Amputation vs. Limb Salvage: How to Choose

[@JoshSundquist]

Stuff for nerds 👇 📚 Here's a bunch of medical studies comparing limb salvage and amputation: www.dropbox.com/scl/fo/5esw25lo5sasg93j0skla/AEbSPByJlkWr-O1G4t8Aj70?rlkey=oem2a046zs20def34oi26so73&dl=0 🤓 A DEEP-DIVE INTO ANOTHER ANTI-AMPUTATION FLAW IN SOME OF THE MEDICAL RESEARCH: I don't want to throw shade, so I won't identify which research I find flawed, but several studies I read make a serious mythological error. We know that anywhere from 10 to 30% (depending on the study) of those who have limb salvage will eventually have an amputation due to complications from the limb salvage (e.g., infection, break, failed revision surgeries). This is often called "late amputation." To me, late amputation is clearly an outcome of a _failed_ limb salvage. Yet, several studies include patients with late amputation in the group who had initial amputations. That means they are removing those with _failed limb salvages_ out of the limb salvage category. So that misrepresents the statistical outcomes for those who have initial limb salvage. This choice further compounds the problem by lumping the failed limb salvage patients in with those who had initial amputations. This negatively skews the amputation data. Late amputations are associated with a litany of negative physical and psychological issues (see Rougraff et al, 1994). Melcer et al. (2027) separate late amputation from initial amputation and found along late amputation far worse wound complications, pain, other injury, PTSD, substance use, and more. The effect is major. In the two studies, I found that disclose their choice to include failed limb salvage with initial amputation, those with late amputation compose a _third_ of the amputee category. One out of three! Thus, these studies cannot be relied upon as an accurate measure of the outcomes for initial surgery.

[@chrisval1352]

I just can not explaining how meaningful watching your video has been. I am also a Sarcoma warrior. My tumor was in my left humerus. I was fortunate to keep my arm for 7yr, until I tripped and broke it at work. 25 rounds of radiation made it incredibly easy to break. I had surgery to fix it but almost a year to the date of the surgery, the hardware broke. For the past 6 months I have met with specialist, read medical articals and watched KZbin videos on different limb salvage surgeries. Everyday I weighted out the pros and cons, but amputation made the most logical, emotional, spiritual and physical sense to me. I didn't want to live my life afraid of hardware failure or breaking my bone again. In 2weeks I will have my left arm amputated right below my shoulder. It's still crazy that I am even typing those, but I am confident in my decision. Watching your video was very validating for me. Thank you

[@JoshSundquist]

I’m so glad this video was meaningful and validating for you. Just curious: how’d you come across the video? Best of luck with your surgery. You got this!

[@chrisval1352]

I was just watching videos, and the title caught my attention. I was familiar with your costumes, but I didn't know anything about you or your story. I am glad that I came across your channel. I watched your video on phantom pain last night. Great advice about having someone rubbing the opposite Limb. Thank you again.

[@Paulipati]

I had the limb salvage and in five years I was really struggling to walk, pain, and a lot more but I really tried to enjoy my puberty (I was 11). At 16 the osteosarchoma came back in my soft tissue, so my mom and I made a really quick choice: the amputation. I was freed from incredible and horrible pain, from that heavy weight. Also had a disarticulation and i've used crutches ever since (now im 32). I cant belive I survived so much, but it was the right choice. Thank you for this video.

[@JoshSundquist]

Hi there, thanks for sharing your story. I’m glad that the amputation was freeing for you-and that you survived the cancer!

[@StephaninasAmputeeAdventures]

I played the limb salvage game and lost. My life got better when Lefty and I finally broke up (it was a toxic relationship). Amputation is a hard choice to make, but I've never regretted it.

[@JoshSundquist]

Thanks for sharing your story. I’m glad you’re happy with the decision you made to break up with Lefty.

[@augjake]

You’re the man. Glad to see you’re still making videos sometimes.

[@JoshSundquist]

Hey thanks! I post a lot of short form on IG and TT if you wanna see stuff from me more often.

[@homicidalplatypus1]

Hey, thanks for making this video. As a long term osteo survivor that’s had both the limb salvage and amputation, I wholeheartedly agree. The amputation was a huge quality of life improvement once I got it. Another benefit that I’ve observed has been the lack of introducing a foreign body. On the hardware left inside my body I had a pretty nasty infection that I was not able to get rid of without further amputation and I’ve had several peers with similar infections on limb salvages. I’m definitely going to share this the next time some reaches out about making the decision

[@JoshSundquist]

Thanks for sharing your story here. I’m glad your quality of life improved. I do hear from a lot of people who have infections after a limb salvage. Anyway thanks for watching!

[@WagnerFamilyVlogs]

Spot on Josh, great video! I feel it all comes down to the patient and/or parents not being educated on amputation. Along with "some" doctors having a perception that choosing amputation is taking a loss and that it must Only be a last resort. The story about the boy you mentioned happens way too often. I have met so many amputees & limb salvage who waited too long to amputate and the cancer had spread. My amputation wasn't from cancer but from an infection. Either way amputation can be the best outcome for quality of life. Because of my leg amputation, I have had so many positives that have come out of it and has opened up so many new doors. From me moving to where I now live, to being able to meet my husband and having a beautiful son, to even the job I now have! Amputation is not the end of the world, only the beginning 🥰 Can't wait to see your Halloween costume for this year!

[@boombaby16]

Josh - You may not remember me, but a long time ago you made me a personal video because my friend Kareem (KsicsFaces) reached out to you to explain my story of my 4 cancers in 3 bouts, severe gvhd, and now severe bone infarcts in my ankles. You gave me some extra courage because at the time I thought I needed to go through amputation about 10 years ago. I ended up not needing to, but recently I learned that my ankles are now magnitudes worse than they were 10 years ago and I am now back into the decision making process of trying to decide between Bone Fusion, *Potential Ankle Replacement as I still have some gap in my joints, or Below Knee Amputation. This video was exactly what I needed at this time. I know this one wasn't directly made for me but with the timing of it coming out when I am processing so much it feels like it is directed at me personally again. Thank you, it's crazy to think I have been following you for so long, and you continuously have given me strength and I still use the phrase "One more thing, One more time" for many situations in my life.

[@JoshSundquist]

Hi! I do recall your story. Thanks for the update. I’m glad this video was helpful to you as you navigate a complex and difficult decision.

[@JoshSundquist]

📚 If you’re watching this video, I’m guessing you’re far into your research. So I will use many technical terms here under the assumption you’re already familiar. Further, since you have the time to be on the internet mulling over this decision, you’re likely facing a tumor situation. Trauma, by contrast, plays out quickly. So if you're a trauma victim, by the time you watch this, you will have likely already had your first surgery. But hopefully, there are also some insights here for those facing amputation because of trauma or diabetes. 🤷‍♂️ Obviously, I’m not a doctor. This isn’t medical advice. Just anecdotes and personal opinions based on my experience with a tumor.

[@owlbyovrprepared1128]

I feel like you, Jo from FootlessJo, and Alex from Alex1Leg would have some good conversations together on this topic, especially in regards to how it effects and presents in your social media and public appearances. More related to the actual video: my father definitely struggles much more with his salvaged/crushed fingers than with his partially amputated finger so this is important information to consider at all levels.

[@frodobaggins4794]

seconding this comment - footlessjo has had multiple surgeries including having more of her leg amputated, so she offers a different perspective as to why amputation might be the right choice, even if it didn't go smoothly.

[@cherylnoel9888]

I had a birth defect and had multiple surgeries up to the amputation of my left leg at 14. I have skied, kayaked, and rowed, without my leg. I'm a pediatrician and get around on crutches (stopped using a prosthesis in my 50's). Not having a left leg has helped shape who I am, but it doesn't define me. I always say "Symmetry is over-rated. I've never been symmetrical in my life!".

[@JoshSundquist]

I’m glad you’ve been able to lead such a successful and active life! I’m sure you’re a great pediatrician. Thanks for sharing.

[@edl5731]

Maybe this is inappropriate ablest thinking but I am way more impressed by the fact you skied than kayaked or rowed. Skiing is a "leg activity" My legs don't really do anything when I am kayaking or rowing. Likewise I knew this blind girl who had a wonderful voice and but I thought it was kinda silly how much of a big deal people made of her blindness and singing ability. I give her credit for having a nice voice, but her blindness didn't make her singing any more impressive to me. I can sing with my eyes closed. On the other hand I was super impressed she could complete jigsaw puzzle purely by feeling the pieces and complete the puzzle by shape. Tell me if you think I am wrong to think this way. But I kind feel like it would be belittling to be impressed with a leg amputee that can kayak because that activity doesn't involve legs.

[@cherylnoel9888]

@@edl5731 I understand. Skiing is defintiely more difficult with one leg, requiring strength and balance. I skied with one ski and outriggers - arm band crutches with short skis on the ends to help with steering. Kayaking and rowing are more arm and core body exercise, but people were impressed that I was doing them just because they hadn't seen an amputee do them. I think it's good for people to see all sorts of people with different abilities doing different things. Once, in a sporting good store, I stood with one crutch and took a good punch at the heavy bag on display. I knocked it back to bang against the pole. The kid working in that area whipped his head around to see that a middle-aged one legged woman was doing it. I love shaking up people's expectations!

[@carmensantamaria9685]

I truly admire you and I thank you a bunch for making this positive video. My son currently relapsed from osteosarcoma which has now spread to his lungs. He was diagnosed at 9 years old in 2023 and is now back for chemo, hoping that it shrinks the tumor and lesions, to then talk about surgery. I’d love to hear more about your cancer journey if possible and glad you were able to beat it! 🎗️

[@JoshSundquist]

Hi there, sorry your son has faced such an ordeal. If you want to hear more about my cancer journey, I’d recommend my book Just Don’t Fall. There’s a full length edition and a young reader’s edition available

[@CM-hp4pz]

Thank you for being so honest about this, about your experience and about the choices presented to you all those years ago. And about your decision. I am not an amputee but wanted to know more about this choice presented to individuals after reading former US Army Green Beret Ryan Hendrickson's biography, Tip of the Spear. I first heard of Mr. Hendrickson through his non-profit of the same name as his book, which is currently helping demine parts of Ukraine. What I didn't know until I read his book was that he nearly lost his right foot after stepping on an IED during his military service in Afghanistan. Basically, his foot was left dangling. He was offered options and took the path of surgical intervention to reattach his foot (it was successful, but with a long, grueling, painful recovery of more than 18 months). I honestly don't know how he made it through everything, and seeing the choice put to you at ten years old, I don't know how you made it through everything, either. My Finnish grandpa would have called it "Sisu", so that's what I'll throw out there. Both of you have inspired me so much with your enduring spirits, your "Sisu", thank you!

[@thefilipinojoe]

I don’t have a disability, but I found your video very informative and I love learning new things. I’m also highly impressed whenever I see someone with a disability who doesn’t let it stop them. You’re an inspiration is a very cliche thing to say, I realize, but you are. So “good on you” for making this video about your own experience to help others better navigate through the complex decision of amputation. Obviously, your experience has been a positive one, and you have carried on better with one leg than a lot of people do with two. I’m really proud of you and wish you continued success.

[@edl5731]

Excellent video but I think you missed one very significant reason why one would choose salvage over amputation - the capacity to change your mind. If you choose amputation you are stuck with that decision there is no going back the limb is gone forever. If you choose limb salvage and decided later amputation is the better choice you can have an amputation. For this reason alone I could see many folks taking the less committal choice particular if the person is too traumatized to make such a significant and permanent choice. I am pretty sure I would take the approach of "lets give salvage a try and see how it goes...."

[@JoshSundquist]

Fair point. And it seems like many trauma victims, in particular, go this route for that reason. Which makes sense. But: research suggests those who choose to amputate after an unsatisfactory limb salvage have worse outcomes on virtually all measurements compared to those who amputate initially or have a successful initial salvage. See this study of thousands of amputees four years after they lost limbs in Iraq and Afghanistan: www.dropbox.com/scl/fo/5esw25lo5sasg93j0skla/AKfFo-KS2-6Ut-xl-nnnpq8/A%20Comparison%20of%20Four-Year%20Health%20Outcomes.pdf?rlkey=oem2a046zs20def34oi26so73&dl=0

[@camm5245]

How I view it is that my foot was dead weight, and now I don't have to carry that anymore. It's freeing in a way.

[@JoshSundquist]

That’s a sentiment I hear often. Did you do a limb salvage initially, then? And an amputation later?

[@camm5245]

​@JoshSundquist I did get a fasciotomy two days before the amputation, and before that I had an ankle fusion, but nothing really helped so I didn't really get to choose. It was a long term problem but it started progressing too fast to fix it.

[@lilyfrancfurt]

I'm glad I found this-- I am stuck in the endless debate over more limb salvage attempts versus amputation.

[@JoshSundquist]

Best of luck navigating this difficult decision. How did you come across the video? Like, were you searching for the topic? Just curious. I just posted it yesterday so interested in how folks are discovering it.

[@lilyfrancfurt]

@@JoshSundquist I think the algorithm knows I am constantly looking up amputation videos-- your video came up on my feed.

[@buzzcutjose]

I sure am glad I came across your video. I am waiting to get the test results from the doctor if I have to have my right leg amputated below the knee. Thanks again.

[@JoshSundquist]

Hi there. Glad it was helpful to you. No matter what the test results say, you got this.

[@PocketSand42]

Not an amputee but I find your videos and story interesting. Also love that big Pixar lamp in the background. Closest thing I have to that is a bookmark. 😂

[@DanielRieger]

Just realized I've been subscribed to this channel since 2006 😮

[@JoshSundquist]

Wow. Thanks for sticking around so long!

[@EricMVlogs]

Happy 40th Birthday Josh.

[@Queen-uo8cm]

Your an Amazing and Awesome person!

[@heatherschall6470]

My sister got bit by a dog and almost had to have her arm removed but they saved it but she still only has 65 percent usage of her arm

[@19irving]

Just curious why you don't have a stump?

[@Martin-zx3gd]

Nobody needs afraid from amputation surgery.Instead bad leg You get a brend New healthy & Beauty stump.You can "wear"this stump with Endless joyful.As like Josh...M❤

[@byounghusband]

Are you still friends with Justine?

[@sudhan.s]

Mr.JoshSundquist I am having the same but not Cancer is an accident the left leg is amputated (hip dis articulated) my problem is which protein diet I should eat . Love you from India