I can’t wait for Rene to see this!!!   I’m aure she’ll turn it into a special blog. This is great “go-to”” information when it comes to phantom pain !   It’s as close as we will ever get to knowing how sogs lrocess the pain, as well as what we can do to help stop/prevent it.

I was thinking the same sort of thing… I don’t mind putting the blog together, I’m just not sure how to form it. I will see if Rene has some suggestions for me. My main thought was to get it up on a forum so that a conversation can get started. There may be questions that Leslie can answer from her experience… 

A heartfelt thanks to you both for putti g this together for the community.  

I think Leslie and I can say the same thing…. you’re more than welcome! I think we can all learn something from this.

wanderlustloki said
Thanks so much, Petra and Leslie! ❤ Her tips are exactly what we do for Loki (except for the prosthesis part).  He loves ice, pressure, and massage when he’s having a phantom limb issue. It’s nice to hear somebody put into words that those things actually are helping!

~Brittnie and Loki  

Thats fantastic to hear Brittnie, yes, it was major insight for me too and Stewie is LOOOOVING the fact that it means extra, extra attention! laughing Loki is one of Stewie’s Tripawd Twins! Both becoming Tripawds on the same day! How often does Loki present signs of phantom pain or discomfort? Stewie presents very little since I started his acupuncture, but as Leslie mentioned, if he has had a hard working day, it will present itself in the evenings. 

Thanks very much you guys, Leslie is going to be so pleased to hear that she is able to help! I will be passing on these thoughts and I’m sure she will be getting back to me soon with more thoughts, especially when she realizes that our fur kids can benefit!!! She is an animal lover through and through!❤️

Do we have any Tripawds with Prosthetics?

On July 10/17 I became a Super Tripawd! You can find out more about my Pawrents Allensong but first Check out my 🎗 journey Super Stu Remember...“live in the moment!“  

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20 November 2017 - 4:06 am
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This is, indeed, really interesting. It sounds as if Leslie’s phantom pain goes on for quite a bit when it hits, though, does it? It would be interesting to know because I don’t know about you guys but with Manni it always seemed to be more of a thing of a few seconds. He would be lying down somewhere and then jump up yelping, move around some and then it seemed to be gone again. Mind you: we didn’t get any Gaba and he doesn’t have a stump. I am wondering if ice or pressure would have helped him but I wouldn’t even have know where and how to apply it I guess. The one thing I did do was getting him a Thunder Shirt. Not because of any anxiety issues but because I did have a feeling that the somewhat gentle pressure helped him, which it sort of did. 

Thanks for that, Petra, and regards to Leslie for helping us! Maybe we (or Rene) could put together some more questions for her? 🙂

Tina

and Manni

Guardian of Manni the Wonderdog. -Or was it the other way around?
Osteo and amputation in Dec 2015. Second, inoperable, primary osteosarcoma found in June 2017.
The end of our adventures came Dec 10, 2017. 2 years to the day.

Manni's blog -dogblog-

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20 November 2017 - 9:49 am
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tinsch said
This is, indeed, really interesting. It sounds as if Leslie’s phantom pain goes on for quite a bit when it hits, though, does it?

Hi Tina, yes i would agree, it does SEEM that the pain goes on longer for Leslie. It does make me wonder if our fur kids might be feeling it more, but we aren’t seeing it all the time?! I wonder if having the stump, would agitate it more due to all the movement?

It would be interesting to know because I don’t know about you guys but with Manni it always seemed to be more of a thing of a few seconds. He would be lying down somewhere and then jump up yelping, move around some and then it seemed to be gone again.

Stewie seems to be the same way. Seemingly, very short bouts of irritation and then back off to sleep. My brain keeps going back to prior to his surgery though… he was in WICKED PAIN and did not show us the true extent of it! 

 Maybe we (or Rene) could put together some more questions for her? 🙂

I think this is a great idea… I am keeping all of the responses in my notes folder and I can go through and highlight all the potential questions. Right now Leslie and I are communicating over messenger, we may have to figure out a better way…

Please give Manni special cuddles from me and Stewie and I’m sending him kisses across the miles!

Petra & Gang ❤️❤️❤️

On July 10/17 I became a Super Tripawd! You can find out more about my Pawrents Allensong but first Check out my 🎗 journey Super Stu Remember...“live in the moment!“  

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20 November 2017 - 11:01 am
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Thank you both very much for taking the time to put this information together. It really does help to give perspective. The advise is very helpful. It is really good to know that some of what we have been doing is helping to keep our furbabies comfortable. 

heartHugs to you and your crewheart

Hugs,

Jackie, David, Bo, Andy, Oscar, Angel Mitchell, and the coolest feral tripawd kitty Huckleberry

Huckleberry's Blog

The Rainbow Bridge



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20 November 2017 - 11:31 am
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WOW! This is terrific Petra, thank you!

We’ve never found a good opportunity to ask a human amputee about phantom pains so we greatly appreciate the information. What she says is spot on and the methods to alleviate the pain is similar to what’s recommended in our phantom limb pain blog posts. What’s so strange (and good thing) is that not all Tripawds experience this pain. Our Wyatt Ray has only had a handful of occasions in his 8 years where we suspected his sudden yelp or jump was caused by the condition. He recovers quickly, so we never needed to pursue any therapy specifically for it. 

I’m curious if she has ever tried acupuncture?  Or used something like Gabapentin or Lyrica? 

Yes, I would looooove to reprint this as a blog post to add to our collection, if that’s alright with Leslie. We would give her full credit of course and if she wants to use her last name too and a photo, even better but not required.

Do we have any Tripawds with Prosthetics?

 Not active members, but there are a few who wander in and out like Snowball

It's better to hop on three legs than to limp on four.™
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20 November 2017 - 12:16 pm
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Hi Jackie, thank you. I actually had Huckleberry in mind as I was reading Leslie’s responses. I hope the info helps.

Ear rubs to Prince Huckleberry and his adoringly brothers! 

jerry said

I’m curious if she has ever tried acupuncture?  Or used something like Gabapentin or Lyrica? 

Leslie said                                                                                                                                                                                                 I was put on meds which I quickly abandoned as they really didn`t do anything and are so invasive to other parts of the body. Interestingly enough, Petra, Gabepentin was used years ago to treat Diabetes! My father was on it. There are really no injections that will help either. When it now gets totally out of control, I take two muscle relaxants prescribed by my Doctor and this at least stops me from tensing up, anxiety rising, etc.

I will ask Leslie if she has had acupuncture. 

Yes, I would looooove to reprint this as a blog post to add to our collection, if that’s alright with Leslie. We would give her full credit of course and if she wants to use her last name too and a photo, even better but not required.

Putting this into a blog would make Leslie immensely happy I think! I will ask her about the picture. 

Is there anything that you would like me to do for this blog prep? Please let me know.

Thanks to everyone for making Leslie feel like she can be of some help! She has sent me another response, so I will copy it back in here shortly.

❤️❤️❤️

On July 10/17 I became a Super Tripawd! You can find out more about my Pawrents Allensong but first Check out my 🎗 journey Super Stu Remember...“live in the moment!“  

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20 November 2017 - 12:16 pm
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Leslie said:

“Yes at times my phantome pain continues for a great length of time – usually when I have abused it! The pressure should be applied where the limb was amputated – right at the distal (far) end. When your animal jumps up it is because the nerves are short circuiting, and pressure right then should help somewhat. Something of not, I attended a special Premier down here in Mexico for Planned Pethood International with the vet from Animal Planet. He asked to see my notes as well and said it would no doubt help the Tripawds. Petra, anyway you want me to communicate with your group is fine with me. Messenger works, so does my e-mail. Is your group alla in one massive e-mail – that way others could see the responses. xoxo Wish I were there to massage and help Stewie!”

”Acupuncture did not work nor any drugs. I will get on to your site as a guest. Glad I can be of help.”

I think Leslie has signed in as a guest, as either “123bear” or as “Leslie”, she’s not sure for sure?

itll certainly make it easier if you can all ask questions directly.

Cheers to everyone

Petra, Stewie and gang ❤️❤️❤️

On July 10/17 I became a Super Tripawd! You can find out more about my Pawrents Allensong but first Check out my 🎗 journey Super Stu Remember...“live in the moment!“  

Virginia




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20 November 2017 - 5:08 pm
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While we’re getting vlogx, etc sorted out on this incredibly insightful topic, a couple of questio s:

  • Leslie, as far as you know, is your experience with phantom pain more the “norm” or the “exception”?  As Jerry mentioned it seems ro be more the exception in dogs and cats.  It may happen more often and just not properly diagnosed.  Happy Hannah’s own Orthopedic Surgeon said she’d never heard of it
  • Is there a “standard treatment” that appears to help with the majority, or is it more trail and error like you have endured in order to find relief?
  1.  there a “standard treatment” that appears to help with the majority, or is it more trail and error like you have enduried in order to find relief?

Thank yiu gain for being so generous with yiur invaluable  information!  For you and Petra to collaborate in this way is not just “happenstance”.   I feel like this will be quite impactful in the future for how we address phantom limb pain in our animal beings.  Conversely, maybe what we’ve learned with our dogs and cats can help humans!! 🙂   Just the distinction that the phantom pain in animals appears to be in short spurts and more lingering in humans, could lead to better understanding of ways to make in short term for humans!  Of course, nonexistent would even be better! 🙂 🙂

With love and appreciation,

Sally and Alumni Happy Hannah and Merry Myrtle and Frankie too!

Happy Hannah had a glorious additional bonus time of over one yr & two months after amp for osteo! She made me laugh everyday! Joined April's Angels after send off meal of steak, ice cream, M&Ms & deer poop!

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20 November 2017 - 7:21 pm
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Sally, I’m going to wait to see if Leslie is able to come in and answer these questions directly. Otherwise I will send her the questions in the morning. I sent her the link to this forum, so I’m assuming she won’t have any issues?

heartheart (I keep trying to push the ❤️ But my fingers are too big and I keep getting the 💩!!! 😂)

On July 10/17 I became a Super Tripawd! You can find out more about my Pawrents Allensong but first Check out my 🎗 journey Super Stu Remember...“live in the moment!“  

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20 November 2017 - 7:48 pm
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laughing poopicon_png💩💩😽 Story of my life! laughing

But seriously,  it is really fantastic to be able to have somebody to do this for us.  I wonder if this is a reason why my littleguy can be so unpredictable sometimes. Looking forward to getting more input. Thank you again!

❤❤

Hugs,

Jackie, David, Bo, Andy, Oscar, Angel Mitchell, and the coolest feral tripawd kitty Huckleberry

Huckleberry's Blog

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21 November 2017 - 1:41 am
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Loki is one of Stewie’s Tripawd Twins! Both becoming Tripawds on the same day! How often does Loki present signs of phantom pain or discomfort? 

Ahhh yes, twins indeed!!! Loki shows phantom pain signs maybe once a week, if that, usually triggered by sleeping in weird positions or overexerting himself. His primary tumor was wrapped around a nerve, so when that was first resected he developed neuropathy. His vet wasn’t convinced that gabapentin would help, so we didn’t get to start it until I demanded a prescription prior to amputation. Because of all that pre-existing neuropathy, he’s been at higher risk for phantom limb issues. We kept him on the gabapentin for just over four months, but he’s doing well without it now. ☺ 

🐾 I'm  Loki, the cutest guy around! 🐶

 I've been a tripawd since July 10, 2017, when I rid my life of a hemangiopericytoma! My mom, Brittnie, does most of the typing, so say hi to us both any time!

Michigan


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21 November 2017 - 4:17 am
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THANK YOU Petra for asking Leslie these questions & THANK YOU Leslie for taking the time to answer these questions for all of our tripawds! This is fantastic information a human perspective we can hear exactly what is happening with our animals. The answers we wish they could tell us!

Purrkins just started having episodes of phantom limb we go tomorrow for acupuncture. Purrkins started going right after his surgery. Dr Matt felt Purrkins was doing so well we could space them out & are at a 3 months maintenance tune ups now & I wonder if that’s why its showing up. Will be interesting to see what Dr Matt has to say and if we will need to go back for more frequent sessions again.

Purrkins episode lasted about a minute or 2 I would say I didn’t time it of course I was trying to help him get thru the episode. He was actually sleeping and out of the blue he jumped up in panic mode and lighting fast started to attack /lick & scratch his no arm fastidiously. I have seen this 3 times , I gave him a homeopathic remedy Hypericum Perforatum while it was happening and tried to massage him he wanted no part of the massage. He just wanted to lick it himself & me not interfere. It was distressing seeing him like that and I could not be of any help.

Purrkins has always had a twitch which I have brought that up to Dr Matt before but it is twitching more too. This doesn’t appear painful however I know if I have a involuntary twitch It is a irritant and you just want it to stop.

Does Leslie have muscle twitching as well or just the lightening bolt phantom limb pain? Is the twitch part of the pp?

Purrkins doesn’t have a stump either but they left a lot of skin on his. It seems like he needs a bra sorta speak. I guess cats have a lot of excess skin, thats what we were told when I asked what that was hanging after his surgery. I thought it would reabsorb but it never has it just hangs.

Has Leslie tried the Farabloc blanket? We were looking at that for Purrkins.
I’m hit & miss and will be until we get thru this with my Gram one way or another (she is still in the hospital)  We are hoping for the get thru this of course!

Thank you both again!!
❤️❌⭕️❌⭕️❤️

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