Tag: amputee

To Revise Or Not To Revise

To Revise Or Not To Revise

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That is the Question

Amputation is a difficult road, one that can change direction quickly, even after you heal.

For many amputees the surgical side of their life isn’t over. Many of us end up needing a TMR surgery or even a revision, while others will have to amputate even higher! Going from a below knee to an above knee amputation is life changing because one amputation is completely different from the next. What is required of you to be able to walk again, heal again, and trust again takes its toll.

So why do revisions happening? Why are they required for so many?

For some people their bone density is compromised. For others, bones spurs grow causing pain, And still others, myself included, find foreign objects left in their limb that no longer serve a purpose and only cause distress for the nerves. There are so many reasons that revision is brought up in doctor offices around the world and so many amputees who find it hard to wrap their head around being opened up again.

 

 

This past summer, just 8 weeks ago, I had this very choice. I was a possible candidate for an experimental surgery that I wasn’t sure the rewards were worth the risks, until we did a CT scan finding a foreign object coming out of my femur, causing the pains I have been dealing with for 6 years!

But what if your story isn’t so clear cut? How do you decide that revision is right for you?

 

 

 

Make a list of pros and cons about your revision.

Compare them and talk about them with your family and the people who support you.

Be open minded, not all revisions are necessary and timelines change.

Allow the chips fall where they may and be attentive to what’s going on around you: how have you been feeling, how’s the pain, is there something specific that you really must have done (maybe you have an underlying infection-you don’t want to wait on that one), maybe you’ve been promised a “nicer” looking residual limb.

Whatever it is, weigh that in your mind and on your list, and ask, is it necessary, and if the surgery doesn’t go as planned are you ready for that outcome?

And finally, something I’ve always believed in, Mindset and Manifestation.

 

 

Make your decision then, if you’re going for it, leave the “what if’s” behind and start setting your goals and VISUALIZING your successes post-revision. Your brain is powerful and where you led it, it will follow!

You are stronger than you know, dear Warrior!!!

It’s time to rise up!

Have a blessed day,

And as always,

Be Healthy,

Be Happy,

Be YOU!!

 

Much love,

 

Make It Personal

Make It Personal

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Amputation is a tough road. If you make the decision to amputate or if your limb is taken from you by accident or disease it’s a bumpy ride, right from the get go.

Most people assume that once you get through the surgical part and physically heal that you are back to life as usual. that couldn’t be farther from the truth.

As an amputee with 6 1/2 years of experience I can tell you that once I healed and was able to get fitted with a prothesis my journey of ups and downs was just beginning.

The one aspect that I am extremely grateful to my GP for pointing out to me was insurance. Even though I had my head wrapped around the idea of taking my leg, and I knew I had the grit and determination to tolerate all the limb changes that were coming, I needed to be sure that A) I knew what type of prosthesis I needed to live an active life and B) that my insurance covered it.

What I fought for:

 

 

 

 

 

 

This was the beginning of the most emotional and draining 4 weeks of my life. This was a fight I wasn’t prepared for, even though I thought I was.

This week I take you through what I did to cover myself, (or at least thought that I was covered), what happened that spun me out of control for 4 weeks, and how I bounced back to fight for the leg I needed to live a good and healthy life.

You may have to deal with this for yourself or someone you love, it’s good information, and from someone who now has to fight every 3 years to get the leg she needs to be mobile and I hope that my story helps you in your fight.

“No”should never be the answer when someone wants to be as mobile and healthy as they can be. We must learn how to prepare to face the insurance giants and how they work so we can be ready to stand up for ourselves and the lives we want to lead.

It’s no easy task but it is one worth our time and energy.

Remember the old saying, “The squeaky wheel gets the oil?” That became my motto that entire month I fought for my prosthesis.

Are you facing this blockade in your future, or even right now?

Check out how I went to battle and what you can do to prepare yourself.

 

 

Let’s get prepared!

First, understand your insurance plan. Look for what is covered under external prosthesis devices and what is needed to be approved, usually notation from doctor of it being “medically necessary”.

Second, get with your prosthetist and find out exactly what type of prosthesis you’ll be getting according to what your lifestyle was, what you dream of doing, and what you will be capable of (Usually you’ll take a K level test to determine your ability-my PT did this with me).

Third, get the code(s) that can be tricky and denied by most insurances and start making the call to your insurance company and ask if it’s covered by your insurance.

I even went to the extreme of calling my insurance company multiple times over the 4 months before my surgery to hear different employees tell me that “Yes, that code is covered.” Now they had it on recorded phone calls (Important to know that all calls are recorded, however, if you ask for the recordings they will tell you that your lawyer will have to file for them!!! Yes, I asked because I thought I was going to have to sue them for undo stress!).

This should be a great start to getting your approval, but even though I did all of these things, I actually got a big ‘ole “NO!” after my amputation… and while I had done my due diligence I hadn’t planned on my insurance company changing the wording on my plan after the first of the year to NOT include the code that was previously approved.

These are the unknowns you can’t prepare for but must find it in yourself to fight beyond that. You need to connect with people that can help, your doctor, your prosthetist, the prosthetic company even has their own insurance coordinator, and MAKE IT PERSONAL!

I made sure the calls I made to supervisors every day that month that I told them who I was, about my family, and my hopes and dreams I had for my future. You are NOT a claim number you are a person with a life. Make them see that and feel that.

 

These are just some starting points but I hope they help you navigate the crazy world of insurance claims.

Now get up and fight for your life of your dreams!

Don’t take No for an answer, dear Warriors!

Rise up and fight!!

Have a beautiful day and as always,

Be Healthy,

Be Happy,

Be YOU!!!

 

Much love,

 

 

The Secret Sauce

The Secret Sauce

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Letting Go and Leaning In

 

I have been an amputee for 6 1/2 years, but before that I had a taekwondo injury that took me through 5 years, 10 surgeons and 10 surgeries, plus a blood clot to decide it was time to start living again and make the biggest decision of my life.

Alone in the decision, I was not. I had an amazing support system with my husband, two boys and my family back home. I had friends rallying around me and a church I belonged to. However, I was exhausted.

I had put so much energy into saving my leg that I had depleted all of my positivity and resolve. How was I ever going to come terms with cutting off my leg?

Today I want to share with you all my story of Faith. I feel it is time to be true to myself and honor my beliefs.

I could NOT have done this without my “Secret Sauce”.

I get asked a lot how I handled making this big decision and how I keep going despite the pains and trials of being one leg down. I did NOT do it alone, but it takes something more than cheerleaders in my life. No, my “secret sauce” is greater than anything else, greater than my own drive or perfectionism. I needed to find peace and purpose in my decision.

If you are struggling my hope is that this brings some answers and help for you. Maybe you are curious as to where my positivity comes from or my resolve. Today I share my profound experience with my Faith that changed EVERYTHING in a moment…and I have never looked back.

I hope my experience helps you and opens a door you never knocked on. Let me know. Reach out to me with your own profound experience with faith over fear, or just let me know how you struggle. I would love to help you through my own challenges. There is no need to go it alone or to feel abandoned. You have a great cheer;eager in your corner that wants you to live a great life. Trust and look up, Warriors!

 

I hope you all have a blessed day and as always,

‘Be Healthy,

Be Happy,

Be You!!

 

Much love,

Hand Me That Weight

Hand Me That Weight

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We Need Each Other

 

 

We are creatures built to live in community.

This gives us a safe place to celebrate in great times, gain support in the bad ones, and everything in between.

Talking with people, sharing our journeys and stories, our ups and downs with others, plus listening to our friends and community during their moments is a beautiful symphony of give and take that allows us to feel valued and to give value to others.

I feel that when I hear people struggling that the one thing they are missing is connections with others and the outside world. I notice that about me too.

This past week after sutures were removed I decided I was in need of MY community,  the gym.

 

First day back at the gym since surgery on June 20

 

Despite the nerves I was feeling about walking thru the doors, missing my leg and clomping around on crutches, I felt at home and ready to push myself again.

People who knew me “showed up” for me with thumbs up, smiles, and positive comments that made me feel valued and supported. I was on cloud nine and pumped to be back again!

Those endorphines were ROCKIN’!

How about you?

Are you feeling alone and stuck?

Check below for some tips:

 

 

You were meant to deal with life in a community.

It doesn’t have to be huge, just people who love you, support you, are real with you, and hear you.

It is also. place where you can reciprocate those values through being a great listener.

Remember; Give and Take.

So this week, FIND YOUR COMMUNITY!

Women amputees, join my virtual meet ups through Facebook Events on Zoom, every Wednesday at either 4:00 pm or 8:00 pm EDT.

Pick up the phone and connect with a friend.

Get back to what you love, even if you’re on crutches or in a wheelchair. Time to ditch the vanity, and embrace the moment you are in right now, it won’t be forever. And if it is, even more reason to embrace it NOW! This is you, time to move forward.

If you like the gym, find a way to get there.

If you love book clubs, join one and create a new community for yourself.

Maybe you have a neighbor who would love some company, wouldn’t you?

It’s time!

Community also means you have people from whom you can ask help. I know for many of us, asking for help looks like we are conceding and are weak, but I am learning that asking for help is a sign of growth and knowing that in this moment, I can’t do everything I want to be able to do. You aren’t giving up or quitting, just accepting limits right now.

So get out there, connect, make new friends, reach out to old ones and live your life where you are at right now! Don’t wait for things to be perfect, that time will never come.

Make your life what you want, start now.

Rise up, dear Warriors, you are worthy!

 

Have a blessed week.

And as always,

Be Healthy,

Be Happy,

Be YOU!!

 

Much love,

 

 

 

Real Talk with Dr. Carty

Real Talk with Dr. Carty

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AMI Procedure and The Future of Amputations

Brigham and Women’s Faulkner Hospital

 

“For 200 years there has been no real difference in amputation; it’s technique and how it’s done.”

Do you know anything in our world that hasn’t evolved in 200 years? No!

This was a statement that Dr. Carty stated today in our conversation and I was in disbelief. How could that be?

With so many engineering marvels happening at an exorbitant rate it is only natural to turn our eyes on the other side of this coin, the surgical procedure.

Prosthetics have evolved and become more advanced than ever before but our residual limbs are the same they have always been, not allowing amputees to truly reap the benefits of these technological advancements, but that is changing.

Dr. Carty with the help of Dr. Hugh Herr at MIT worked together to improve the human body to be a more synergistic with the devices of today and the future.

Dr. Matthew Carty-Brigham and Women’s Faulkner Hospital Reconstructive Plastic Surgeon

 

Dr. Hugh Herr-Bilateral below knee amputee, biophysicist, mechanical engineer, co-director of MIT Media Lab

 

The Agonist/Antagonist Myoneural Interface (AMI) procedure was born out of the ideas of two men who each had something they were searching for to improve functionality of a residual limb and to make it more compatible with the future of prosthetics.

I am excited to share that I will be heading to Boston this weekend to have Dr. Carty perform this procedure on me, as a study candidate, and in hopes to improve my overall functionality. I am truly very excited for this opportunity.

Join us in today’s Real Talk as Dr. Carty goes deep to explain the process of creating, changing, and implementing a new medical procedures, and what exactly the AMI is and what the hopeful outcomes are of a successful surgery.

I am truly honored and  appreciated the time you spent with me to record this episode in the midst of your busy schedule, Dr. Carty, and I look forward to working with you soon. See you win Boston!

Enjoy this deep and impactful interview and be sure to subscribe to my Vlog channel on YouTube @OneLegis Enough-BAW to follow my journey through this amazing experience.

Have an amazing week ahead, Warriors!

And as always,

Be Healthy,

Be Happy,

Be YOU!!!

 

Much love,

Facing Setbacks

Facing Setbacks

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Setbacks to Comebacks

 

Life is full of ups and downs and as an amputee we must realize that we will face many more challenges, past the amputation itself, years later.

For one, our sound side becomes extremely important to us. Taking care of our good joints while still trying to live a full and healthy life yet protecting what we have left becomes a balancing act and can be very scaring when things go wrong.

We also struggle with pain in our residual limb when our socket doesn’t fit correctly or a neuroma decides to show up.

My current situation is a strained lower back because I work so hard with balance and bending over to pick things off the floor, all on my sound leg which puts undo pressure and tension on my lower back on the opposite side. That is my current setback, and it is not only painful, it’s frustrating!

I have 2 weeks until I take off for Boston to go through extensive reconstructive surgery on my residual limb, plus a unique procedure created by MIT and my doctor. My goal 2 weeks ago was to eat well, cut our alcohol and get back to the gym daily to get in the best shape for this surgery. Literally the first week into that plan I tweaked my back! Now I am trying to be patient and waiting for the slow healing process my back is going through.

 

1 year after my amputation I found a neuroma in my hamstring and had to go thru another surgery!
Stayed positive but at times it was hard, starting over with healing is hard!

 

Not being able to wear the prosthesis while healing can break you but setting goals and looking to the future helps. Stay positive!

 

What I have learned through all the setbacks since becoming an amputee:

-This too shall pass

-Stay positive

-Set goals

-Use this time to do what you CAN do at this moment.

-Setbacks tend to be moments that are setting you up for a comeback. Be ready!

 

Look to the future. Dream! Stay focused on your goals and objectives!

 

If you are going through a setback now, don’t get discouraged just keep focused on the positive and the future.

It is not the end, it’s just a moment for your mind and body to be prepared for something more.

 

 

This week I challenge you to be still and focus your attention to what you CAN do and positive thoughts during a setback or a rough patch.

Try these steps out:

-Realize that this moment won’t last forever.

-Use this time to stop and listen to your body and realize what it needs to heal, usually it is telling you to give it a break and let it heal.

-Set goals for yourself to do once your setback fades away.

-Visualize yourself being successful and accomplishing your goals. Visualize positivity!

-Remember your “Why”. What are you doing this all for? Yourself? Your mental health? Your family? Your job? What is it that drives you forward? Your “Why’s” should be clear because they are what will help you in hard times and when you feel like you are all alone. The Why’s are your motivation to keep moving forward.

Of all the setbacks I have endured since becoming an amputee, one thing has been certain, the hard times end and the comebacks win!

You are a warrior! Believe it! See yourself as the strong individual I know you are.

Have an amazing week ahead.

Get after this Call to Action and reach out to me if you have questions or want to give me an update on how you’re doing.

And as always,

Be Healthy,

Be Happy,

Be YOU!!!

 

Much love,

 

 

 

Stressed Out!!

Stressed Out!!

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Dealing With Stress to Alleviate Phantom Pain

 

Ahhh, stress!

It wouldn’t be a day or a week without something triggering stress. A bid decision, a deadline, a fight with a friend, or even traffic!

As amputees we also face the uphill battles of healing, socket fittings, sores and painful steps, and phantom pains. Sometimes it feels like we never get a break. It feels like the weight of the world is placed on our shoulders and we can’t come up for air.

What we all need to learn is that every time we feel stressed out we have, in our own power, the ability to change the outcome. We control the narrative and we control how we come out on the other side.

“Mind over Matter” isn’t just a cliche it is truth.

 

 

When we hold in stressors we destroy our immune system, disrupt our nervous system, and create more problems than we need to.

We need to find ways to release negativity and stressors in our life. They will always be there, so instead of letting them take control and reeking havoc on your health you need to find ways to work through them and find a peace in your life.

When we learn to breathe, slow down, relax, and let go of the things we cannot control, then start feeding our mind with positive and affirming words we can begin to heal ourselves and give our bodies a chance to heal.

This week I challenge you.

 

 

Find time to slow down and breathe slowly and deeply through troubles and stressors you are feeling. Realize what you can control and what you cannot. If you can’t control something it’s time to let it go.

Use animals to help you find quiet time and centering. Horses especially are extremely intuitive and can read you from a mile away. If you bring in negative energy or a lot of “baggage” they won’t want to be close to you, and I don’t know about you, but I go see my horses for the kisses and love they pour into me. If I come preoccupied and upset, holding onto something negative, they sense it and walk away from me. I must clear my mind and center/ground myself if I want meaningful interaction with them.

 

Our closeness happens when I let my fears, anxiety, and stressors melt away and I focus on being present with my girl.

Words of affirmation and positivity. Speak them and repeat them as often as you need to about yourself until you have created a positive mindset. If you consistently beat yourself up over little things or become negative about your healing then this is where you need the most work. Our brain is a very powerful tool that believes what we speak into it. Speak only good and positive and watch your circumstances change for the better!

 

 

Finally, have grace upon grace for yourself. You won’t be perfect and you will stumble as you go through life, we all do, the challenge is to pick yourself back up, dust yourself off, and try again.

You’ve got this and I know you can do it. As you begin to make the changes needed to reduce stressors in your life you will start to notice phantom pains not being your focal point which then makes their grip on you much less.

Don’t give your pain power! Deny them and don’t continue to talk about them. The less time you pay attention to the pains you feel the less likely you are to be consumed and debilitated by them. You deserve better!

You can do this!

Be positive, breathe and focus on the positives! Watch your stress melt away and your phantom pains calm down.

Wishing you a week filled with health and happy thoughts.

And as always,

Be Healthy,

Be Happy,

Be YOU!!

Much love,

 

 

The Neuroscience of Phantom Pain

The Neuroscience of Phantom Pain

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The Latest Research Behind Phantom Pain

 

You may have heard the saying, “Mind over Matter” a few times in your life. I know I have, but did you know that it is more than just a saying? Did you know that our brains are capable of helping us cope when we struggle, especially when we deal with pain?

Today I learned how the brain can actually help us changing the way we think and perceive the pain we feel.

We have the ability to redirect and reconnect our brain waves to cope with phantom pain, or any pain, that we experience.

Today, I was honored to have on Dr Felipe Fregni, professor of Physical Medicine and Rehabilitation at Harvard Medical School and Professor of Epidemiology at Harvard TH Chan School of Public Health, as well as the Director of the laboratory of Neuromodulation at Spaulding Rehabilitation Hospital. He has been researching how the brain perceives pain and what is happening during bouts of pain to our brain.

Dr Felipe Fregni, Harvard Professor

 

The hope is that if we learn how our brain works and how it changes during moments of pain or discomfort then we can start to use that information to better equip the individual to work through pain and eliminate it without medication!

Wouldn’t that be something!

Studying the brain to find connections

 

Dr Fregni splits his time teaching at Harvard and working the lab at Spaulding Rehabilitation Hospital

 

Dr Fregni and his staff and students have been researching this topic for a while now and getting the data they need from participants, like myself, and they could use you too!

Their goal is to create a device that you can wear to assist in pain elimination through brain waves. They started this study with bringing people into their lab to trial what they had created. Now they are onto phase 2 and getting new participants to work from home with their device.

As an amputee I am excited to see research into phantom pain and how we deal with it and finding ways to cope without medication. Dr Fregni also mentioned that their research also branches into helping stroke victims and paralysis as well!

When we figure out how pain is communicated within our body we can then begin to find ways to lessen or even eliminate it.

One interesting thing we did touch on, which I stated at the very beginning was the mind over matter mentality. You may have heard me say that when I start hurting I tend to become active, I get moving and I find something to distract myself from thinking about the phantom pain. What Dr Fregni told me was that when we become active we start using our brain, we get neurons to fire and this makes for a healthy brain. So every time I’m struggling, my coping mechanism was to not think about the pain but to dive into something else. This is exactly what we should all be doing because we are creating connections in our brain, fire it up, and building it stronger. So mindset matters. Speaking to ourselves in positive ways matters. Even thinking about an activity we love to do creates connections in our brain for healing. What a powerful organ it is, indeed!

I want to thank Dr Fregni for coming on and guiding us through how our brain is capable of helping us heal and for building this community of researchers to help those of us who are struggling with pain and need a better way to handle it. I look forward to seeing how your research builds a stronger and healthier tomorrow for us! Thank you!

If you would like to take part in the clinical research happening right now, from the comfort of your own home you can reach out to Dr Fregni’s department with the link below.

I hope you all have a very blessed week.

And as always until next time,

Be Healthy,

Be Happy,

Be YOU!!!

Much love,

 

 

To see if you qualify to participate in their study please click HERE

That’s A Wrap!

That’s A Wrap!

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Loss/Limb Difference Awareness Month 2025

 


Garrison Hayes and Eric Gutierrez-Camacho
Colorado State University

John McCollough: MIT
Ophelie Herve: UCLA
Mira Mutnick, Jake Kanetis, and Marty Kilbane
Colorado State University

Dan Levine: MIT

As April comes to a close we say a huge thank you to all of the university students ts who came on to share what they have been working on, in the fields of mechanical and biomedical engineering, robotics, and media arts and sciences. All of these amazing students have a passion for assisting and improving the lives of people in the amputee community with their genius and creative enhancements to prosthetics, sockets, surgical procedures and research.

I cannot thank them all enough for caring so deeply for our community and for working so hard to improve it.

As this month closes out I want to entice you all to subscribe to my channel as next week we begin to explore phantom pain.

I have a professor from Harvard coming on to talk about his study into how the mind works, and how it can be used as a tool to combat phantom pain. Very intriguing conversation and maybe a few cues for us amputees to use to begin taking charge of our bodies without the use of drugs.

Please make sure you stay tuned for future episodes!

hHave a very blessed and wonderful week,

And as always,

Be Healthy,

Be Happy,

Be YOU!!!

 

much love,

The Future is Now: Part 4 of 5

The Future is Now: Part 4 of 5

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University of Michigan

Mira Mutnik, Jake Kanetis, and Marty Kilbane

 

 

Amazing conversation with not 1, not 2, but 3 PhD students at the University of Michigan this week!

A true, authentic conversation about the innovation and design of future prosthesis and the growth and research of creating a surgical procedures to aid in using these newly designed prosthesis all with the purpose of replicating the natural human movement.

We packed so much conversation into this episode with so much more we could have talked about.

Once again, we discussed what we could, but some details must be left out due to the highly competitive field these young adults are working in.

What I love about these three students is that even though they are all in a different sector, so to speak, of research: Mira-above limb amputees, Jake-below limb amputees, and Marty-prosthetics, they are all working towards the same goal; creating the best way to unify the surgical procedure and prosthesis to give the amputee the best, most natural movement possible.

 

Jake all hooked up to monitor human movement to collect data for his research

 

Marty working with a study participant on their design of a prosthesis they are working on in the lab.

 

Mira collecting data on her upper limb project and how to get the best hand movement and dexterity of a prosthesis.

 

We had a great discussion of what it could look like for the future of amputees and the length of time these studies take. There are a lot of hoops to jump through, safety regulations, data collecting, and trials. The FDA must approve procedures and products that they hope to take to market some day, but these students have become three of the many students going through the program at University of Michigan, working tirelessly to bring this technology closer to us being able to access it.

I find it so unique to see the shift from making the newest, coolest, most advanced products for us to wear, as amputees, to surgical procedures to make our bodies work in harmony with a prosthesis. The one thing we did dive deep into was the procedure of getting candidates who fit the bill to doing the trial procedures, and finding willing participants as well. This can be so tricky as we struggle with the idea of going back in and revision the original amputation in hopes that the outcome will be the same if not better, but the concern that it could be worse.

I hope you will join us today, listen to the entire podcast and see what dedication these students have for helping our amputee community, what motivates them to continue into this higher level of study, and what their plans are for their future after graduation.

Thank you Jake, Mira, and Marty for sharing your passion. Your dedication to helping our community find a better way to live is inspiring and deserves our gratitude!

Continue doing what you’re doing, and know we all thank you for the time, ideas, and ingenuity to take amputees to the next level!

Please make sure you all Like, Share, and Subscribe so you don’t miss an episode as we continue with our 5th Student interview next week as we visit MIT again from a different angle.

Wishing you all the best, and a blessed week ahead.

And as always,

Be Healthy,

Be Happy,

Be YOU!!

 

Much love,

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