Hi Jo....I am one of those extremely lucky amputees. I lost my leg below the knee when I was 3 years old and I am now 76. I have never had phantom pains and very few problems wearing a prosthesis. Take good care of yourself Jo and hopefully you will be running marathons soon.🌸
That's amazing thanks for sharing your story. I think I could be maybe because children aren't really aware of their body so your brain didn't really connected to that leg yet and that's why you don't have phantom pain 🤔
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I was going to get a shot into my nerve once. I asked the doctor, "Will it hurt?" He said, "Not at all." He stuck the needle in, okay, not bad, then he started the injection. It felt like someone had energized a 1000 watt electric circuit in my foot. "You said it wouldn't hurt!" "It didn't. I didn't feel a thing." That doctor was a jerk!
Dang. When I had to get nerve blocks it was so excruciating. Even worse was it was 12 total shots. (6 on each side) Now I’m diabetic (T1) and I have a severe chronic joint conditions. So I’m constant living at at least a 7/10. But those blocks actually made me pass out twice.
You probably never thought you’d hear this but I’m actually a bit jealous of you! I had an above knee amputation in 2010. Unfortunately I am allergic to ALL opiates so the only medication I had after my surgery was Tylenol. No nerve blockers. No epidural. No other meds. I was also sent home three days after the amputation. I remember that time well... even ten years later. I’m glad you had appropriate pain control.
Luckily, I’m not allergic to pain medications. But like you, I got no epidural, no nerve block. IV Dilaudid, and sent home the next day, on pain medication. I’m 3.5 weeks out, and it’s still miserable
Next day!!! That is terrible I’m sorry you went through that. I couldn’t imagine going through all the pain of after my amputation without the drugs and help from all the nurses. They kept me for two weeks from walk in till release. But I had 3 surgeries the first 5 days.
Found your account on June 19, 2023, right after my below-the-knee amputation. You have been very comforting through these weeks of recovery. I know a lot of the feelings you express. Thank you so much!
❤thank you so much, I had a bad July 17th 23, I've been dealing with abscesses and infections since. Right now I'm on the Vanc shuffle at hm, I give myself 2 infusions every 12 hrs till Jan 8th 24. We're the tibula is the abscess is, everything I lift stumpy it pulls the scab apart. They told me after all the Vanco, they will do a revision on the bone so I feel like I'm back to square one. 😢
I am a traumatic AKA. June 2011. Your experiences are so relatable and spot on. You are a godsend to me. You truly understand what I go through every single day. Bless you 🧡💜💚❤️💙
On a funny note, my first language is not English, and I kept hearing that most of the amputees you know are baloney amputees... took a few seconds to realise you said Bellow knee amputees! 🤦🏻♀️🤷♀️
@@tombennethum6820 shut the fuck up you stupid piece of shit I was just correcting her because English is hard to learn and if I was in that situation I would want someone to tell me if I had a word wrong.
i have no words to express how in awe i am of you for sitting and talking about this. I think its important for people to understand what you and others go through, but its such an honour i guess, to have you share this. thank you.
as a neuroscience grad, phantom pain is SO interesting to me! it's crazy that the spinal cord/brain is like "huh? these nerves are supposed to go farther... something is wrong... PAIN!!!!!!!" and it's like no we meant to do this brain! shut up! it's interesting bc "pain," physiologically, is like the damage of tissue. so like it makes sense that if you're healing from something even that you're gonna have pain (like a torn muscle or something) but when it comes to nerve pain (phantom pain, chronic pain) it's like, the brain is genuinely just being dramatic and ur like YO! it's FINE! calm the fuck dOWN!! you know? but neuroscience/physiology/medicine still can't answer HOW to fix that. it's just like. idk. the way i think about the brain and brain-body communication makes it funny to me. of course i know it's not actually funny, and genuinely so painful and FRUSTRATING! and i think it's great that you're using this platform to educate and help others going through it! and i'm glad you're feeling overall pretty good. thank you for sharing :)
@@Surdeigt I have Fibromyalgia by now I’m used to the pain most days but when I get a bad flare up I’m just like “Ok body there’s nothing wrong stop feeling like your being set on fire”. In my worst flare ups with my skin when it literally hurts it’ll feel like a very very very very bad sunburn where anything touching the area hurts even sitting, laying down, as clothes will make me feel like my skin is on fire 🔥. When that append I’m just like “Ok skin your not burned your not on fire your fine no need to feel like your burning off”
Thank you for this comment! I was wondering "but..isn't there something going on in the brain that's causing the phantom pain? Seems weird it would be in the nerves alone." I can understand the answer of "the nerves are expecting to extend further, they send confused signals to the brain, the brain interprets those signals as pain. How to fix it? Science isn't sure yet." It's fascinating the different ways nerves send information to the brain and how the brain interprets it.
MI have phantom pain I had a flap cause of giant tumor sarcoma very painful above knee flap. Phantom pain very real. 2. 1/2 months after cerguries one on the 16 of August the flap on the 22 of August. Very electrifying
My grandpa was a double amputee (both legs completely- one leg was gone years before the second one). BUT I wish I would’ve found you earlier. My cousins just lost one of their good friends who lost her whole leg about a year ago. She would’ve loved to watch you. She is a beautiful angel now. Thank you for these informational videos. It reminds me of my best friend (grandpa) while I was growing up
@@kiwigirl3490 what are you talking about? They is a totally acceptable term to use for someone when you don’t know their gender or it just isn’t relevant info, that’s what they was originally used for always- as a non gender specific pronoun. How the FFFFFUUCCKKK is it disrespectful
This brought back so many memories... my dad lost his lower leg mid February (was not planned) I was there when he woke up and watching this big strong guy in tears because of the pain killed me more then I could imagine... thank God now his pain is so much less..
I've been an amputee for almost 15 years now, officially in November. Trans metatarsal of the left foot, and grand toe on the right. As it was due to infection in other cases, it hasn't hurt as much as it did before the amputations. The strangest feeling for me is when the missing parts itch, more than when they hurt. Longest I have dealt with phantom pain was 2 hours, usually just a few seconds or minutes is the norm. Worst pain was from the donor site for a skin graft for the left foot, that felt like a case of road rash, times 10. Solid 8 or 9 pain wise, for a few days, except when on Delaudin. And a staple mistake, in which they stapled part of the ace wrap to my knee. Yes, it has changed my life, but only as far as I let it. With the foot orthotic/prosthetic, I can still drive a stick, and ride my motorcycle, as well as walk short distances. There are 2 choices when you face something like this. Let it define you, or defy it. And it has never, and will never, defined me. Jo. Thank you for sharing your with us, through good and bad. You show those who are facing the loss of a limb that it's not the end of the world, and that it only limits you, as much as you let it limit you. You are an inspiration to me and others facing our own struggles.
My dear friend had her whole leg amputated 5 months ago. The phantom pain was excrucating 😢 The nerve blockers, pain meds, along with the morror work didn't help at all so she decided to find natural thereapies which helped within 3 treatments which she now has zero pain 🙌🙏🙌 I wonder if you've tried going this route? If not it's well worth a try especially knowing she's completely pain free! ❤
You are an absolute sweetheart! The reason I clicked on your video is that I have just had a total knee replacement & I wondered how it would compare to that. 🤔. I really feel for you in the fact that you were just starting to heal & that you had another fall & landed on the worst possible place! I wonder if things would have been different for you if that hadn’t happened. I can’t imagine how you managed to survive when you first woke up & the epidural hadn’t worked! That would have been unbearable!! Anyway, you are an amazingly strong young woman, a great mentor for others like yourself & certainly have a wonderful attitude after what has happened to you 💕. I wish you all the best for your future ❤️. Cheers 😊💕❤️👏🥰😍☺️
The remaining question that I have never seen/heard and answer about is: Are you better off than you were with the fused ankle? Initial understanding was that the "reason" you chose amputation was to be better off than you were with the ever-painful fused ankle. So....was it a good decision? and are you better off?
I'm facing this, and if I go through with this I'm willing to let you know my experience? Mine is a work related accident where I completely shattered my tibia, and crushed my ankle leading to 4 surgeries in the first month and 2 (one of them being the ankle fusion) more the following two years.. I am considering pushing for a below knee amputation to try and regain some freedom in life and from daily pain and lack of mobility.. the fusion has only helped with pain a small amount, mostly cause I had late stage arthritis from the initial injury. But it hasn't helped me with mobility, also pain with walking and uneven ground is still an issue
Thanks for making these videos It lloks like i am most likely going to lose my left foot. Yes, i am definitely scared, sad, overwhelmed etc but i am learning lots from a few of your videos! Thanks so much!!!❤
it makes me sad that pain of 1-3 is ok now. Happy for you that it's in that range rather than higher, but I wish it was 0. And I hope it will get there, early days yet really. Having said that, my fractured ankle still hurts a bit and it's just over a year, so I'm on a pain recovery journey too. Love to you, Jo, it's so good to see you looking so well again.
I'm glad you're back like I said before you're my inspiration I am a 70 year old woman black just had an amputation done in August of 2019 just got my prosthetic prosthetic leg last week doing pretty good can't balance myself yet but we're looking to do much better I give you a lot of things for listening I was listening to you a few months ago and now I know what to ask how to add when I go to the prostate doctor so thank you for being there for me without knowing it
I had my 2 part amputation May & June 2021 after 55 previous leg related procedures. I’m doing ok, my partner is my rock. My family however are oblivious did you find others feels so much harder than you thought they could be? Than you for everything you do I’m so grateful fit your bravery and honesty x
Jo, how does your daily pain now compare to the pain from your ankle pre surgery . That's the comparison that really matters . I appreciate all you do .
I immediately felt relief after my amputation. Phantom sensations were difficult but manageable. Getting my foot really help with the phantom sensations. Now I’m only getting them when I’m stressed or sick. Post op pain wasn’t all that bad. Honestly the worst was during a bout of osteomyelitis.
I've been watching you for the last month and a 1/2 I am looking at maybe having to get my leg amputated its the same leg as you. I received my leg injury when was shot arresting a person in October. He hit my telus. now I have no real function of my foot. Amputation is one of three choices that they're giving me. Not going to lie im scared, but your giving me help now. Thanks Eli.
I had my amputation back in September. I was expecting it to hurt a lot more, but I only really felt the difficult part of it for the first week, and most of that was due to swelling from complications that arose in the surgery - being on blood thinners, I lost about a liter of blood and needed an emergency transfusion halfway through the process. I was knocked out the whole time, so I was only made aware of it from the surgeon after waking up. Once the swelling was gone, phantom pain is all I have gotten since, and very sporadically at that.
Followup: no, the nightmare was the sepsis that I contracted. According to what the doctors told me, it was a random cockroach biting me. I wound up in the hospital as a result, and due to me living alone, nobody found me after about 14 hours. The end result was brain damage due to passing out. Still recovering to this day, living in a medical care facility, waiting for the time to recover well enough that I can move out and start my life from square one. Wish me luck!
I feel you girl I been a amputee for 7 to 8 years and when I first had my leg amputated it was really had for me because I was only 5 years old at the time and I did not understand what it met and the pain was not too bad for me the first few weeks mine pain was about 4 to 6 it was not super bad but when when I was in 4 or 5 grade my leg started to get soo much pian the I couldn’t walk or even use my leg I had to use my crutches a lot but it was not soo bad because I could get around on crutches pretty good and I could not put any pressure on my leg but then in 5th grade I had a another surgery for my leg Soo I could put pressure on it and I won,t have any pain and it work it has been a year every sents I got that surgery and I have be going pretty good and I got my leg amputated by NF which is a disease that over well I don’t know how many people have it but yes And it is really hard to be a amputee but we are doing a amazing job at it love you and your vids
I've a friend who is a postal carrier that recently lost her leg. Now I've a clearer understanding what she's going through thanks to your videos on your site. Wishing you best on your healing journey.
My best friend just lost his leg two nights ago in an accident. Looks like im going to be the one to care for him. Thanks for the information. Im studying all I can about what to expect.
I'm writing a romance novel where the main character is an amputee with a transtibial prosthetic and so I'm doing research into it and looking for those with lived experience. This video has been so helpful! I'm going to be watching lots more to grasp important info about those who have real life experience so I can respect the subject and give the character a relatable story with accuracy. Thanks so much for sharing this!! xx
Hi Jo, 5 weeks into a B.K.A. right side. I knew it was going to happen and started watching videos on the subject and came across yours. Really helped me get my head into the right way of thinking before the surgery, thank you. I went to see an acupuncturist after 3 weeks and lost most of my phantom pain. Went back a week later for round 2. Waiting for my next visit. Again, thank you for your informative videos.
@@FootlessJo Really like this video. I am an RN and this was quite educational. In my current job one of the main focuses is pain control, and I have worked with several amputees. A couple of questions? Did anyone ever mention a rhizotomy (nerve oblation) for your phantom pain? Also has methadone ever been suggested (yes, methadone)? Opioids really don't work well for nerve pain -- it seems like you probably know that now. Methadone is very different. We use it a great deal for neuropathic pain and it works really well. A very tiny dose does wonders and it doesn't fog up your brain like oxycodone or dilaudid or any oh the others. Unfortunately there is a stigma attached to it. Anyways, you have a fascinating channel. I'm sorry your journey has been a physical and emotionally painful one.
Well there you are! Welcome back girl! For me the hardest was the first month, but I also had a debridement surgery a few days after I hit my 1 month mark. That wasnt too bad. I stopped taking my pain meds about day 21, two days after I came home from rehab. No pain meds after minor surgery either. Now almost 8 months and 2 prosthetic legs later I rarely get any pain. My first leg was awful but I since I switched to my suction system and my k3 foot its much better. Stay safe and lots of love to you and Brian!!!💜
"It is very hard to get a prosthesis to fit the way it needs to" I can see why. It really is amazing; your body adapts your legs specifically for you and your activities (for example, if you do a lot of walking your leg muscles will become structured for the pressures from walking, but maybe not for running or standing upright statically for a long period of time. The muscles also have to be unique to supporting your body weight). Mechanical things like a prosthesis don't have that kind of adaptability, so it takes a long time to figure out what the exact fit is to get a similar comfort that having the right leg muscle structure would get you depending on your activities.
thank you so much for sharing your journey! my best friend lost her right leg also about the same amount as you this past sunday and i’ve enjoyed watching your videos so I can reach out and help her!
Joe you’ve been though so many operations as a teen to now as a young adult. Your so tough, positive attitude & helpful. I really wish you a happy pain free life once adjusted to your prosthetic. God bless you dear
Hi JO! I fell off the loading dock at work a d had a Trimaeollar fracture. Had 3 surgeries and i ended up having an infection in the bone. So, after findi g out i can'y get rid of the infection i am having a BKA next fri. I've been watching your videos and i can honestly say "Thank you" so much for making these videos! I really appreciate you and you really are a godsend. I hope you are doing well. I'll be watching uour videos when i'm in the hospital. Take care...
I've heard that my condition, CRPS is very similar to phantom pain. My leg is tingling as I watch this video. I know exactly what you felt during those early weeks. It sucks. I'm glad the pain became manageable, mostly.
My first amputation was so incredibly painful, in particular, because they couldn't wake me up from the anesthesia so they flushed my system of all narcotics so I felt EVERYTHING!!! It was a right below knee amputation and it hurt like hell for weeks!
Hi Jo! Thankfully my experience wasn’t as bad as you. I had bilateral BKAs - my epidural didn’t work but I swiftly had nerve catheters put in which worked well. I also had phantom pain which mostly kept me awake more than caused me distress. This was controlled with lyrica. I am just constantly amazed how little pain is involved in losing limbs!
This is very helpful for me.. January i found out that they were unable to repair my foot anymore and so amp was the plan. - fast forward 3 months after consultations and confirming thats the plan and i signed the papers to schedule my amp, and the world went into lockdown.. all non emergency surgeries on hold.. so i sit waiting for it to happen.. slow torture. but knowing more details of how it work has kept me going. information is empowering.
Jo! Just one thing for the sake of a smile. I misheard you & thought you said your friend had a BALONEY Amputation!! Would that make the person more HONEST? love Steve Holliday
I'm not an amputee, but I'm in chronic pain since 2015. Had smashed my left arm (don't walk your dog and look at your mobile). I'm on pain meds every since. Tilidin, Gabapentin, Novalgin, Ibuprofen. Therefore I find your video very interesting. Wish you all the best and I'm happy you're feeling finally a little bit better. Love from Germany
I think you said it perfectly Jo when you said that the pain was like a moving target the first few months. My pain was kept under control, for the most part, post surgery in the hospital. It really didn’t kick in until about the first full week after being home. And because I had been a chronic pain patient for several years and on narcotics as a result, I though that I had things under control and could handle the pain. Boy was I wrong. However, with the help of my wonderful surgeon, his team, and my physiatrist (pain doc), we found a regimen that worked. After a couple of weeks of being on the new schedule, things started to level out. I’m now 10 months post surgery and I still deal with a lot of nerve and leg pain due in part to the many socket issues that I continue to deal with. Oh, and about two months ago, phantom pain snuck it’s ugly self into the mix. Which is a different story unto itself. I’m hopeful that the TMR procedure I had during the amputation surgery will start to work in a few months, which will have a significant effect on the phantom pain.
Calling phantom pain the zaps sometimes is very appropriate. Is what I call it, and still have the zaps (even with meds) 5+ years afterwards. In my case amputation significantly lowered pain level to about level of an electric shock. Is very manageable. Your videos are very good.
I am a bilateral BKA and have been for many years. I think one of the most important things you said is “everyone’s different”. In my case I had extreme, level 10+ pain post surgery and had to be in ICU for more than a week on both of my amputations. Basically knocked out until everything settled down. Like you I had to have revision surgery several times. i have daley residual limb pain for which I take pain medication, not every day, but often enough. I still have phantom pain usually several times a day. Mine feels like someone’s sticking a hot knife in my foot, other times it’s an electrical shock type pain. The only bright spot with phantom pain is that it is usually sort lived. One thing that really annoys me is when people who have never had an amputation thinks that phantom pain is fake pain, and it is obviously not. I’m on 3600 mg of gabapenton as well as a maximum dose of Lyrica daily and it appears that I’m going to be one of the unlucky ones and have to deal with it the rest of my life. I am a certified peer visitor and speak with many amputees, and everyone has a different experience regarding pain.
Thank you for your video it was very informative . I was just told I’ll be loosing my foot. I’m a disabled Veteran who’s already had 6 surgeries and it’s to that point. So I’ll be starting my journey.
Hey jo! So.good to see you so glad your feeling better, have definitely missed your videos but I totally understand you need to look after you. great video as always 💜
Thankyou for this, l have to have my leg amputated below the knee, I'm in serve pain from my spine which I need another spine operation, If my pain hits 10 i can cope if it goes pass that I'm in trouble, they won't do surgery on my spine until the leg amputation Thanks for sharing my friend ❤️
Thank you jo fo for putting up this information. For me it was a 10 because they put the cast on too tight and i had to wait 2 days to get it off. After that i had blisters that burned but docs gave me enough morphine that helped and it was up and down from there in rehab. Now i did slam my stump into the ground at rehab and then my soul left my body and never felt anything ever so painful in my life period. But by the end of rehab 1 month of it it was painful but bearable when i got home. It is now pain free expect for phantom pain that comes and goes. I am 1 yr and half out now.
I so needed this video. I’m currently a trans metatarsal amputee / all toes, but my doctor is suggesting I look into an amputation below the knee versus 3" more of my foot amputated. Thank you for this.
I had an elective below knee amputation and I asked before the surgery if I could go home after, the doctor left it up to me. My surgery was at 11:00 and I was in my recliner by 4:00pm. I didn’t know any different and found out later that it’s not the norm to come home the same day. Had pain but it was manageable. Has anyone else come home the same day and how did it go? Thank you
It is different for everybody. I had a below the knee amputation a month ago, and the only pain I've had at all was some mild ghost pain the first few days, and some soreness now that I'm being fitted for a temorary prosthetic. But really no pain at all.
Fascinating to know that mirror therapy actually works. I remember seeing an episode of House about it and wondering if it actually works in the real world. I'm really glad it's been working for you.
Great to see a new video, Jo! I'm happy you are feeling better, and I hope you continue to improve quickly. Your videos are always informative. Speaking of the theme in this post, I'm reading a issue of Smithsonian from a few months ago that featured articles about pain. It is amazing to read how very differently each single person perceives and processes pain. One section in an article also talked about how mood can intensify pain, which makes sense - if you are feeling down or depressed, your pain level will typically be more acute. I was encouraged to read of the research that is happening to find better, non-addictive therapies, although it will still be a while before they are available. Not sure if you've ever talked about it, but how do you manage all the meds that you use, and what kind of research do you do if a new one is introduced into the mix? Thank you for sharing your time and talent with us... You are awesome.😄
Hi Jo, I hope you're doing well. Just seen this video. I lost my left leg exactly one year ago as I write this. I was taken to hospital with the worst imaginable pains down my lower leg on the 26th March 2023. I woke up some time in April and was told that the DR had to remove my leg above my knee. I had a blood clot caused by sepsis. The details are quite vague. All I know is that they induced me into a coma and around a week later, decided amputation was the only option. I was so lucky not to have any pain at all. Clearly good meds. In fact, I had more pain on my right thigh after they had removed good skin to graft onto my residual limb. But I can honestly say that I don't really get pains. I do get twitches and sensations often, but not pain. I've been using a prosthetic leg for the past 9 months but now waiting to go back for a microprossesor knee which I'm excited about.
I was in a motorcycle accident July 26 2020. I had to have my right leg amputated above the knee. I find your channel interesting. Amazing how joyful you always are lol. I'm not grumpy or anything but definetly not as happy as you seem to be. Keep doing what your doing! 👍🙂
I too had an accident that led to having my subtalar joint fused but fused badly in a crooked position and was chronically painful, corrective surgary made it worse and my job meant i was on my feet al day. I eventually was diagnosed with complex regional pain syndrome so it meant amputation may not help as one would think but i had had close to 30 surgeries that had fused every joint in my foot and that just does not work. I was suicidal from pain so they eventually amputatated. I can relate to much of what jo has said. I am many years down the track it has been complicated but i have never regreted the chiice i made to amputate. It became a threat to my health, i would have taken my life but it was like a rebirth. Now i am wheelchair dependant but i developed ms that has affected my full leg more than my amputated limb but that was just but luck. But one is that chronic centralised nerve pain is different to phantom pain but they can be managed. Earlier referral to a pain unit is the one thing i think should have happened and might have help both me and jo but not necessarily saved a crapped natural limb!!
Thanks for this vid. Very informative. I'm not yet an amputee but have advised one of my Dr's that I'd rather have my leg cut off than deal with the constant pain and having had a number of infections in my left leg, which has often led to sepsis. Been on various strong painkillers but no benefit. Preventing me from living any sort of life.
I like to use Mankoski pain scale. My doctors don’t know about it/don’t want to use it, but I find it great to grade my pain. I am not allowed to use painkillers. It is a struggle to manage the pain.
Had my BKA in Aug '23. Took pain pills for 3 days. After that, nothing. I also have some neuropathy. I've had quite a bit of Phantom pain though. That is weird. Still waiting for my leg to heal after 7 mos. I did not have a cast. I used an ampushield for a while. My leg skin around the wound feels like l fell & skun my knee, but I didn't. I have diabetes so that doesn't help with healing. My A1c went from 8.7 before surg to 6.4 now! I'm eating much better & it is working. Love your videos Jo ❤ Thank you.
Thank u so much for making this video...I have a rare foot condition and was given a 50-50 % chance of saving my foot or losng my foot ...I really appreciate people like u letting me know what possibly could happen if I have to lose my foot thank u so much!! ❤
My dad just had an elective below knee amputation last week and your videos are helping a a lot with what to expect and what he is going though. Thank you!!
It's wonderful to see you back here! I think 'going back' is a great way to start up again. You got me thinking about my surgeries (11 so far.) Without going into detail, in my cases resulted in a great reduction in my pain levels. There were certainly pain issues during recovery, but when I compare how I felt before to how I feel after recovery it all seems to have been worth it. Thank you and welcome back!
Hope your pain management keeps improving with Meds and physio and good prosthetics Jo. Thanks for sharing your experiences. It is strange how the mind works sometimes. Hopefully as more time passes, it may help your mind to adjust and releive Phantom Pain. 🙏🏻
Hi jo I can’t imagine the pain that you went through. I suffer with what I call severe back pain but listening to you and your pain is way beyond what I could deal with. I have injections in my back so that for a number of years I’m pain free. Thankyou for your videos it helps others that think their pain is bad but in reality compared to you is minor xx
I'm not an amputee, and I'm not sure if what I have even compares to the phantom pain you experience... I have peripheral neuropathy in both my feet, and it also is in the lower half of my left leg. I had hoped the nerve pain in my leg would go away after my lumbar fusion surgery in 2011, but it only got worse. I think the severe DVT in that leg attributed to more severe nerve damage(the iliac artery collapsed onto the iliac vein, which caused my entire left leg to clot.. mostly because I was discharged from the ER the first time I went with symptoms). The nerve pain feels similar to a "hot" electrical wire being jabbed, repeatedly into my leg... but, like I said, I'm not an amputee, so 🤷♀️
It's midnight where I am and going in for a right below the knee amputation. Pretty nervous right. Watching these videos is keep me from freaking out. I hope I'm making the right decision. I haven't walked in a year and and a half due to a dump truck hitting me head on while riding a motorcycle. 8 months before that I was in a pretty horrible fire that brunt over 55 percent of my body 3rd 4th 5th degree. My leg being the worse. I have fought infection after infection. Now my ankle is fused at a 30 degree angle and hurts all the time. Hopefully here in a few hours a new beginning of walking again will happen. Thanks for the vidios I've needed them.
They were never able to get an epidural in 4 out of 5 surgies for me and they tried a nerve block that didn't work too. I woke up screaming after all but one of the knee replacement surgeries. The cattle prod is a perfect example. Surgical pain thankfully gets better within a couple of weeks and then when you are doing physical therapy which is a total different kind of pain. Im glad that you are feeling better Jo. Im not sure if it's the same pain of having an amputation done. I always was curious about that. Glad you are back. 😊
So glad yur back and doing better. I just had a night of like the worst pain of my life. I got a stomach ulcer and man those things hurt. I never wanna be in the pain your talking about I wouldn't manage I think I would go insane
Good to see you are doing better, Jo. Hope it all keeps going up for you. Now don't push yourself too hard and only do the things you can handle. We're not going anywhere. Literally. My government has me on an 'intelligent lock-down'. Funny thing about putting pressure on damaged bones. If done too early (as in the fracture or tear or whatever is still very much there) it can be damaging. Once the damage has healed a little, pressure will actually stimulate the bone to heal faster. I can imagine this is one reason they can fit people fairly early for a prosthesis. So, if you have a good doctor who says a cast can come off and you can try using your limb again (gently!), you should be able to do so and actually do it. In this case, using is healing. :)
While I've never had an amputation, I have had both knees replaced with prosthetics. The second one is giving me a few minor issues, (10 months after the surgery), namely occasional pains right through the middle of the joint. Since there is obviously no neural connection to the prosthesis, as that is where some small bits of bone were removed to fit the hardware, I asked my surgeon whether this was similar/related to what amputees know as phantom limb pain. He said, "It can happen." Interesting. I did not have/do not have that issue with the other knee, which was replaced 10 years prior. So, yes, everyone is different, and people can be different from side to side, or year to year.
Did you sue the restaurant that had the greasy floors that caused your fall... and also I'm not sure by your wording, but did the fall cause the issues that led to the second amputation or was it unrelated?
Is it an American thing to want to sue everyone? No disrespect intended, legit asking because I hear of Americans suing for seemingly everything. This would not be a law suit in my country, they'd just be like "well sometimes floors are slick so be more careful next time"
@@commanderrussels2612 well if the restaurant was negligent and didn't keep the floors clean or properly warn someone that there was a grease spill or that it was wet and you get hurt to the point of hospitalization why not sue and have the people at fault cover the costs of it.. maybe it is an American thing idk tho 🤷🏽♀️
@@jasminethompson8808 It seems like over a lifetime you'll eventually run into a wet floor though, and that Americans always attach big numbers to these law suits rather than just the medical bills. Like it isn't the 5,000 co-pay, it's 5 million pain and suffering for slipping and falling.
@@commanderrussels2612 my sister's mother-in-law slipped in a grocery store and now has brain damage and can no longer work and has lasting pain... that's definitely worth 5million for pain and suffering
@@commanderrussels2612 it's the same here in Sweden. we have insurance that pays really well, you can easily get at least 100.000-1000.000 SEK ($1 = 8-9 SEK) when you lose or injure a limb
![You Won’t Believe What Phantom Limb Pain is ACTUALLY Like [CC]](http://i.ytimg.com/vi/0GuE7NaJGb8/mqdefault.jpg)
Hi Jo....I am one of those extremely lucky amputees.
I lost my leg below the knee when I was 3 years old and I am now 76.
I have never had phantom pains and very few problems wearing a prosthesis.
Take good care of yourself Jo and hopefully you will be running marathons soon.🌸
That's amazing thanks for sharing your story. I think I could be maybe because children aren't really aware of their body so your brain didn't really connected to that leg yet and that's why you don't have phantom pain 🤔
For our sins we deserve eternity in hell, but God loves us so much he came as Jesus to pay the price of our sins through living a perfect life for us, his death and his resurrection so we can be forgiven and receive eternal life if we follow and obey him in faith FOR LIFE , Jesus loves u and desires to have a personal relationship with you of love, peace, redemption and obedience ✝️
May Jesus bless you, repent of your sins and turn to Christ before it's too late 🙏🏿❤️
I was going to get a shot into my nerve once. I asked the doctor, "Will it hurt?" He said, "Not at all."
He stuck the needle in, okay, not bad, then he started the injection. It felt like someone had energized a 1000 watt electric circuit in my foot.
"You said it wouldn't hurt!"
"It didn't. I didn't feel a thing."
That doctor was a jerk!
Dang. When I had to get nerve blocks it was so excruciating. Even worse was it was 12 total shots. (6 on each side) Now I’m diabetic (T1) and I have a severe chronic joint conditions. So I’m constant living at at least a 7/10. But those blocks actually made me pass out twice.
@Joe Battiloro Dad joke!
I was in a car crash and got like 20 of these and it hurt more than the damn crash
@@kate_undercover6184 But did it hurt the doctor?
Jerk doctor. But he only wanted to comfort you
You probably never thought you’d hear this but I’m actually a bit jealous of you! I had an above knee amputation in 2010. Unfortunately I am allergic to ALL opiates so the only medication I had after my surgery was Tylenol. No nerve blockers. No epidural. No other meds. I was also sent home three days after the amputation. I remember that time well... even ten years later. I’m glad you had appropriate pain control.
Luckily, I’m not allergic to pain medications. But like you, I got no epidural, no nerve block. IV Dilaudid, and sent home the next day, on pain medication. I’m 3.5 weeks out, and it’s still miserable
Next day!!! That is terrible I’m sorry you went through that. I couldn’t imagine going through all the pain of after my amputation without the drugs and help from all the nurses. They kept me for two weeks from walk in till release. But I had 3 surgeries the first 5 days.
Wow. I'm sorry you went through this 😢
You should have been given ketamine for your pain.
Found your account on June 19, 2023, right after my below-the-knee amputation. You have been very comforting through these weeks of recovery. I know a lot of the feelings you express. Thank you so much!
Wishing you all the best with your healing
❤thank you so much, I had a bad July 17th 23, I've been dealing with abscesses and infections since. Right now I'm on the Vanc shuffle at hm, I give myself 2 infusions every 12 hrs till Jan 8th 24. We're the tibula is the abscess is, everything I lift stumpy it pulls the scab apart. They told me after all the Vanco, they will do a revision on the bone so I feel like I'm back to square one. 😢
Not bad, bka
You're awesome, I watch you all the time!
I am a traumatic AKA. June 2011. Your experiences are so relatable and spot on. You are a godsend to me. You truly understand what I go through every single day. Bless you 🧡💜💚❤️💙
On a funny note, my first language is not English, and I kept hearing that most of the amputees you know are baloney amputees... took a few seconds to realise you said Bellow knee amputees! 🤦🏻♀️🤷♀️
Had the same problem in the beginning! I realised that she said below knee only after watching a video with subtitles
It's below knee not bellow. :)
@@tombennethum6820 shut the fuck up you stupid piece of shit I was just correcting her because English is hard to learn and if I was in that situation I would want someone to tell me if I had a word wrong.
@@tombennethum6820 I drive the golden eagle
it does sound like she is saying baloney
i have no words to express how in awe i am of you for sitting and talking about this. I think its important for people to understand what you and others go through, but its such an honour i guess, to have you share this. thank you.
as a neuroscience grad, phantom pain is SO interesting to me! it's crazy that the spinal cord/brain is like "huh? these nerves are supposed to go farther... something is wrong... PAIN!!!!!!!" and it's like no we meant to do this brain! shut up!
it's interesting bc "pain," physiologically, is like the damage of tissue. so like it makes sense that if you're healing from something even that you're gonna have pain (like a torn muscle or something) but when it comes to nerve pain (phantom pain, chronic pain) it's like, the brain is genuinely just being dramatic and ur like YO! it's FINE! calm the fuck dOWN!! you know? but neuroscience/physiology/medicine still can't answer HOW to fix that. it's just like. idk. the way i think about the brain and brain-body communication makes it funny to me. of course i know it's not actually funny, and genuinely so painful and FRUSTRATING! and i think it's great that you're using this platform to educate and help others going through it! and i'm glad you're feeling overall pretty good. thank you for sharing :)
I have chronic illness with alot of pain and oh my, I wish I could win an argument with my brain someday. I'm like "IM NOT ON FIRE, CALM DOWN!" 🙈
@@Surdeigt I have Fibromyalgia by now I’m used to the pain most days but when I get a bad flare up I’m just like “Ok body there’s nothing wrong stop feeling like your being set on fire”. In my worst flare ups with my skin when it literally hurts it’ll feel like a very very very very bad sunburn where anything touching the area hurts even sitting, laying down, as clothes will make me feel like my skin is on fire 🔥. When that append I’m just like “Ok skin your not burned your not on fire your fine no need to feel like your burning off”
Thank you for this comment! I was wondering "but..isn't there something going on in the brain that's causing the phantom pain? Seems weird it would be in the nerves alone." I can understand the answer of "the nerves are expecting to extend further, they send confused signals to the brain, the brain interprets those signals as pain. How to fix it? Science isn't sure yet."
It's fascinating the different ways nerves send information to the brain and how the brain interprets it.
Your long story of phantom pain, is pointless!!!
MI have phantom pain I had a flap cause of giant tumor sarcoma very painful above knee flap. Phantom pain very real. 2. 1/2 months after cerguries one on the 16 of August the flap on the 22 of August. Very electrifying
My grandpa was a double amputee (both legs completely- one leg was gone years before the second one). BUT I wish I would’ve found you earlier. My cousins just lost one of their good friends who lost her whole leg about a year ago. She would’ve loved to watch you. She is a beautiful angel now. Thank you for these informational videos. It reminds me of my best friend (grandpa) while I was growing up
Omg I didn’t actually expect you to reply, also this helped SOOO much thank you 🙏☺️
Are you getting a amputation
@@kiwigirl3490 I wander if they are
@@reaganperry386 hope not that would be sad
@@reaganperry386 I like how you said "they" instead of guessing the gender that's so disrespectful
@@kiwigirl3490 what are you talking about? They is a totally acceptable term to use for someone when you don’t know their gender or it just isn’t relevant info, that’s what they was originally used for always- as a non gender specific pronoun. How the FFFFFUUCCKKK is it disrespectful
This brought back so many memories... my dad lost his lower leg mid February (was not planned) I was there when he woke up and watching this big strong guy in tears because of the pain killed me more then I could imagine... thank God now his pain is so much less..
Was he in a car accident or something?
I had something happen(not amputation) and watched my dad cry, broke me
@@JonathanChan212 no, just a fluke issue
@@AssassinAnna Oh. Well, at least it wasn't as major as an accident.
@@JonathanChan212
Why don't you lose a bodypart and then tell her "oh well, at least is wasn't that "major" ". What a rude, assinine thing to say.
I've been an amputee for almost 15 years now, officially in November. Trans metatarsal of the left foot, and grand toe on the right. As it was due to infection in other cases, it hasn't hurt as much as it did before the amputations. The strangest feeling for me is when the missing parts itch, more than when they hurt.
Longest I have dealt with phantom pain was 2 hours, usually just a few seconds or minutes is the norm. Worst pain was from the donor site for a skin graft for the left foot, that felt like a case of road rash, times 10. Solid 8 or 9 pain wise, for a few days, except when on Delaudin. And a staple mistake, in which they stapled part of the ace wrap to my knee.
Yes, it has changed my life, but only as far as I let it. With the foot orthotic/prosthetic, I can still drive a stick, and ride my motorcycle, as well as walk short distances. There are 2 choices when you face something like this. Let it define you, or defy it.
And it has never, and will never, defined me.
Jo. Thank you for sharing your with us, through good and bad. You show those who are facing the loss of a limb that it's not the end of the world, and that it only limits you, as much as you let it limit you. You are an inspiration to me and others facing our own struggles.
My dear friend had her whole leg amputated 5 months ago. The phantom pain was excrucating 😢 The nerve blockers, pain meds, along with the morror work didn't help at all so she decided to find natural thereapies which helped within 3 treatments which she now has zero pain 🙌🙏🙌 I wonder if you've tried going this route? If not it's well worth a try especially knowing she's completely pain free! ❤
I think amputee girls are hott.. is she looking for a man ?😊
You are an absolute sweetheart! The reason I clicked on your video is that I have just had a total knee replacement & I wondered how it would compare to that. 🤔. I really feel for you in the fact that you were just starting to heal & that you had another fall & landed on the worst possible place! I wonder if things would have been different for you if that hadn’t happened. I can’t imagine how you managed to survive when you first woke up & the epidural hadn’t worked! That would have been unbearable!! Anyway, you are an amazingly strong young woman, a great mentor for others like yourself & certainly have a wonderful attitude after what has happened to you 💕. I wish you all the best for your future ❤️. Cheers 😊💕❤️👏🥰😍☺️
The remaining question that I have never seen/heard and answer about is: Are you better off than you were with the fused ankle? Initial understanding was that the "reason" you chose amputation was to be better off than you were with the ever-painful fused ankle. So....was it a good decision? and are you better off?
I'm facing this, and if I go through with this I'm willing to let you know my experience?
Mine is a work related accident where I completely shattered my tibia, and crushed my ankle leading to 4 surgeries in the first month and 2 (one of them being the ankle fusion) more the following two years..
I am considering pushing for a below knee amputation to try and regain some freedom in life and from daily pain and lack of mobility.. the fusion has only helped with pain a small amount, mostly cause I had late stage arthritis from the initial injury. But it hasn't helped me with mobility, also pain with walking and uneven ground is still an issue
@@vaughnzimmerman1890 my friends going for this same decision, thats why im looking at this video and others like it
I think it was the mobility thing for her! She now can run for the first time since she was a child! I think she’s better off!
@@vaughnzimmerman1890 how are you doing today- facing the same situation myself after a MVA and several surgeries for a limb salvage
Thanks for making these videos It lloks like i am most likely going to lose my left foot. Yes, i am definitely scared, sad, overwhelmed etc but i am learning lots from a few of your videos! Thanks so much!!!❤
it makes me sad that pain of 1-3 is ok now. Happy for you that it's in that range rather than higher, but I wish it was 0. And I hope it will get there, early days yet really. Having said that, my fractured ankle still hurts a bit and it's just over a year, so I'm on a pain recovery journey too. Love to you, Jo, it's so good to see you looking so well again.
I'm glad you're back like I said before you're my inspiration I am a 70 year old woman black just had an amputation done in August of 2019 just got my prosthetic prosthetic leg last week doing pretty good can't balance myself yet but we're looking to do much better I give you a lot of things for listening I was listening to you a few months ago and now I know what to ask how to add when I go to the prostate doctor so thank you for being there for me without knowing it
I had my 2 part amputation May & June 2021 after 55 previous leg related procedures. I’m doing ok, my partner is my rock. My family however are oblivious did you find others feels so much harder than you thought they could be? Than you for everything you do I’m so grateful fit your bravery and honesty x
Jo, how does your daily pain now compare to the pain from your ankle pre surgery . That's the comparison that really matters . I appreciate all you do .
I immediately felt relief after my amputation. Phantom sensations were difficult but manageable. Getting my foot really help with the phantom sensations. Now I’m only getting them when I’m stressed or sick. Post op pain wasn’t all that bad. Honestly the worst was during a bout of osteomyelitis.
So nice to see you again, especially when you're smiling. Take it easy, though. Hugs! And say "Hi" to Brian !
I've been watching you for the last month and a 1/2 I am looking at maybe having to get my leg amputated its the same leg as you. I received my leg injury when was shot arresting a person in October. He hit my telus. now I have no real function of my foot. Amputation is one of three choices that they're giving me. Not going to lie im scared, but your giving me help now. Thanks Eli.
L T Are you fucking kidding me?? This is a real person who might lose their fucking leg what the actual fuck is wrong with you fuck you.
@@LTLT900 you heartless piece of sh*t. Not all cops are angels but a huge majority do everything they can to keep US safe, including you
@@sarahfielding6577 I have deleted my comment.
@@SpyderT22 l have deleted my comment.
You are in my thoughts and prayers.
I had my amputation back in September. I was expecting it to hurt a lot more, but I only really felt the difficult part of it for the first week, and most of that was due to swelling from complications that arose in the surgery - being on blood thinners, I lost about a liter of blood and needed an emergency transfusion halfway through the process. I was knocked out the whole time, so I was only made aware of it from the surgeon after waking up. Once the swelling was gone, phantom pain is all I have gotten since, and very sporadically at that.
Followup: no, the nightmare was the sepsis that I contracted. According to what the doctors told me, it was a random cockroach biting me. I wound up in the hospital as a result, and due to me living alone, nobody found me after about 14 hours. The end result was brain damage due to passing out. Still recovering to this day, living in a medical care facility, waiting for the time to recover well enough that I can move out and start my life from square one. Wish me luck!
I feel you girl I been a amputee for 7 to 8 years and when I first had my leg amputated it was really had for me because I was only 5 years old at the time and I did not understand what it met and the pain was not too bad for me the first few weeks mine pain was about 4 to 6 it was not super bad but when when I was in 4 or 5 grade my leg started to get soo much pian the I couldn’t walk or even use my leg I had to use my crutches a lot but it was not soo bad because I could get around on crutches pretty good and I could not put any pressure on my leg but then in 5th grade I had a another surgery for my leg Soo I could put pressure on it and I won,t have any pain and it work it has been a year every sents I got that surgery and I have be going pretty good and I got my leg amputated by NF which is a disease that over well I don’t know how many people have it but yes
And it is really hard to be a amputee but we are doing a amazing job at it love you and your vids
W
I've a friend who is a postal carrier that recently lost her leg. Now I've a clearer understanding what she's going through thanks to your videos on your site. Wishing you best on your healing journey.
My best friend just lost his leg two nights ago in an accident. Looks like im going to be the one to care for him. Thanks for the information. Im studying all I can about what to expect.
I'm writing a romance novel where the main character is an amputee with a transtibial prosthetic and so I'm doing research into it and looking for those with lived experience. This video has been so helpful! I'm going to be watching lots more to grasp important info about those who have real life experience so I can respect the subject and give the character a relatable story with accuracy. Thanks so much for sharing this!! xx
Hi Jo, 5 weeks into a B.K.A. right side. I knew it was going to happen and started watching videos on the subject and came across yours. Really helped me get my head into the right way of thinking before the surgery, thank you. I went to see an acupuncturist after 3 weeks and lost most of my phantom pain. Went back a week later for round 2. Waiting for my next visit. Again, thank you for your informative videos.
Thank you for posting and being so vulnerable to share this! I am a Colorado Springs girl too!
Hey from a fellow Colorado Springs resident!! And thank you so much for your kind words! 😊
@@FootlessJo Really like this video. I am an RN and this was quite educational. In my current job one of the main focuses is pain control, and I have worked with several amputees. A couple of questions? Did anyone ever mention a rhizotomy (nerve oblation) for your phantom pain? Also has methadone ever been suggested (yes, methadone)? Opioids really don't work well for nerve pain -- it seems like you probably know that now. Methadone is very different. We use it a great deal for neuropathic pain and it works really well. A very tiny dose does wonders and it doesn't fog up your brain like oxycodone or dilaudid or any oh the others. Unfortunately there is a stigma attached to it. Anyways, you have a fascinating channel. I'm sorry your journey has been a physical and emotionally painful one.
Well there you are! Welcome back girl! For me the hardest was the first month, but I also had a debridement surgery a few days after I hit my 1 month mark. That wasnt too bad. I stopped taking my pain meds about day 21, two days after I came home from rehab. No pain meds after minor surgery either.
Now almost 8 months and 2 prosthetic legs later I rarely get any pain. My first leg was awful but I since I switched to my suction system and my k3 foot its much better. Stay safe and lots of love to you and Brian!!!💜
"It is very hard to get a prosthesis to fit the way it needs to"
I can see why. It really is amazing; your body adapts your legs specifically for you and your activities (for example, if you do a lot of walking your leg muscles will become structured for the pressures from walking, but maybe not for running or standing upright statically for a long period of time. The muscles also have to be unique to supporting your body weight). Mechanical things like a prosthesis don't have that kind of adaptability, so it takes a long time to figure out what the exact fit is to get a similar comfort that having the right leg muscle structure would get you depending on your activities.
I'm glad that you are back and I keep my fingers crossed that you will have fully recovered soon!
thank you so much for sharing your journey! my best friend lost her right leg also about the same amount as you this past sunday and i’ve enjoyed watching your videos so I can reach out and help her!
How incredibly brave and inspirational you are Jo. Hoping that you get a prosthetic that's as comfortable as possible🤗
So happy you are feeling better!
You are a very good speaker!
Hang in there!
Joe you’ve been though so many operations as a teen to now as a young adult. Your so tough, positive attitude & helpful. I really wish you a happy pain free life once adjusted to your prosthetic.
God bless you dear
Welcome back! So glad to hear from you, but definitely do what you need to do to heal.
I LOVE YOUR SMILEEEE
Hi JO! I fell off the loading dock at work a d had a Trimaeollar fracture. Had 3 surgeries and i ended up having an infection in the bone. So, after findi g out i can'y get rid of the infection i am having a BKA next fri. I've been watching your videos and i can honestly say "Thank you" so much for making these videos! I really appreciate you and you really are a godsend. I hope you are doing well. I'll be watching uour videos when i'm in the hospital. Take care...
I've heard that my condition, CRPS is very similar to phantom pain. My leg is tingling as I watch this video. I know exactly what you felt during those early weeks. It sucks. I'm glad the pain became manageable, mostly.
My first amputation was so incredibly painful, in particular, because they couldn't wake me up from the anesthesia so they flushed my system of all narcotics so I felt EVERYTHING!!! It was a right below knee amputation and it hurt like hell for weeks!
Hi Jo! Thankfully my experience wasn’t as bad as you. I had bilateral BKAs - my epidural didn’t work but I swiftly had nerve catheters put in which worked well. I also had phantom pain which mostly kept me awake more than caused me distress. This was controlled with lyrica. I am just constantly amazed how little pain is involved in losing limbs!
This is very helpful for me.. January i found out that they were unable to repair my foot anymore and so amp was the plan. - fast forward 3 months after consultations and confirming thats the plan and i signed the papers to schedule my amp, and the world went into lockdown.. all non emergency surgeries on hold.. so i sit waiting for it to happen.. slow torture. but knowing more details of how it work has kept me going. information is empowering.
Jo!
Just one thing for the sake of a smile.
I misheard you & thought you said your friend had a BALONEY Amputation!!
Would that make the person more HONEST?
love
Steve Holliday
🤣🤣🤣 that is funny!
So happy to see that smile again.
Oh, Jo, you look SO good! It's great to see you. Thank you for talking about this!
I'm not an amputee, but I'm in chronic pain since 2015. Had smashed my left arm (don't walk your dog and look at your mobile). I'm on pain meds every since. Tilidin, Gabapentin, Novalgin, Ibuprofen. Therefore I find your video very interesting.
Wish you all the best and I'm happy you're feeling finally a little bit better. Love from Germany
I think you said it perfectly Jo when you said that the pain was like a moving target the first few months. My pain was kept under control, for the most part, post surgery in the hospital. It really didn’t kick in until about the first full week after being home. And because I had been a chronic pain patient for several years and on narcotics as a result, I though that I had things under control and could handle the pain. Boy was I wrong. However, with the help of my wonderful surgeon, his team, and my physiatrist (pain doc), we found a regimen that worked. After a couple of weeks of being on the new schedule, things started to level out. I’m now 10 months post surgery and I still deal with a lot of nerve and leg pain due in part to the many socket issues that I continue to deal with. Oh, and about two months ago, phantom pain snuck it’s ugly self into the mix. Which is a different story unto itself. I’m hopeful that the TMR procedure I had during the amputation surgery will start to work in a few months, which will have a significant effect on the phantom pain.
Happy to see you again Jo! 😊💕 hope you are finally recovering and feeling better!!
So so great to see your beautiful face again Jo hope you feel better soon here! 🙌🏾😊💪🏾❤️
So glad to have you back!
Hey jo keep up the good work be healthy be safe👍
Calling phantom pain the zaps sometimes is very appropriate. Is what I call it, and still have the zaps (even with meds) 5+ years afterwards. In my case amputation significantly lowered pain level to about level of an electric shock. Is very manageable. Your videos are very good.
I am a bilateral BKA and have been for many years. I think one of the most important things you said is “everyone’s different”. In my case I had extreme, level 10+ pain post surgery and had to be in ICU for more than a week on both of my amputations. Basically knocked out until everything settled down. Like you I had to have revision surgery several times. i have daley residual limb pain for which I take pain medication, not every day, but often enough. I still have phantom pain usually several times a day. Mine feels like someone’s sticking a hot knife in my foot, other times it’s an electrical shock type pain. The only bright spot with phantom pain is that it is usually sort lived. One thing that really annoys me is when people who have never had an amputation thinks that phantom pain is fake pain, and it is obviously not. I’m on 3600 mg of gabapenton as well as a maximum dose of Lyrica daily and it appears that I’m going to be one of the unlucky ones and have to deal with it the rest of my life. I am a certified peer visitor and speak with many amputees, and everyone has a different experience regarding pain.
Thank you for your video it was very informative . I was just told I’ll be loosing my foot. I’m a disabled Veteran who’s already had 6 surgeries and it’s to that point. So I’ll be starting my journey.
Your hair looks gorgeous on this video :)
Glad you feel better and have returned. Stay well.
You are an amazing help and person Jo. Thank you for you words and help. 🙂
Hey jo! So.good to see you so glad your feeling better, have definitely missed your videos but I totally understand you need to look after you. great video as always 💜
Thankyou for this, l have to have my leg amputated below the knee, I'm in serve pain from my spine which I need another spine operation,
If my pain hits 10 i can cope if it goes pass that I'm in trouble, they won't do surgery on my spine until the leg amputation
Thanks for sharing my friend ❤️
So nice to see you back. You have been truly missed. So glad your getting better 💜
Thank you jo fo for putting up this information. For me it was a 10 because they put the cast on too tight and i had to wait 2 days to get it off. After that i had blisters that burned but docs gave me enough morphine that helped and it was up and down from there in rehab. Now i did slam my stump into the ground at rehab and then my soul left my body and never felt anything ever so painful in my life period. But by the end of rehab 1 month of it it was painful but bearable when i got home. It is now pain free expect for phantom pain that comes and goes. I am 1 yr and half out now.
Soooo glad you’re finally feeling better! Welcome back!
So glad to hear you're doing better ❤❤❤ I've missed your videos and yes I did just sing along to the outtro 😂
From watchingyour videos, you've helped me to understand to look forward to. I'm going in for this next month.
I so needed this video. I’m currently a trans metatarsal amputee / all toes, but my doctor is suggesting I look into an amputation below the knee versus 3" more of my foot amputated. Thank you for this.
I had an elective below knee amputation and I asked before the surgery if I could go home after, the doctor left it up to me. My surgery was at 11:00 and I was in my recliner by 4:00pm. I didn’t know any different and found out later that it’s not the norm to come home the same day. Had pain but it was manageable.
Has anyone else come home the same day and how did it go? Thank you
You are incredibly strong . I hope your joy is deep and never ending xx
It is different for everybody. I had a below the knee amputation a month ago, and the only pain I've had at all was some mild ghost pain the first few days, and some soreness now that I'm being fitted for a temorary prosthetic. But really no pain at all.
Fascinating to know that mirror therapy actually works. I remember seeing an episode of House about it and wondering if it actually works in the real world. I'm really glad it's been working for you.
So glad you are feeling better. Awesome video Jo.
Great to see a new video, Jo! I'm happy you are feeling better, and I hope you continue to improve quickly. Your videos are always informative. Speaking of the theme in this post, I'm reading a issue of Smithsonian from a few months ago that featured articles about pain. It is amazing to read how very differently each single person perceives and processes pain. One section in an article also talked about how mood can intensify pain, which makes sense - if you are feeling down or depressed, your pain level will typically be more acute. I was encouraged to read of the research that is happening to find better, non-addictive therapies, although it will still be a while before they are available. Not sure if you've ever talked about it, but how do you manage all the meds that you use, and what kind of research do you do if a new one is introduced into the mix?
Thank you for sharing your time and talent with us... You are awesome.😄
Hi Jo, I hope you're doing well. Just seen this video. I lost my left leg exactly one year ago as I write this. I was taken to hospital with the worst imaginable pains down my lower leg on the 26th March 2023. I woke up some time in April and was told that the DR had to remove my leg above my knee. I had a blood clot caused by sepsis. The details are quite vague. All I know is that they induced me into a coma and around a week later, decided amputation was the only option. I was so lucky not to have any pain at all. Clearly good meds. In fact, I had more pain on my right thigh after they had removed good skin to graft onto my residual limb. But I can honestly say that I don't really get pains. I do get twitches and sensations often, but not pain. I've been using a prosthetic leg for the past 9 months but now waiting to go back for a microprossesor knee which I'm excited about.
I'm 3 months and 8 days post right leg above knee amputation and the phantom and physical pain is still there. I'm losing my cheerfulness for sure.
I was in a motorcycle accident July 26 2020. I had to have my right leg amputated above the knee. I find your channel interesting. Amazing how joyful you always are lol. I'm not grumpy or anything but definetly not as happy as you seem to be. Keep doing what your doing! 👍🙂
I too had an accident that led to having my subtalar joint fused but fused badly in a crooked position and was chronically painful, corrective surgary made it worse and my job meant i was on my feet al day. I eventually was diagnosed with complex regional pain syndrome so it meant amputation may not help as one would think but i had had close to 30 surgeries that had fused every joint in my foot and that just does not work. I was suicidal from pain so they eventually amputatated. I can relate to much of what jo has said. I am many years down the track it has been complicated but i have never regreted the chiice i made to amputate. It became a threat to my health, i would have taken my life but it was like a rebirth. Now i am wheelchair dependant but i developed ms that has affected my full leg more than my amputated limb but that was just but luck. But one is that chronic centralised nerve pain is different to phantom pain but they can be managed. Earlier referral to a pain unit is the one thing i think should have happened and might have help both me and jo but not necessarily saved a crapped natural limb!!
Thanks for this vid. Very informative. I'm not yet an amputee but have advised one of my Dr's that I'd rather have my leg cut off than deal with the constant pain and having had a number of infections in my left leg, which has often led to sepsis. Been on various strong painkillers but no benefit. Preventing me from living any sort of life.
I like to use Mankoski pain scale. My doctors don’t know about it/don’t want to use it, but I find it great to grade my pain. I am not allowed to use painkillers. It is a struggle to manage the pain.
Had my BKA in Aug '23. Took pain pills for 3 days. After that, nothing. I also have some neuropathy. I've had quite a bit of Phantom pain though. That is weird. Still waiting for my leg to heal after 7 mos. I did not have a cast. I used an ampushield for a while. My leg skin around the wound feels like l fell & skun my knee, but I didn't. I have diabetes so that doesn't help with healing. My A1c went from 8.7 before surg to 6.4 now! I'm eating much better & it is working. Love your videos Jo ❤ Thank you.
I’m glad to see you are feeling better, Jo!
Thank u so much for making this video...I have a rare foot condition and was given a 50-50 % chance of saving my foot or losng my foot ...I really appreciate people like u letting me know what possibly could happen if I have to lose my foot thank u so much!! ❤
I just love how you are telling this story...
You are an incredible and so generous to share your experience. 🙏
so glad you are feeling better jo!
My dad just had an elective below knee amputation last week and your videos are helping a a lot with what to expect and what he is going though. Thank you!!
Thank you so much for sharing the information. It gives me a lot to think about.
It's wonderful to see you back here! I think 'going back' is a great way to start up again. You got me thinking about my surgeries (11 so far.) Without going into detail, in my cases resulted in a great reduction in my pain levels. There were certainly pain issues during recovery, but when I compare how I felt before to how I feel after recovery it all seems to have been worth it. Thank you and welcome back!
Hope your pain management keeps improving with Meds and physio and good prosthetics Jo. Thanks for sharing your experiences. It is strange how the mind works sometimes. Hopefully as more time passes, it may help your mind to adjust and releive Phantom Pain. 🙏🏻
Hi jo I can’t imagine the pain that you went through. I suffer with what I call severe back pain but listening to you and your pain is way beyond what I could deal with. I have injections in my back so that for a number of years I’m pain free. Thankyou for your videos it helps others that think their pain is bad but in reality compared to you is minor xx
I'm not an amputee, and I'm not sure if what I have even compares to the phantom pain you experience... I have peripheral neuropathy in both my feet, and it also is in the lower half of my left leg. I had hoped the nerve pain in my leg would go away after my lumbar fusion surgery in 2011, but it only got worse. I think the severe DVT in that leg attributed to more severe nerve damage(the iliac artery collapsed onto the iliac vein, which caused my entire left leg to clot.. mostly because I was discharged from the ER the first time I went with symptoms). The nerve pain feels similar to a "hot" electrical wire being jabbed, repeatedly into my leg... but, like I said, I'm not an amputee, so 🤷♀️
So good to have you back but take it easy. 💜💜💜
I missed seeing your radiant smile on youtube, so glad you're starting to feel better. 🙂
It's midnight where I am and going in for a right below the knee amputation. Pretty nervous right. Watching these videos is keep me from freaking out. I hope I'm making the right decision. I haven't walked in a year and and a half due to a dump truck hitting me head on while riding a motorcycle. 8 months before that I was in a pretty horrible fire that brunt over 55 percent of my body 3rd 4th 5th degree. My leg being the worse. I have fought infection after infection. Now my ankle is fused at a 30 degree angle and hurts all the time. Hopefully here in a few hours a new beginning of walking again will happen. Thanks for the vidios I've needed them.
They were never able to get an epidural in 4 out of 5 surgies for me and they tried a nerve block that didn't work too. I woke up screaming after all but one of the knee replacement surgeries. The cattle prod is a perfect example. Surgical pain thankfully gets better within a couple of weeks and then when you are doing physical therapy which is a total different kind of pain. Im glad that you are feeling better Jo. Im not sure if it's the same pain of having an amputation done. I always was curious about that. Glad you are back. 😊
So glad yur back and doing better. I just had a night of like the worst pain of my life. I got a stomach ulcer and man those things hurt. I never wanna be in the pain your talking about I wouldn't manage I think I would go insane
🙏🏾🙏🏾🙏🏾🙏🏾🙏🏾🙏🏾I feel your pain, Jo. You do what you gotta do with your surgery.
Good to see you are doing better, Jo. Hope it all keeps going up for you. Now don't push yourself too hard and only do the things you can handle. We're not going anywhere. Literally. My government has me on an 'intelligent lock-down'.
Funny thing about putting pressure on damaged bones. If done too early (as in the fracture or tear or whatever is still very much there) it can be damaging. Once the damage has healed a little, pressure will actually stimulate the bone to heal faster. I can imagine this is one reason they can fit people fairly early for a prosthesis. So, if you have a good doctor who says a cast can come off and you can try using your limb again (gently!), you should be able to do so and actually do it. In this case, using is healing. :)
While I've never had an amputation, I have had both knees replaced with prosthetics. The second one is giving me a few minor issues, (10 months after the surgery), namely occasional pains right through the middle of the joint. Since there is obviously no neural connection to the prosthesis, as that is where some small bits of bone were removed to fit the hardware, I asked my surgeon whether this was similar/related to what amputees know as phantom limb pain. He said, "It can happen." Interesting. I did not have/do not have that issue with the other knee, which was replaced 10 years prior. So, yes, everyone is different, and people can be different from side to side, or year to year.
Did you sue the restaurant that had the greasy floors that caused your fall... and also I'm not sure by your wording, but did the fall cause the issues that led to the second amputation or was it unrelated?
Is it an American thing to want to sue everyone? No disrespect intended, legit asking because I hear of Americans suing for seemingly everything. This would not be a law suit in my country, they'd just be like "well sometimes floors are slick so be more careful next time"
@@commanderrussels2612 well if the restaurant was negligent and didn't keep the floors clean or properly warn someone that there was a grease spill or that it was wet and you get hurt to the point of hospitalization why not sue and have the people at fault cover the costs of it.. maybe it is an American thing idk tho 🤷🏽♀️
@@jasminethompson8808 It seems like over a lifetime you'll eventually run into a wet floor though, and that Americans always attach big numbers to these law suits rather than just the medical bills. Like it isn't the 5,000 co-pay, it's 5 million pain and suffering for slipping and falling.
@@commanderrussels2612 my sister's mother-in-law slipped in a grocery store and now has brain damage and can no longer work and has lasting pain... that's definitely worth 5million for pain and suffering
@@commanderrussels2612 it's the same here in Sweden. we have insurance that pays really well, you can easily get at least 100.000-1000.000 SEK ($1 = 8-9 SEK) when you lose or injure a limb