The risks are too high *amputation surgery update* [CC]
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- เผยแพร่เมื่อ 25 ส.ค. 2024
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Should I move forward with amputation surgery again?
#Amputee #Surgery #Prosthetic
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MY STORY //
Fourteen years of pain and failed ankle surgeries brought me to 2018, when I made the difficult decision to become a twenty-seven-year-old below-the-knee elective amputee. This channel has documented my journey adjusting to life with a visible disability as an amputee, and continues to be a haven to discuss physical and mental health!
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lol you did it no shame but you did it
Nooooo not the raid
Who is the new black pupper? Love the 2 pups in 1 bed💜
It is risk, you show a lot of risk taking behavior. Hope is faith in the not yet. Exercise your intuition, and the imaginal, between imagination and intuition; not clairvoyance.
Explains why I'm so attracted to you, it's your beliefs in the capability of the survivor that you have always been.
It’s ok, the surgery won’t disappear if you don’t choose it. you’re making the best choice for you at the moment and that’s all that matters. If you make a different decision in 6 months or 16 years, you’ll still be making the best decision for you in that moment, and that doesn’t nullify your choices today.
This exactly. It’s not like she’s 65 and in a couple years surgery would be considered too dangerous.
If there’s no time crunch, then it’s fine to take the time you need to think things over, explore options, or just see how you do without it. And in 5, 10, or 25 years, medical advances may give a better chance for good surgical outcomes. Or there may be non-surgical alternatives altogether.
It’s all about figuring out what is the going to give the best quality of life. And sometimes, that means waiting and watching.
Thank you for saying this…..
Not only will it not disappear, in time, it may get better with advancements in practice and technology. Maybe bearing the pain for some time could lead to the best surgery she could get down the line.
Very well said.
I still struggle with consent in medical settings. They’re the doctor, they know best, right? I have been in many situations where my informed consent was not needed and it is terrifying, but it’s confusing and difficult to decide when you are given that choice. It’s especially hard when doctors brush everything off as anxiety because I have ptsd and am triggered in medical settings so I’m panicking while I’m there. I’m glad you are able to make that choice. I hope to get there eventually.
Doctors are not Always right... still humans, some think there are better but they are all cooking with water... worked 23 years close with a lot of them.... ask three Doctors and get four answers...
You have the right to informed consent. You also have the right to have a patient advocate. That's a person who is chosen by you to be there for any appointment. Many GOOD doctors will actually suggest bringing someone with you. You aren't alone in feeling this way; in fact it is the norm. If you don't know of someone personally; you can request a liason. I am my sisters advocate; she struggles with the medical jargon and has anxiety. And no, doctors don't always know best. That's not to say that you should ignore them; just do your own research and listen to your gut!! If it feels wrong; leave and get a second opinion.
Doctors are a human beings and most human beings are actually stupid, doctors can be very dumb, plus they dont know you or your life history so they are not usually emotionally connected to your wellbeing (meaning they dont actually care about you that deeply) and combine all that with whole roomfulls of lawyers to keep them out of jail when they make a mistake and maim or kill someone on accident, not to mention all the people who a doctor kills in the future (like they do a operation poorly and the person ends up disabled or dead or whatever) it's hard to trust people , but for me doctors are the hardest because they have my life in their hands.
@@thetobytatershow you're so right! If I had done what some of my doctors wanted i wouldn't have .... had even attempted to have children. Yes , my 1st child, Thomas did only live long enough to take his first breath. But my second child Jessica lives and I am a grandmother. My third child Jason lived for 4 hours . I'm grateful for them all.
I go into that situation as a healthcare consumer. I'm the boss and I'm shopping. The doctor is offering a product, and I can choose to purchase or not. It has helped so much!
I had braces when I was a teen. My teeth were moved too fast and that resulted in them being destroyed. So when I hear you talk about the pain and how your brain works through it I finally found someone who actually understands what I feel. THANK YOU!
In the end I will lose all my teeth from this and I only have 7 real ones left. I have no top ones left and I’m both dreading and looking forward to getting the last of them pulled. Lately I have been dealing with phantom pains where my top teeth used to be. I drank a glass of cold water the other day and I could feel my teeth again, and how they didn’t like cold stuff after the braces. It truly felt like they were all back! It’s not just with cold either, I sometimes can feel them there individually and also sometimes it’s just pain where a tooth was. I can’t imagine how it would feel with a much larger body part.
Jo, your are an inspiration to us all. Hang in there.
Would dental implants be an option for you?
I hope the repairs are at the dentist expense it was their mistake
I'm in the somewhat same boat. I had really bad teeth from the rapid growth, too small of a jaw and stomach acid from acid reflux. Unfortunately I got a blood infection from them and my already destroyed teeth had to be surgically removed all at once. Now I'm stuck with dentures at 26.
Its one hell of a rough road especially getting a set that fits properly but as scary and painful as it is, it's an absolutely amazing experience in the end. I can finally live without a constant pain (excluding random fantom pain and pain from other medical conditions)
Its hard to make the decision but I can tell you that you won't look back and miss it. I wish you all the luck possible and just remember everything will work out the way it was supposed to in the end 💜
Same here, but not to the same extent. I also took the decision to end the treatment earlier than the orthodontist would've wanted, and I couldn't wear the contention thing because they molded it completely wrong, but it's so frustrating to know that because of someone else's mistakes we are dealing with all kinds of problems. Thankfully mine won't lead to losing my teeth, but in the near future I'll likely have to do it all over again (hopefully with aligners instead of braces) and I have quite a few issues to deal in my daily life. I hope you can find the best solution asap because it sucks to have such problems in your mouth 😖
@@justanotherstory3027 Bless your heart. Thank you for sharing your story. You're braver than me and I'm so much older than you. I know that I should get dentures because of the multiple chemo has destroyed my teeth along with inherent problems; I'm terrified to go through this. Since I was a child; I've never had a good experience with dentist.. any advice?
“It’s not worth it”
A powerful realization. Knowing when the risk isn’t worth it is hugely powerful.
Sending you good vibes, and hoping your leg stops being such a pain 👍🏻
It’s always so hard to have to re-grieve when symptoms get worse. You adapt and adjust to one level of health and then when the level declines the grief starts again. I’m going through this as well. And it’s so hard when it’s pain and mobility.
I’m glad you’re doing well enough you feel you can keep going though! The chances of making pain worse is not ideal.
Thanks for the validation about grieving each loss as medical issues degenerate. Alas, I'm dealing with this again at 60 from developmental dysplasias. I find I can't deal effectively with the new level of functioning without acknowledging that it is is loss.
I find myself a little choked up when you said time is the most valuable thing we have because I'm feeling guilty taking yet another sick day from work. Yay chronic illness 🙄 But you're so right. I need to spend time recovering today. I'm not getting today back. ❤️
Time is valuable, and taking a day off of work only re-distributes the time into time for yourself. Get well soon ❤
hugs🫂
Looking after your spoons, pacing yourself, and not burning out is time efficient in the long run. Time you take now, so you can do things later is never wasted. Best of luck my fellow spoonie
That is such a difficult decision to make for anyone with chronic pain. I'm glad you have the power to choose where and how your future will go. Here's to hope and taking things as they come 💜
Geesh Jo, that's rough. I'm an above knee amputee that's also had phantom limb pain, phantom limb sensation, and residual limb pain. I had the biggest neuroma my orthopedic surgeon had ever seen. I have nerve pain, muscle spasms, and chronic pain still after all the meds I've tried- lumbar block injections, steroids, and countless of other things. Now, my next option to try is a spinal pain pump. I'll be having surgery in October aaand even though I'm extremely nervous about it, my pain has become intolerable at this point.
I truly hope your pain eases with time & other options become available that won't take an even greater toll on your body, mind, and soul! Much love ♡
Oh dear, you’ve had so much to deal with. I wish you well on this surgery.
Just wanted to pop in here to tell you about my dear friend, a below-knee amputee, who has a spinal pain pump and has had great results with it. It's by no means a complete fix, but the way he describes it is that his pain went from unmanageable with no quality of life to manageable with much better quality of life. He still has chronic pain, but it doesn't dominate his life the way it used to. He couldn't sit through a movie before, but eight months on, he can wear his prosthetic long enough to properly enjoy taking his dog for walks and is making great progress with his physical therapist. He told me the biggest thing is that being able to bring his pain down with the pain pump has made it possible for him to do other things (like physical therapy) that improve it further, over the long-term.
I hope this is helpful and that your pain pump is even better for you than his has been for him 💖💖💖
@@muriel5826 I appreciate that, thank you! I hope you are well & staying safe!
@@chronicallyfabulous88 I truly appreciate your response & your kind words. Thank you for letting me know about your friend & his journey. I have been extremely hesitant about it & put it off for 2 yrs. This year, my pain became intolerable & unmanageable by meds through pain management. Quality of life has def had a significant impact & has slowly become little to none. I still push each day but it's a true struggle.
I hope your friend has increasing & continuous success along his pain management journey & in life overall! I also wish you the best in life, at whatever point you may be in ♡
Take care & stay safe!
Surgery and big changes can be scary but it'll be better on the other side. I wish you well and that it goes okay
I have started wearing lidocaine patch, under my gel sleeve. It has helped instantly. I just put at the spot, you know you touch it and get a electrical shock. Might want to try it, the prescription comes 30 patches. And very cheep.
Thanks for the info. You have given me hope! I had RBKA on April 18, 2022 and then fell on my residual limb. It was purple for a while but now the end of my tibia is still bruised and painful. Trying to get used to a prosthetic leg is not fun, but they want me to walk even though it hurts. I have been with a silicone disc and socks but it still hurts and is discouraging. I will call for a Rx today!
I used the patches on my back before surgery. Very helpful! They last 8 hours and work. I used over the counter ones. Lidocaine cream didn’t work for me
@@Liz_678 I might ask my doctor for that for my back. I use voltaren gel (higher rx than otc, and it's expensive) so that I'm not constantly wrecking my stomach with pain meds, but I can't afford to keep doing it this way. I almost feel like I'm trapped between a prohibitively expensive surface option or chronic gastritis.
@@limalicious voltaren didn’t work for me. I bought over the counter lidocaine patches. Generic brand. The patches worked best for me creams didn’t. One aleve and one patch helped for 8 hours for me. I was in excruciating pain from nerves being compressed due to spinal stenosis , tried the cortisone shots and they helped for a while. I have had two spacers put in. Best thing I ever did!
Yeah you can get lidocaine patches without a prescription. I got a tiny pack of them to get vaccinations two patches for 5 bucks the second time I just had to go up to the pharmacy counter and ask the pharmacist for a box of them, my doctor handed me a script to request them the first time, so you can probably ask your pharmacist if they have lidocaine patches that can be purchased without a prescription
The best part about choosing not to have the surgery is that you can always choose to have it later. You can't really undo it if you choose to go ahead. It's also great that you have multiple providers to get opinions from!
I can’t express the amount of joy I get from your content. The unapologetic authenticity from you is so rad. I’ve told you before but your ability to affectively communicate is incredible. Love ya and thank you❤️💪🏽
@Alistair Balistair Hahahah wow you salty because of an opinion? Ya gotta throw shade and it's unfortunate you have my empathy.
Not that you need my edification, but it sounds like a solid decision to me. I’m proud of you. Know you make my chronic issues more bearable. Thank you
"Don't just do something, stand there!" If it isn't *necessary* to act at this moment, sometimes deciding *not* to act is the best choice. See how your situation and your options evolve.
I remember the exact moment my idea of medical consent changed…
I was always a “doctor knows best” kind of person. When they gave me options I always asked “what would you do in my shoes” and went with whatever they said. (Backstory I have been struggling with kidney disease since I was 18 months old). Then one day, my specialist recommended we try a new med. It required intense monitoring, weekly visits including blood work for the entire year I would be on it. 52 office visits and 52 lab visits gave me pause, but the doctor was asking like he was giving me Tic Tacs. He kept saying things like “I’ve taken this med. I’ve prescribed it many times. Blah blah blah.” I go home and do some research and find out it can cause severe and it was briefly taken off then market after a few patients committed su*cide. I asked him about that and he basically claimed it wasn’t the medications fault, that they were likely already depressed because of their illness that was probably “way worse than” mine. I ended up taking the med and was miserable for 3 years. The side effects were horrendous. The back and foot pain, two side effects he didn’t mention, were so bad I was bed ridden and immobile. 2 years after stopping the med, and I’m still not 100%, maybe 75% what I was.
The way he pushed the med and acted like it was nothing changed me forever.
Hey Jo!! I know how you feel about surgeries. I’ve had 20 so far and I’ve been a T1 Diabetic for 51yrs. I have foot pain because I have Diabetic Neuropathy. Sometimes I can’t sleep because of how much it’s bothering me. I’m on meds but the next day all I do sleep because of them.
I remember what a diabetic said on Facebook once and it’s spot on. “I want a vacation from my diabetes “. And it’s so true. You just get fed up always dealing with new things.
For instance, my kidneys work at 42% and my last new thing to deal with is, kidney stones.
It’s so true a vacation from a life of medical procedures would be great!!
You’ve made a wise decision about having another surgery. You have been through life changing events and you need time to recoup before anything else happens.
You take care Jo and you’re doing great!!🤗🥰
Hello, I've followed you for a while now. I'm 3 years out from a traumatic hand hand amputation as a result of a car accident where my left hand got crushed and de-gloved. I completely understand the nerve and phantom pain! I have a spinal cord stimulator implanted to help with nerve pain. It doesn't completely take away the pain, but it does help. I'm wondering if you have heard of these and maybe that could help. I'm sorry you are going through this right now, alo and with everything in your personal life! Stay strong 💪
Roughly every 7 minutes, another doggo enters frame and piles themselves onto the dog bed. At this rate, Jo's house will be stuffed with pups in approximately 8 hours. Edit: Approximately every 9 minutes, ALL DOGGOS DISAPPEAR! 😮
Very interesting update, Jo, and as always I appreciate you being open and willing to share your journey with us. I deal with nerve pain myself that seems to come in cycles, and my prognosis is similar to yours - surgery is a coin-flip to fix it, whereas living with it probably won't make it better, but it also might not get any worse! As you said, it's all about staying inside yourself and listening to your body, being grateful for what you have, and forgiving yourself for the things you can and can't do on any given day ❤
I suffer from Chronic Pain related to spinal issues. After 35 years of trying various treatment options, I have opted out of any further surgical options because of the 50/50 chance they have of providing more significant relief. Good luck with your continued healing. Blessings.
I have spinal stenosis. Pain was excruciating. Had spacers put in. So glad I did.
I’m with u. By chance is the 50/50 the chances on spinal fusion? That was the chances I was given oh 15 yrs ago. Just looked it up again and shocked to find out it’s still 50/50. I just wanna know why hasn’t improved for so many years. Options are limited and pain is depressingly chronic
I know you don't need to hear this from a random stranger on the Internet, but I think you're absolutely making the best decision. You have so much medical experience and understanding of your own pain. You have gone through A LOT recently. Thank you for walking us through your logic as it helps us also see an example of how to think through a tough decision.
It totally makes sense to be concerned about choosing surgery and your pain getting worse. The thing about not choosing surgery at this moment in time is that 1. You will likely always be able to choose it if your pain gets worse or you decide it's worth it, and 2. Future surgeries available might be better able to address your pain and/or come with less risks. Good luck :)
Sounds like a very reasonable decission. I'm hoping that things will turn out better without another surgery! Hugs from Munich/Germany
It’s funny how individual responses are. For me, “no hope” equates to “no torture,” and it’s a relief to simply accept what comes without comparing it to a hypothetical better present.
what you're saying about hope is so important. you have been such a comforting and sisterly presence for me since I was a little fourteen year old trying to understand that it wouldn't get better. im so so grateful that I had one adult person to be there for me like this.
As someone with a chronic illness/disability your view on the future and living in the moment is really helpful and inspiring! I hope that you are doing well and continuing to do what you love
“Fingers crossed, please Universe, God, whoever you are..” I love your energy, Jo. That made me chuckle out loud. I hope the pain levels out so you can avoid this surgery indefinitely.
As always thanks for keeping it real Jo. This whole video reminds me of the headspace I found myself in after I broke my neck. So much grief and loss and the knowledge that no matter what I couldn't magically go back or just "fix it" and yes in that moment hope seemed a world away, I've also lived with constant chronic pain from that day on and absolutely understand the impact that chronic pain has on mental health. Wishing you much love in your current situation. No matter what, please remember that you are never alone, we and so many others are here for you all you ever gotta do is say the word.
It sounds like you're making exactly the right decision under the circumstances. This will always be an option in your pocket if it starts to make more sense later.
My little sister had a surgery a few years ago when she was 10 (crazy to think how young she was.) It was a minor surgery that was supposed to straighten her leg, but somehow her peroneal nerve got damaged. She couldn't feel her foot or lower leg at all except for excruciating pain, and she had to have her foot in a medical brace for 6 months because she couldn't move her ankle at all. Three years later and if you touch her leg wrong she still shouts "nerve damage leg, be careful!" because it still hurts her. After seeing what she went through, I think nerve damage/pain is probably one of the worst pains you can have, and I think she's still in a large amount of pain even if she doesn't realise (sometimes she limps or drags her foot without noticing.) My dad also has severe nerve damage/pain all over his body from where he broke his neck 40 years ago, and sometimes he can't move at all. Thank you Jo for sharing your experience. Not enough people know about nerve pain or how bad it is.
It can be excruciating. Try over the counter lidocaine patches. They last 8 hours. They helped me before surgery
I was having a hard day cause I was stuck in my head about how my chronic pain is only going to get worse and how I am losing more of my mobility each day. But then I watch your video. It is so comforting to know that other people feel the same way. As you said I only need to think about how I am going to handle today. So thank you so much for making videos. Thank you!👏🏻🙏🏻🙌🏻💙
It’s really incredible to see you trusting your gut, setting your own boundaries, and working with what you’ve got. Knowing when to maximize and when to rest is a real skill. Well done! You should be really proud of yourself❤️
I really have to thank you. I'm a wanna be writer and I have a character with an amputated leg. I was about to axe the leg part simply because I didn't know enough about how it was to deal with that situation, and I felt to uncomfortable just asking people who are dealing with it questions, then I found your channel. It is not only informative and interesting but I feel like if I ever get this thing written it will be better because of what I've seen here.
Big hugs to both you and your pups. My sister has a similar attitude as you-take it one day at a time and focus on what your body can still do rather than on what the future holds and what you have lost and may lose even more. At the same time she’s making plans for worst case scenario and shifting her skill sets accordingly. Tricky balance. Sending good vibes your way, Jo.
Much love to your sister! I'm still struggling to figure things out myself... 😔
Thank you! That is kind of you. ❤️
Thank you, Chris, I needed to see this. I am having a very difficult time at the moment.
Love from Canada. You are so strong Jo, and I love hearing about your experiences, and thank you for educating so many people about what being an amputee is like. ❤️❤️
Jo, i believe you made the right choice. As a fellow amputee, It was you and your channel that help me with my transition. Back on my feet, still getting stronger and doing things that I used to. Thank you and I am still praying that you continue to be an inspiration to us folks who are missing limbs. In short terms, I feel ya Girl !!!!! Keep rocking..... This AMP LIFE not so BAD lol
You hit the nail on the head for me when you spoke about hope. I genuinely look at your experiences as aids to thoughts about life
Greetings Jo! As a recent double bn amputee, your videos have inspired me during some dark times. Big love and light to you!❤️
Thank you so much for this video. I am seeing my surgeon next week to find out if I will be getting a double ankle amputation. And it is something I begged my surgeon for. And I am terrified. But I’m not able to do anything. I’m in constant ridiculous amounts of pain. And it’s driving me nuts! But thank you so much for another honest heartfelt video. It means so much.
Jo, there is some very early stage research being done on the use of stem cell therapy in amputees. Stem cell therapy is not new, but the application for people missing limbs and how it can help with skin tissue pain, and maybe nerve pain is now being studied. You might actually find a study you can be part of!
I sincerely admire your positivity, self-awareness and authenticity. I imagine, though, that we usually see you at your best, because it'd be tough to make a video when you're feeling extra crappy.
I want to say two things : First, it's OK to feel crappy when life is a heap of crap. Second, I'm sending virtual hugs for you to use when you need a hug. (I know it's not the same as the real thing, but it's the best I can do from several thousand miles away.)
Thanks Jo for both informing me and inspiring me as a new amputee.
I so appreciate the fullness of experience that you bring to your videos. There is so much pressure to be able to be willing to do anything for a chance of lessening our disability. Sometimes sticking with a current situation, however unpleasant, is the best way to care for oneself!
Congratulations on making your own choices 💚 "better" is subjective. You've had a LOT of stress, I hope that your nerve pain has reduction with less stress ❤️
It is good to hear fom you again. I've ralized how much you have helped me copeing with my own crap, through you videos. I have come to think of you as "my knowing friend" that tends to speak to the stuuf i struggle with. It not the "ohh atleast im dont have..." or "compared to Jo i have it easier" but more the "remember to think it trough" or "this it not going to work for everybody, so please research it"
Your vids has changed the way i look at things and myself, so thank you for having the courage to put words to the hard things in life. I dont know how many you have helped, but you have helped me, and that means the world to me
You have been through so much, my respect and admiration, you are an amazing girl. Been totally honest, it makes me upset that you had an amputation because of living with unbearable pain for so many years to live a painless life that was not the case. Your doctors should have warned you with the worst possible senarios and that you could be faced with living with chronic pain:(
Watching this as I heal from top surgery. I wish you well and hope no matter what happens in the future, things are as good to you as possible
I absolutely understand what you are feeling, saying, & thinking. The "what ifs" about surgeries scares me more than having it done. I have severe advanced RA. The pain is mind numbing at best. I do my very best to not let on it's there like it is or take it out on others. If I didn't stick firmly to living in the here & now, I'd lose my mind. My biggest fear about the many surgeries I have put off is one could leave me paralyzed & the other three could lead to an amputation of my feet or one leg with the foot. Rejection is big as the nature of RA is not to know a good guy from a bad guy so it goes at everything. Mostly the good guys. Implants & replacement joints are good guys. But I have to decide very soon so I can stay walking at all & most of all, driving. That's one freedom I have left that is not bothered much by my situation, only the confidence to go very far, have to walk, get back in the car... blah blah blah. I just want to keep loving life & making the daily fight with excruciating pain worth it. I will only get worse but the surgeries can help the damage that's done. Being disAbled means making these decisions you & I are talking about. Hang tough! Life is all about choices.
I have the exact same mindset as you when it comes to surgeries. I am struggling with a similar injury to my ankle(not as severe as yours was I think). I have been to several surgeons and they are all recommending ankle fusion. My worst fear is that I go through with this surgery and lose mobility only to have no improvement in pain or god forbid make things worse. But right now I'm so limited in what I can do that I feel like I have to try anything and everything. While my situation is unique, Its helpful to hear you talk through your experiences and challenges. You have been a big inspiration to me during the last few difficult years, thank you Jo!
I was at this point recently. I have patellofemoral pain syndrome, which on its own is very treatable with physical therapy. Unfortunately, I also have chronic fatigue syndrome which is a condition that gets worse with even mild physical strain. Basically my two options were continued pain and the possibility for subluxes of my patella, or the possibility of worsening my fatigue. Right now I'm just barely above housebound because of fatigue, I can stand for about 10 minutes and sit up for about 60 minutes, and am able to attend a few college classes at a time. I made the decision to go on NSAID pain medication long-term for my knees and keep treating my fatigue with rest. It was a difficult decision because I know my knees might get worse, but I also knew it would be too risky to try to get them better.
Finally someone said it. I felt so alone that I haven’t been able to do PT. I am pretty sure I have CFS with EDS and PoTS (my dr at least believes the last two…). I used to be an athlete and now I’m a cane user most days partially bc I have No Energy for PT! I don’t have energy to sit upright most of the time! Hopefully we both find something to help both problems.
@@HaydenHaystackArts yeah it sucks to have two conflicting conditions like that
I'm currently at the stage where there are no more options I haven't tried. My current baseline (or worse) is probably where I'll be for the rest of my life and it's hard. But you are helping me feel less alone in this. Thank you.
THERES ALOT OF US THERE......
MANY SUPPORT GROUPS YOU CAN REACH OUT TO....
Your sweet pupper “melting” out of the bed in the background made me faint with adorableness! ❤️
Hey Jo, I'm so sorry that you are faced with another difficult medical decision. I have been looking into the Spero clinic for myself as they deal with nerve pain in a non-invasive way I'm not sure if this is something that would be viable for you but I just thought I would mention it just in case :) sending love. I totally agree with what you said at the end hospital's become harder the more you experience:p
I’m living with chronic pain due to arthritis and have both hips replaced and several foot surgeries. It’s good to hear the stories and decisions of others. I don’t find surgeries to be difficult so I’m always looking for ways to reduce pain & surgery is one of those options sometimes. And your dogs are gorgeous!
That is completely understandable, and as someone whose has chronic issues that I've had to have surgery for, I have chosen that option too. I can live even if its uncomfortable. One day at a time 😊
I am so proud of you for knowing you are the one having surgery, not the doctors. And you can make the best informed decisions for yourself, no one else. My situation no where near as serious as yours, but I'm going on 70 and just had hip replacement, good results some ways, inconvenient results other ways. Am having a much longer recovery than expected. Hip is fine, the foot stl recovering. I would still have mine done, but, of course, this is in hindsight. Will be praying for you and decisions that need to be made.
I deal with fibromyalgia so know what chronic pain can be like. When you talk about reframing a smile crept across my face as this is exactly what I’m working on rn. I’ve been learning about stoicism and about accepting what I can’t change and changing the way I think about, therefore feel about others. You are so strong and brave. Thank you for sharing your experiences and being so honest ✨🥰💕 much love xxx
It’s brave as heck to say “no” to the “next medical treatment “. You’re taking a stand for you. Thank you for sharing, and you are right on staying in the now 🫶🌸
I am not an amputee, but I do deal with chronic pain. I look at you, and am awed by your courage, strength, and determination. However, I'm also 60 years old, and I might have advice that could help here, because I've had my pain (three compressed lumbar discs) since I was 19 yo. So, here are some thoughts: a) Always maintain control over what is done electively and non-emergently to your body. Never forget that the surgeon gets to go home at night, no matter what happens to you on that table. (And no, my doctors have been fantastic; but I've worked in medicine, and I've seen what can happen.) B) Because you are dealing with chronic pain, make sure to explore all holistic and naturopathic options open to you. Yoga has kept me off a surgeons table all these years; I do have pain, but I have kept my mobility, which I would not have if I had let them fuse my spine. C) You can keep surgery as an option. Your doctors are always there, if the pain gets to be too much. And D) is maybe the hardest one of all -- you may have to accept that pain will be part of your life for the rest of your life. When I injured my back, my doctors told me that it not only would never come all the way back, but eventually get worse. To say things got dark for me, is an understatement. But I have learned to live with my pain. After awhile, you can judge accurately just what you can get away with, and will know when to ease off and rest. And it is quite possible that, with time, your body may adjust and stabilize in a way that moderates your pain. My back has done that; maybe your leg will, also. I hope for your sake that it does. Pain is no picnic. I hope some of this helps. I send you love and light, beautiful soul! Namaste.
Something I’m still figuring out is how and when to do things to help my body and my brain keep going, to the next task out the next week. Choosing not to do the surgery can be a big move but if it’s the right thing for you and your body then it’s the best you can do and I’m glad you can make that deduction ☺️. I’m guessing these longer videos take more time and energy to make but I do miss them ☺️. Shorts are fun too and funny so thankyou for that Jo 🥰.
Hello Jo, I feel and see your racing mind and emotions in this present situation. I believe it's taking a toll, as I look at your shadowed eyes, which have not been like this, to me, before. It's so bloody hard for you, and still you choose to maintain hope and fortitude. That is just awe-inspiring, Girl! Thank you for being you and sharing so openly and honestly your path and life.
I wish my own life situation would allow me to support you financially, but it doesn't at the present time.
And, it is just so positive that you've decided on the more challenging road of wait and see, basically, without clear black and white. I think that's hard for you. So bravo! That takes a new kind of courage from you! And remember, you can collapse in a sniveling, wailing heap sometimes, with no other significance except that you need to. Sometimes, it the mind's way of slowing you down to recuperate. Pardon me please, for being so direct!
Wishing you much love and kindness for yourself; from yourself; and to yourself. Out of that comes renewed strength, too!
I love you. Thank you for your honesty. I have a neuromuscular disease that is making my muscles waste away. I fall more than most because I have foot drop. I've got nerve and muscle pain and I've had this disease all my life. Listening to you share your story, I understand that we are not alone. So let's just keep on keeping on, do the best we can with what we have, and never lose HOPE!
Sounds like a “The Devil you know is better than the Devil you don’t” situation! Wishing you the best!
I am sorry that your in pain! If you feel that the risk is to high, listen to your heart! Sending love and virtual hugs from Philly❤❤love you!
Glad multiple opinions regarding surgery and alternative treatments will be done. Medical professions are rooted in science of course, but there is also the "art factor". Different people, different methodology, different techniques, it is all out there. Good for Jo seeing ahead intellectually even without extraordinary extrasensory perception.❤️
I’m sorry that you have such a difficult decision to make Jo. I completely understand your decision not to go through with the surgery at this time. All my love from 🇬🇧.
I love your dogs snuggling up together on one doggie bed. Such sweeties!
God bless you, Jo, you’ll be in my prayers!!💗
It’s sounds like you have made a good decision for yourself. I’m sorry you’ve been through so much in recent months; I’m right there with you.
Oh, I do have endometriosis and had the same thoughts going on. "What if it never gets better and I will always have to live with this certain pain level?". I went to the clinic again, they found nothing. I got to change my medication and it got a lot better. I still struggle with pain at times, have to take care of my diet etc. It is not ideal, but you learn to deal with it and to advocate for yourself. I wish you the best! You will find your way :)
I find it so admirable how well you are able to put these very complicated thoughts and feelings into words to explain it to us. You are so eloquent in expressing your thought process about this. All the best Jo, you're even stronger than you realise.
OMG, she gets paid for the drama...
I love that you talk to your dogs in the same way I do, the Pet Quota™ is very real
Dang,
This sounds like a tough choice! But yes the idea of ending up in constant pain would be immense Jo!
If you get to a point where it makes sense to get surgery I hope we can be there to support you through it all!
I don't know how or why one of your short videos showed up in my feed but I'm so thankful. I really needed it. I'm dealing with so much pain and swelling in my left foot and concerns that I may loose my foot at some point. Doctor's can't figure out just what all is going on with my foot other than a couple of Morton neuromas. There is something else going on with it. I had an open wound for about a year. I just wanted to say thank you for your channel and letting me know I'm not alone on how I feel and being scared and mad and depressed.
Random interesting thing I just so happen to notice; I like how your dog just up and vanished after you posted the word clairvoyant on screen!
I also have medical trouble and your honesty makes me feel better. Do the best you can with what you have take care of yourself
I can totally relate to just wanting to have control over at least one decision. It seems like you have made the right decision for the point in your life that you're in, and the great thing is is that if you change your mind you can still have the surgery later if you feel it becomes worth it. Wishing you all the best
Thank you for reminding me that hope is important. I lost hope years ago due to a bad relationship. Since leaving I've struggled with everything and i couldn't figure out what I needed.
I'm glad your doing your best and still making content 💙
NOT fully Realizing things until say out loud… that resonates. Thanks for sharing. Surgical decisions are tough when there are so many unknowns. HOPE. Hope, that while you’re waiting, our understanding of nerves and nerve pains continues to improve and you have more options.
Jo, I really needed this video today! I have spent the last 10 years having surgery on my brain and spine to try to improve my quality of life and have had a rough go of it. I am at that fork in the road right now too where I am facing a huge surgery with a 20% risk of leaving me paralyzed if I survive at all. Im having to make the opposite decision at this point to save my function, but sometimes we just need to be reminded that we actually have a decision. Going from surgery to surgery to surgery for years puts you in a mindset of “everything is worth trying to fix.” But no surgery is a minor surgery and everything poses a risk. The more surgery you have to more you understand that. Thank you for the reminder that we can take a step back and evaluate things on our own and that we do have autonomy in this. We do have a choice (well, sometimes) ❤️
I applaud you for stopping, contemplating, thinking rationally and making the decision that you have come to realize is best for you. Bravo!
Jo, I really hope the cosmos dishes out relief in some form for your ongoing pain and mobility issues. 💖 I do a lot of reframing these days, thanks to a crush injury / near-amputation of my extremities a couple of years ago. Pain, tingling, stiffness, and other nervy nonsense are my constant companions, but I've gotta be grateful for the digits I've still got, even when they're misbehaving.
i appreciate your video blogs, you are one brave and courageous cute woman, keep up the good work you are doing opening peoples eyes to your life and struggles, having a blind daughter and raising her with my wife was hard but we got through it, always making sure nothing is left out for her trip over, buying a guide dog to walk her to and from school and giving hr some independence, teaching her how to ride a bike and ride toward the bell, taking her running with me each morning was a task but she enjoyed it, I'm sure you have had your own struggles since you lost a foot, but here you are as brave as you are and still giving us a laugh at your expense sometimes, so keep up the good work there are many of us who appreciate you.
The pupper melting out of bed while she's talking ❤
Oh Jo, my momma heart wants to hug you and tell you how awesome you are. Be happy and adventurous🥰
As a fibromyalgia sufferer, I came to the point of excepting some pain, without relying on pain pills to get by. I know it sucks, and everyone deals with pain differently, but you eventually have to adapt to the situation. And yes, I have my moments of frustration. I hope the best for you and our fellow pain sufferers. 😘😘😘😘
Hey I've also got fibro (still somewhat new to me and I'm really working on finding what works for me) what kind of pain treatments have worked for you? I know that different people find different things helpful while for others it won't do anything so I like to ask anyone I can. Especially because standard pain killers do nothing for my pain levels
Thank you for this. Living with chronic pain for me has been the same way. Overcoming that urge to spiral is a constant battle when you start thinking about the reality of it. And you're absolutely right, we have to take it day by day and respect and honor our bodies. As hard as it is. That compassion for ourselves is what will help us get through whatever may come down the road. I appreciate your effort to be real with yourself and share your story. It is immensely helpful for others who are also having similar experiences, whatever they may be dealing with.
Hey, I'm "almost footlless Joe". I worked police dogs for almost as long as you've been alive, and I had so many sprains and fractures in my right ankle, I had to have 2 resections of the tendons(on top of already having several fixation screws) that the last surgery was total replacement of the ligaments with allograft tendons. I was lucky enough to get the best foot and ankle surgeon in Texas(did all the surgeries for the Cowboys and Stars). He told me before any surgery, that scar tissue and nerves looked identical during surgery and that I was going to have nerve damage, nomstter what and even apologized. I took my chances. He was right. I ended up losing the feeling on the outside of my foot and my 4th and 5th toes. He referred me to a spectacular neurologist that basically told me I could deal with it for 3-5 years, at which point it woukd probably resolve, or I could have an ankle fixation or BKA. The second of which he advised against. I can tell you that after 3 years of a less than reputable "Pain Management " doctor(who is now in jail) and another 2 years of absolute misery(because I refused to take any more pain meds, I have a great life. I still have occasional nerve pain, but it's nothing close to what I was told was RSD and probably permanent. I lost so much during those years, including a relationship. My original surgeon was right. 3-5 years down the line, the nerves corrected themselves (for the most part) . It does get better Jo. I know it's hard and it absolutely sucks somedays, but your body does right itself. It just takes time. I wish I didn't have a permanent limp and I wish I could run! But I'm happy with my broken parts. You can do it and things will work out (I'm sure hundreds of people have told you that by now). Take care and be safe!
9:24 - Thank you. You seem truly thoughtful and full of hope. I'm glad to know of you. I wish you well.
I hope you're able to find an alternative that give better odds at success. But props to you for being confident enough to make the decision to opt out of your initial plans.
I have a left leg amputation below the knee. I have found relief from fantom pain with relaxation / hypnosis therapy. My wife is a Ph.D psychologist; she taught me how to mentally reduce the pain, no drugs. Just passing it along, I love your show.
Would love to know how to do this.
Choosing is important. Not being manipulated or forced or twisted into it. Choice is a key part of how we deal with outcomes.
I have fibromyalgia, and periodically the knowledge that this pain will never go away, and never get better, overwhelms me. It's mostly well-managed right now, but the pain can be a lot. I'm sorry that you're dealing with this as well.
I'm bedridden from a herniated disc, and i'm desperate for relief - it's been over five years, and i'm so excited for back surgery, which I should be getting in a couple months, and it's the hope I've been hanging onto.
And it's in a foreign country, and I don't speak the language, but it's the best of two options, by a long shot.
And this video reminded me how important this decision is for me, and how it's the right decision. Thank you
“It is painful but also doable.”
This is such a powerful phrase. And as someone with RA, Fibromyalgia, and now some spinal issues, this is how I try to view the hard days.
I wish I had had a voice like you when I was a teen with a fresh diagnosis, and it makes me so glad that amazing people like you exist and are willing to share your experiences honestly and genuinely, even when it’s the “ugly” side of disability.
Unfortunately with amputation it’s an on going battle and relationship. It’s that commitment of good and bad. The constant changes in your prosthetic’s, trying to keep good health insurance. Not to mention the types of pain. The less surgery on your residual limb I think the better and with less chance of revisions. But I know you still have to live your life everyday. If you get to the point where you are spending more time out of your prosthetic and in bed or from pillow to pillow then for your own quality of life try the surgery route. I wish you the best Jo ❤️
Having lived in painfor the last 35 years, you take your time.
Do what works with you and your doctors.
Sending prayers and high hopes.
As a fellow chronic pain sufferer- your hope comes in to play in a very different way than it used to or than able bodied peoples. My husband, bless him, is very positive. He doesn’t live with pain or mental health issues. He just goes through life like a “normal” person(typically, luckily and for now). So when we discuss my pain he hopes that I get surgery and it fixes it. He says things like “even if it only made you like 90% better” and I’m sitting here like - that’s very unrealistic darling. Lol He has the most hope, but it’s different from ours. I hope for more good days than bad. I hope my good days fall on important milestones like our wedding, or my nieces graduation. I hope that medications help when I need them to. Adivan and Buprenorphine have been a huge help for me personally. Low dose and prn has been huge in making me a half way functioning human on the bad days. Our hope lies in our ability to see that despite the pain, life is worth living, it’s still a beautiful world, despite the ugly. Because how would you appreciate the sun without a ton of rain? And while we can be angry, and rage at our lot in life, for a bit anyways, it also lives in our heads with the positives and they can both be true. It can be unfair and fair, horrible and beautiful, painful and joyful, all that the same time. I have hope that you have hope, Jo. As always, positive vibes into the universe for you!
Hi, Jo!! I'm still here, still listening to you. I still look at the pic you drew for me every day. I still smile every time I look at it. I am particularly happy that you put as much effort and time into the pic as you did. It might not have seemed a great deal of effort to you, but it was to me. I grieve with you for your losses, all of them. I have lost furry friends and am divorced as well. I am heartened to see you pick yourself up and continue forward. Being as you are a part of my "den", if you need anything do not hesitate to ask. If it is within my power to get/do it for you, I will. All you need do is ask.
I think you made a right decision. You seem to get around good. Wouldn't want to take that risk and be in more pain. Love your videos. You are a strong woman.
This is the first video of yours I've seen, I'm sorry about their news, it sounds like you're making the best decision for it right now, and that no will give time to speak to others, get 2nd, 3rd, 4th opinions, make plans, not be hasty about it. I'll be checking out your other videos so I understand your story better. I had gotten spinal fusion, I had been dealing with a lot of nerve pain since I was a kid, so I get that frustration from the pain. So sorry 😞 💜