The risks are too high *amputation surgery update* [CC]
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- Опубліковано 2 жов 2024
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Should I move forward with amputation surgery again?
#Amputee #Surgery #Prosthetic
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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 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
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?
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
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.
"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.
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!!🤗🥰
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
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
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 💜
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!
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 💪
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.
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.
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 ❤
“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 👍🏻
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
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.
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 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 :)
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
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❤️
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.
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.
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
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.)
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.
9:24 - Thank you. You seem truly thoughtful and full of hope. I'm glad to know of you. I wish you well.
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....
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 🇬🇧.
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.
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!
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 love your dogs snuggling up together on one doggie bed. Such sweeties!
You have the best positivity of anyone that I know
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.❤️
God bless you, Jo, you’ll be in my prayers!!💗
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.
I honestly wish I could build a friendship with you Jo. You seem like such an interesting person and I really and truly appreciate your videos. I'm very happy to see how you handle this as it seems unsurmountable for me, an able-bodied person. I truly admire you, your courage and compassion when speaking is just so cool!!
Yes I agree there is only so much any person can tolerate especially with doctors, consultants and medical stuff
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
I love that you talk to your dogs in the same way I do, the Pet Quota™ is very real
“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.
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 :)
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.
I am hoping with you. Praying for you. Cheering you on. Things will get better! If there is one thing I've learned as well, dealing with my own struggles, is that we cannot focus on the future, we just gotta take it one step at a time. One day at a time, as you were saying.
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’m so happy for you. I know it sucks that your faces with this pain but the fact that you are able to step back and look at today I think is amazing.
I have some mental health stuff that we have learned is a chemical imbalance in my brain and there isn't really a way to fix it.
I totally understand how trying to look into the future knowing that you will still have an ever present problem is demoralizing. You really are taking a good attitude to it though.
I have found that outlook makes a giant difference and learning to accept your bad days and bounce back is a tough skill I am working on as well. It is all about focusing on your good days and just making it through the bad ones.
I've had dozens of surgeries. It's always a big deal. Parts of it start to feel routine, after a while, and the anxiety is less, but it's always in the back of my mind that I've been lucky, so far, and any time I go under anesthesia, there is a very real chance that I won't be waking up again.
It's good to take the time to decide if this operation is worth it's risks. It sounds like you are making a well-informed decision, and are making the best choice for you. That's very good. I'm proud of you. It sounds like you are making the right decisions, with the facts that exist now. Perhaps you will want to change your decision, later. Maybe a new technique will become available that improves success rate for this, or the pain may becomes worse, and you will make a new decision. But for now, it sounds like this is the best decision for you.
Jo, you are much wiser than you realise. I hope better options present themselves to you soon. You are amazing and an inspiration. Best Wishes from a supporter in Australia.
Thank you for offering validation to others. I am supposed to be working towards another surgery, but honestly I'm just not in the right head space or physical space for it. Making the best choice for you is the most important thing. You have to live with the results, good or bad. Again thank you for your advocacy and your videos.
I was sure I couldn't love you more, Jo. But your honesty in this video is amazing!!! You are fantastic!!! Absolutely fantastic!!! You're an awesome woman!!! I hope that your pain does NOT get any worse. I'll keep you in my prayers, Jo. You're amazing!!!! Much love from your biggest admirer!!!!! 🥰🥰🥰🌹
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!
I'm glad your doctors and specialists are honest with you. Out of the doctors I've had dealing with my health problems, I trust three of them. They have been honest, and aren't afraid to tell me when I mess up, and how to help things get better.
I hope you find a way to co-exist with the pain. Best of luck Jo.
I have been dealing with pain for over 22 years now and my answer was found in stoicism and how we deal with things we cannot change.
I liked what you said about hope with chronic conditions. I'm also a big believer in hope but have chronic conditions, and your words about respecting where you are at were really great.
As an RA sufferer, I totally get the feelings of chronic pain, the need for hope, and the feeling of being out of control and scared of the inevitable decline . We just have to keep taking it one day at a time and being present and making the best decisions for ourselves as we can based on what we know and the resources we have available currently.
For the record, you are making the right choice. There's just so many extra dominoes that could fall if things don't go well, at this moment it's just not worth the risk. Someday you may need to reassess, but for today, you're doing just right. Good for you!
There is some hope too...work on the grief and the other mental health issues. They do make a difference in pain levels, much more than you'd think...personally, I think there's so many things doctors have NO clue about how the intricate systems of the body work together and effect each other, but it is clear that a happier person has less pain than a less happier one.
I’ve never watched any of your videos before, and I don’t even know why UA-cam suggested this particular video for me to watch, but I really think you’re making the right choice here. I know I’m a stranger, and maybe it doesn’t matter for me to say that, but there it is. You’re making the right choice for yourself.
Oh, Jo, I'm sorry you're having to make a choice like this. Fellow chronic pain spoonie--I have EDS--and I know what it's like to decide between the guaranteed pain and the possibility that treating pain might make it better but also might make it (or something else) worse!
Your life so your choice, I hope it’s ok and it doesn’t get worse. ❤️
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
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
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
Sometimes the hope isn't that the situation changes, it's that we will change in how we deal with it. My hope is that you continue to build strength and strategy and continue to create the best life you possibly can.
First off I am not a doctor, but a patient like you that has been dealing with my own nerve issues. So I’m just going to list off a few things that have been tried on myself. First is a TENS device, it’s a great zero risk try. Second is they make A Lot of different nerve meds, trying different ones and different combinations, it took me three years to finally get some improvement. Last is some experimental infusion treatments, for some unknown reason ketamine infusions work on some people. I find fantom pain changes with no logical reason and for two people it maybe two totally different treatments work.
I have a leg injury involving permanent nerve damage and chronic pain. this might sound really silly, but I get laser therapy for the nerves, and also massage and acupuncture. the acupuncture actually helps ease my nerve pain and my lady really always knows just where to place everything based on how I tell her my leg is feeling. I don't know if any of that would help your stump, but I can really sympathize and am always happy to see someone taking the wheel when deciding about their health.
Hope in the wrong place can be so incredibly damaging. And I think it's not talked about enough. Best thing I ever, ever did was give up hope...
I spent more than a year with the only hope being getting the use of my sight back, curing the neuro condition with the right med, or finding the right painkiller that would let me use my vision without the extreme pain and other symptoms trying to use it caused.
The day a new specialist told me there was nothing more that could be done to fix my condition, or relieve my symptoms, other than the mitigation I was doing was probably one of the best worst days of my life. I could finally stop, finally have validation for not frantically seeking a cure and effing up my physical, and mental, health in the process and causing awful, and sometimes permanent, side effects.
It gave me a knew kind of hope, it wasn't quite hope yet, but it became hope. I got back some of the physical and emotional energy I had been pouring into a non-existant cure, and let me instead work on managing my day to day, and figuring out how to have the best life with what I had. And for me, that meant ditching most of the vision I was trying to use, and finding workarounds, white cane, braille, assistive tech. I still use the sight I have, but a lot lot less.
I don't know what the future looks like for you. Whether it gets better or worse, I hope you find a healthy form of hope, even if that means 'giving up' on some of the things, using a wheelchair more. Doing more stuff from home. Whatever it looks like for you. There is always hope. It's just that some hope will slowly kill your soul and destroy your body. And other hope is the hope of achieving what you want in your life in different ways from what you thought it would be. Only you know which fights are worth it. But this sounds super sensible and healthy. And it's a weird feeling, but it's better than destroying yourself.
Also, there is not nearly enough talk about medical PTSD, but obviously something scary and traumatic and really painful and unpredictable is unlikely to be something your brain is going to actively seek out for funsies.
This video was so important, thank you for making it
You’re awesome! I love hanging out and watching your videos. You are an inspiration,
You've got this Jo, you are truly a beautiful soul.
Lol, I didn't properly read your handle & thought your name was burnt nipples... had to share & make someone laugh 🤭
Everything that u have just said. Is what I think about every day. Thank u
Thanks for sharing.
I've had a few surgeries. The older I get, the more it gets like gardening. Where things don't exactly go as intended. The last one I had was to fix a herniated disc between the L4 and L5 with a brand new titanium 3D printed disc. Plus a fusion between L4 and L5. The amount of nerve pain on my left side, when I wanted to be active was nuts. It was unbearable. So getting the surgery had to be done. It did. I still have a little bit of nerve pain, sometimes, on my left side. It's not perfect. But it's made things a lot better. With more PT I hope to be okay with it. And be more physically active.
Lastly, when our cats demand pets, we call that the pet toll. :)
Prayers for you Jo!
I can relate. My pain is 24/7/365. My specialist / surgeon told me a few years back that surgery got me into this mess, surgery isn't likely to get me out - odds are greater it would just make things worse. So I wasn't even given a 50/50 prognosis yet still to this day, years later, I still second guess myself at times if I should have pushed more for surgery. But alas, I made my decision, I'm living this life now, there's no going back and living some other past fantasy life I've made up in my head of how things could have been doesn't do me any good.
Pain does get worse, as you know, but we are absolutely terrible at predicting how we will handle our future pain. If you had asked me about my pain 10 years ago and if I somehow could have truly understood it, I absolutely would have said this is unbearable. Yet here I am, bearing it and living the best life I can muster. We are much stronger than we tend to give our future selves credit for. It may not get better but that doesn't mean it will get worse, it will just get different. Don't worry though, you will grow as it grows. Hang in there.
Is there also the possibility that advancements in Medical Science will make a different surgery possible that will be lower risk (I'm not sure we will ever advance so far that there is no risk)? If so, your choosing not to have *this* surgery now, doesn't mean you've got to have this surgery at some point in the future where your current pain levels get so bad that the risk is worth it. Instead you could have some different/better surgery, which medical science doesn't have available today, that has a very low risk (and high chance of better quality of life) instead. That's at least what I'm going to hope for in your life.
Jo, I’m 100% sure that you’re making the right decision for yourself right now
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.
whatever you do, I wish you the best Jo
Definitely good to focus on the present, rather than worry too much about the future. Recently I've had a "diagnosis" of Functional Neurological Disorder to conclude my 2 year journey with neurological issues. No treatment plan offered, no further appointments. Just a "tick box" diagnosis (since all my other tests came back as clear), and sent on my way... I'm finding it difficult not to feel despondent, in that everything from now on (even a broken arm!) will be put down to having Functional Neurological Disorder :-/
I saw my chiropractor today for a regular "tune up" for my spinal and arm issues. We were discussing the pain and related issues and she said something really helpful. "Be thankful for everything you CAN do." So often with pain and disability the focus is on what we cannot do that her comment really turned my thinking around. Now I just have to remember it. Concerning the not thinking too far ahead, YES absolutely! Several years ago my Dad got onto me for not planning for retirement. I told him that many of our family live into their 90's. There is no way I want to think about living another 30years with this pain, the last 30 have been hard enough. Living in the moment is much better for my mental, emotional, and spiritual health.
You are so strong. The 50/50 thing is what they gave me. So they declined for a while any how. Stay strong. H
Hi Jo im going through some crap now too and your words are healing to me.. Thank you for this channel!
No one who hasn't been there or is there understands. Sometimes having gratitude for life is the only thing we have to hold on to. Best wishes for you, Jo.
Having a chronic condition is difficult to deal with. Some have cures and treatments, a lot don't. Hope is important. For me, I hope that there will be better treatments and even a cure. My wish for you is to not give up HOPE. You have made a difficult decision on the information now available. That is not a wrong decision for you. Keep well and HOPE.💜
Hey. I have life changing surgery coming Friday. I arguably opted for it. Sometimes you have to. Sometimes you just don’t.
Good on you for knowing what you can take! And hey, the surgery won't be going anywhere. Even if it does continue to get worse, maybe by that time there will be even be better technology or medical knowledge to improve your chances of the procedure making things better.
Wow what a well thought out decision! This is so important to talk about!
I feel this, the ligament damage I got from an injury at 14, have had chronic pain, after multiple surgeries I was faced with a surgery that has a roughly 50/50 odds of fixing what causes the pain but has a 100% chance of losing the range of motion in my (right hand) non dominant hand and fingers. So I might have no pain but I will be even more disabled then I already am, was a hard choice but I turned it down didn't seem worth it.
When you were talking about the negative experiences you've had in the past, all I could think of was ... you have PTSD and understandably so. You have a level head and will seek out what's best for you - bravo!
Ask yourself if this is getting worse rapidly now? There are new interventions and techniques coming around constantly. It would be smart to wait until you are forced to. And by that time, options may have changed. I’m a retired ICU/ ER/ recovery nurse. I waited on an option 15 years ago for a pain control option. So glad I did. Technology has made tremendous advancements. So you are totally right to wait, based on what you’ve shared. You may want to speak to a pain doctor about a nerve stimulator to block pain impulses.
Solid decision for sure. Is there anything they can do in the way of nerve blockers? I have a spinal cord disorder that causes a lot of nerve pain and that’s one thing some people have used for relief even if it’s temporary. Also, I don’t know if myofascial massage would help but it’s something to possibly try from a knowledgeable massage therapist. Plus it’s a massage so bonus! Hugs to you!
Hey Jo! What you are describing is so similar to what I’m going through with my nerve damage from cauda equina storage. I have nerve pain also and lately it’s been getting worse. I know with 100% certainty that the thing that caused it is gone so it’s just part of the original nerve damage. It happened because of surgeon malpractice. There are red flag symptoms for it that I started listing endlessly from the moment I woke up from a spine surgery but nobody listened. My surgeon kept telling me that it was all perfectly normal don’t worry about it and kept demanding that I smile and look pretty. My entire existence was screaming ‘there’s something really wrong’ and I kept telling them but nobody cared. Bu the time they took me seriously and did emergency surgery, the nerve damage was permanent. My right calf doesn’t work much anymore though it has gotten better over the years plus I’ve learned to work around it some. Anyway, the pain is definitely worse since the last 6-8 months and I’ve been contemplating going back to doctors for help but because of my traumatic experience with them (the above is just one small part, I could write pages about the horrendous care I’ve received from countless doctors) I feel physically I’ll at the thought of dealing with it again. I also know that there’s nothing to be done. Surgery is t an option because the original cause is gone so surgery is out. I did contemplate amputation years ago but the nerve damage is in my back, not in my leg so I’d just be dealing with the same pain as phantom pain plus not having a semi-functional leg at all, so that’s a big old no. I know that doctors will endlessly dismiss my pain like they always do because they don’t believe women in pain. They’ll tell me that it’s all in my head and that I’m being hysterical and making a big deal out of nothing get over it already. All that’ll do is make me even more emotionally traumatized than I already am. They’ll shove nerve pain meds at me, which I’ve tried with pretty horrible results. They help the pain but turn me into the intellectual equivalent of a pickled turnip. They inhibit memory formation so I can’t remember anything when I’m on them. Gabapentin is bad, Lyrica is horrifyingly bad and caused me to be suicidal for months and of course no doctors believed me nor cared. So, like you, I’ve made the decision that I’m just going to leave it and live with the pain. I’m sure you’ve tried everything under the sun but the thing that seems to help the most are lidoderm patches that I use to cover my foot and ankle. Those seem to eventually knock the pain back and sooner than if I don’t use them. I also use kratom, an herbal pain remedy from SE Asia and cannabis to manage it. Surprisingly, it’s THC that seems to help the most, not CBD. So, we’re in similar situations We live with chronic pain that has become worse and have severe aversions to doctors who dismiss us and patronize us when we turn to them for help. I appreciate your videos because I see your struggles and victories and don’t feel so damn alone in dealing with all this. Onwards and upwards or whatever direction slightly forward is! Take care! Laura.
I understand your thoughts on MORE OPERATIONS. ANOTHER PROCEDURE!! When will it end!! Been there, done that. Still doing it. But sometimes ya just need a break. Mental health care is just as important. Wishing you all the best 👍
Thank you for sharing. Nerve pain sucks! I have no expertise, but wanted to suggest that there is anecdotal evidence of some amputees reporting some level of improvement in nerve pain from vitamins, minerals, or antioxidants. Vitamin K2 (menaquinone) and Magnesium (which helps to keep calcium in solution), Pycnogenol, Benfotiamine (a synthetic Thiamine derivative that may be useful in some cases of neuropathy), or Vitamin B-12 (Adenosylcobalamin or Methylcobalamin sublinguals) are some possibilities. Of course, always best to check with one's medical professional. Wishing you health and hope!
You give concent ie retoric..You give a Blessing with Your HEART AND SOUL .RETORIC VS H & S .You Shouldn't have to weigh your Thoughts ..Pray For Guidance not from MOUTHS But Your HUNGER FOR GUIDANCE
If you can keep us informed on this chronic pain journey and maybe do a series on coping mechanisms you're using. It would be very helpful!