Month: April 2021

The Nerve of Some People

The Nerve of Some People

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Plastic Surgeons and TMR Surgery:
Tackling Phantom Limb Pain

 

Everyone deals with pain at some point in their life, but when you have an amputation you know that there is a possibility of living with a pain you can’t even touch! When the missing limb is burning, itching, throbbing, or sending sharp pains with every movement it can be unnerving -pun intended- and hard to get past.

I, like so many other amputees, have dealt with phantom limb pain since day one. Most of the time I can handle it, sometimes in the quiet of night it can be hard to fall asleep, but I have been able to deal with it.  The point when I could no longer take the pain was when I couldn’t even walk into my kitchen without the pain being so sharp and unpredictable that I stopped moving!  It takes A LOT to stop me! I have a high tolerance for pain, and this was just too much for me. I have to say, this freaked me out and made me worry that maybe this was going to be like this for the rest of my life…. and then I stepped back and gave myself a pep talk. I cannot allow myself to participate in defeatist talk. Negativity cannot reside in me, I won’t allow it. So, what did I do? I had an appointment with my prosthetist and my surgeon who performed my amputation.

I was scheduled for an MRI to see if there was a neuroma, sure enough, there was one, exactly where I felt the pain. Symptomatic, great!

Next step? My orthopedic surgeon, Dr. Judd Cummings, told me that I needed to see a plastic surgeon, and the one he suggested, who knows how to perform a surgery called TMR (Targeted Muscle Reinnervation), Dr. Roni Prucz.  He put his confidence, and my future, into this doctor’s hands… and I believed in him, so I went.

Dr. Roni Prucz
Phoenix Plastic Surgery

 

Now, I didn’t have ANY desire for yet another surgery, but I promised I’d go talk to him.  What harm could that do?

….And before I knew it, I was scheduled for surgery! Dang it!

Dr. Prucz seemed confident that he could successfully help me with the pain on the back of my residual limb, where the neuroma was, but the sharp pain that I felt ripping down my non-existent shin, he couldn’t promise that. I couldn’t pinpoint where the pain was originating from and so he would just have to do exploratory surgery in that area, and hope for the best.

Without the neuroma, my gait has become so much better, there was no more pain there. However, the sharp pain, in the other area of my limb, returned about 6 weeks after surgery, not as often and not as intense, but it reared its ugly head and my fears of life-long pain returned.

No matter what, I will rise!

 

This is where I needed to advocate for myself and not just say, “Oh well, we tried.” That wasn’t good enough for me. I needed answers and I needed this to be fixed, or at least feel better. I saw my prosthetist, then Dr. Prucz, and then over to Dr. Cummings, just trying to figure this out, gain perspective, and to see if anyone had any ideas. I would NOT rest until I had direction.

Yesterday I took my next step in helping myself, I tried a sympathetic nerve block in my L3 and….. so far, so good!!!

I needed something that didn’t require another surgery and this was a good next step, and quick. If it works then I may be looking at having that nerve bundle ablated. I’ve been moving around for 24 hours now and not feeling that pain. This is a good sign, but I hesitate to get too excited, too soon. I will do my thing, I will beat on my leg through my high level of activities, like hiking, and really push the limits of my leg and socket. For me that’s the best way to really test out what I’ve had done.

I really test my leg and socket whenever something new has been done to either of them

 

I hope this podcast gives you some insight to TMR surgery, if you’re a candidate, and how to go about finding the right person to perform this on you. As always, I’m here for you! Send me an email or leave a comment. I’d love to chat and answer any questions you might have about what I went through. Talking to people who’ve been through something will help give you perspective and  maybe even curb fears you might have.

 

 

This week I want you to let go of the past, start looking to future. We cannot move forward if all we are doing is wishing we had back what we use to have. If you’ve lost a limb, it’s gone, there’s nothing you can do about it. The choice is up to you how you’ll view this difference. The choice is yours on how you will pursue your future. You can have a pity party, or you can decide to set new goals, change direction from the course you use to be on BEFORE losing your limb, and rise up!

The time is now! Dream big! Set new goals.  Adapt and move on with your life. I know there will be setbacks, I know there will be moments of pain, but they do not define you. Your attitude and what you do with your circumstance DOES!  What are you going to do? I want to see you thrive! I want to see you challenge yourself! I want you to rise up and conquer, because YOU are a warrior!  Now go out and crush it!

 

Until next time:

Be Healthy,

Be Happy,

Be YOU!!!

 

Much love,

Angie

 

Head, Shoulders,…..Knees? and….Toes?

Head, Shoulders,…..Knees? and….Toes?

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Physical Therapy After Amputation is Vitally Important to Your Success as an Amputee

My Tribe

 

Everyone needs a tribe. A group of people who are there for you, care about you, make you laugh when you want to cry and support all of your crazy ideas.  These are my people and I am so fortunate to have each and everyone of them in my life.  Some of them have been in my life since I was a teenager (my husband), others for the last few years, and others have been my medical team that have helped me through my journey into amputation. They have become friends, confidents, and the people I care about in my life. They’ve seen me at my worst, and they have watched me rise and been there watching and helping me achieve my goals. These people are priceless!

How many people can say that about their physical therapists? Some people curse those who put us through pain so we can heal, not me, they have only wanted to see me succeed…whatever it took. They never said it would be easy, but they never left my side. They worked with me, helping me get to where I wanted to go and, only then, began to let go, so I could soar.

I am excited for you to hear my interview with Dan and Kelly, the two PTs that got me up and walking in a prosthetic and running in my blade. They continued to work with me even when I got that crazed look in my eye and said, “Could we try….?” You name it, they did it. They stopped being surprised when I’d walk in saying I have something I’d like to do and just started asking what the new goal was. They continued to build my confidence and never backed down to my challenges I’d present to them.  They were my support system, and if they thought I could do it, then I could do it.

 

Relationships. It’s truly all about relationships. You see, I’m a relationship kinda girl. I love being around people, talking with people, and getting to know someone new.  My medical team is no different. The way they listen to me, hear my goals, dreams, and fears brings us closer, and we begin to work together and create a bond like no other. They have all seen me through some seriously hard times, but also the best of times. They have watched me shed tears of frustration and doubt, and laughter after accomplishing something big.

In this interview I talk with Dan and Kelly, from Touchstone Rehabilitation, about the importance of physical therapy, pre and post, amputation and how to find the right therapist for you. Not all therapist are the same, just like I said about prosthetists. Your therapist should have a ton of experience with amputees and listen to you and what’s important to you, never making you feel like what you want to accomplish is impossible- You want the therapist who wants to help you reach your goals, no matter the size.

Take a listen and take notes. Know that you have control over who you see and that you should feel confident and comfortable in their presence. Go with your gut and don’t settle. You deserve to find your tribe, too!

My “Surf Crew”- Mark, Mariah and Jovanni

 

Stopping by to say hi to the people who got you on track-it’s all about relationships!

 

This week I want you to get out and get active everyday! It doesn’t matter how long, just that you set a goal, and do it!

If you struggle walking in your prosthetic for more than a block then set a goal of walking a block. Once you do that then add another block, and continue to get out and move EVERYDAY! Don’t quit! Give yourself one week, to push yourself just a little bit more each day. At the end of the week you’ll be surprised how far you’ve come.  It takes time to build a positive habit, give yourself time to do just that.  Even after the week is up, continue, just use this week as your starting point. The sky’s the limit and you can do anything you put your mind to.

Reach out to me. Tell me how it’s going. Share your accomplishments, tell me your setback. We can do this together!!

I’m here for you!

 

Until next time:

Be Healthy,

Be Happy,

Be YOU!!

 

One foot in front of the other- that’s your starting point.
One Size Doesn’t Fit All

One Size Doesn’t Fit All

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Not All Sockets (or Prosthetists) Are Made the Same

Randy West, myself, and David Banks

 

I consider myself so fortunate to have been directed to The Limb Center by my doctor, Dr. Judd Cummings, as I was planning for my amputation. And I think I am a good judge of character, so when I went in to meet Randy West and David Banks for the first time, pre-amputation, I knew I was getting the best care out there!

Fitting my running blade and trying it out for the first time

 

When I told Randy I wanted to surf and I brought him some surf leg plans he graciously went to work and built it for me,
just because he knew it was my dream!

 

Cheesy, but priceless, photo op with Randy, the Blue guy and my new surf leg!😎

 

They listened to me. They actually HEARD what I was telling them about my dreams, goals and aspirations….as well as my fears and doubts about going through with this surgery.

Not often, but in my situation, I was able to take my test socket out for a “test drive”

 

…and test drive it I did!! A 5K hike! It ended up being a great fit.

 

I had visited another prosthetist’s office before I knew of The Limb Center, and I had a pretty good experience there, too. I also met an amazing young lady who was an above knee amputee and a fighter, while I was there. However, three major factors first swayed me to Randy and David, before I really knew them. 1) They took my insurance- this is VERY important and the other office did not! 2) My doctor was very familiar with them and worked with them directly and, quite frankly, I trusted my surgeon and his opinion in this matter, and 3) David was an above knee amputee with 20+ years of experience being one. He could see things and understand an amputee better just by living it.

Amazing attention to detail, and always teaching me how to be independent,
by showing me how my prosthetic works and fits.

 

Then once I got to meet them and talk through my decision to amputate, I knew that we had a connection far greater than me being an office visit here and there. I had their cell phone numbers, could call or text whenever there was a problem, and time and again, they showed me that I mattered to them.

This is the type of relationship you should have and that you deserve with your prosthetist.

Randy and David join me in this podcast as we discuss the right “fit” in your relationship with your prosthetist, insurance and getting the right coverage, steps to getting your first socket, and when to turn around and walk out of that office and find the right relationship you need to be a healthy, happy amputee.  It can happen, but you need to push that for yourself and know when to do it.

Knowledge is power, and I want to arm you with as much knowledge as I can so you can feel confident and ready to advocate for yourself in the medical field, in your doctor appointments and when finding and working with your prosthetist. When we have knowledge, confidence, and opportunity we can access limitless possibilities in our lives.

 

 

People don’t realize that who you see for your prosthetics is so very important-it can make or break your desire and ability to really live your life after amputation, and it’s a relationship, like family.  You’ll be working with them for years to come so you’ll want to make sure you trust and enjoy working with them.

As always, if you have comments or questions, for me or our guests, please feel free to reach out to me. I’d be happy to help.

Time to do the research and leg work- no pun intended. Talk to people, find social media groups that work with amputees, reach out to the Amputee Coalition and your doctor to see who they recommend as a prosthetist for you.

Once you have found a couple, make an appointment to go talk with them. Read their body language and how they talk with you. Do they want to hear your history, problems, dreams and aspirations? If not, move on to the next appointment. You deserve better, and it’s out there!

Make sure you address insurance issues and coverage with the prosthetist’s office. This is expensive equipment and will need to be upgraded over time- remember, it isn’t growing back so we need to make sure we have some help in coverage of costs.

If you have a prosthetist that you are unhappy with, and they don’t seem to listen or invest any more than your short office visit then you really need to find the courage and tell them it’s not working. If you are seeing someone who,  when you tell them you’re hurting or something doesn’t feel right, and they tell you that it doesn’t get any better and you need to deal with it…that’s a red flag! Time to research other places and prosthetists and find someone who can help.

This is YOUR life and YOUR body. You need to push for the best care so you can live it to the fullest. Don’t be afraid to stand up for your rights. I’m telling you, there are really good practitioners out there, you just need to look and ask the right questions to find them.

I wish you all well, and please don’t hesitate to reach out to me for help.

 

Until next time:

Be Healthy,

Be Happy,

Be YOU

“We cannot change the cards we are dealt, just how we play the game.”

-Randy Pausch

 

Is Amputation Right For You?

Is Amputation Right For You?

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Advocating For Yourself When You Reach That Moment

-My First steps as an amputee
-This was pure joy: a new life had been opened up to me
-The possibilities were endless

-My amazing nurses that saw me through
several days of recovery
-This was just before being discharged
-Excitement mixed with nerves

-Dr Judd Cummings, my amazing orthopedic surgeon

 

That moment had come, in my mind. I had done everything to make my knee work the way it was suppose to. I spent years in PT. I tried medication, pain management, dry needling, cryotherapy, holistic/Eastern medicine, blocks, non-invasive surgeries, and allergy testing. NOTHING helped. When I came home from Europe only to find out I had a blood clot and could’ve died in flight was it then that  I realized  that was it, the end of my pursuits to regaining mobility with the knee I was born with.

Enter Dr. Judd Cummings.

He listened to my concerns, had a real grasp of my years of trying to make things better and let me know that I was in the right place, checked off all the boxes, and that amputation was definitely a route he could help me take.

Was this an easy thing to talk about? No way! For a while I couldn’t even say the “A” word. If I did, it became real and I wasn’t emotionally there yet. I got several other opinions before heading back to Dr. Cummings office. One opinion even told me that I’d never walk again if I amputated!! Can you believe that!?!?

The reality is, you need to be in the right state of mind to accept it and go forward with this surgery. How did I know it was right for me? I knew I had exhausted all my options. I had started talking to people in that world who had success with their amputation, and I knew that I was NOT living my life. I was defeated. I was tired of working so hard for something that wasn’t working. I missed doing things with my family, my boys, who were growing up so quickly before my eyes while I watched from the sidelines.

I once had a doctor tell me that I would be a good candidate for amputation however I wasn’t there, yet. I had no idea what he meant by that….until my blood clot. It was like a final slap in the face. The final straw that broke the proverbial camel’s back. At that moment, in the ER, when the doctor told me I had a blood clot, I knew right then and there that I was physically ready for amputation.

I spent over a month getting second opinions, even though I knew I wanted Dr. Cummings to do the surgery, but I was doing my due diligence. Making sure I heard everything loud and clear from several medical professionals, asking a lot of questions, and sometimes hearing things I didn’t want to hear. Each one of those appointments lead me to the final decision, with conviction.

After I set the date for December 18, 2018 I had 3 months to mull it over, ask more questions, worry, get confused, doubt my decision and have nightmares. It was not an easy road leading up to that fateful date. But in those months I gained mental strength that was needed to rise above and succeed in my endeavor. By the time I woke, the morning of my surgery, I was in the best spirits, the weight of my decision was in God’s hands and I was ready! My Faith drove me forward, gave me confidence and conviction.

-I did it for them❤

When I woke after surgery, the moment I actually feared the most, I never felt better. Even my family was shocked by my recovery (I usually am very groggy and sick to my stomach when I come to), and my chirper behavior surprised them.

As I speak with Dr. Cummings in my interview you’ll hear some things that can help you succeed, if this is the path laid out for you. We discuss advocating for yourself in the doctor appoints, gaining perspective through talking to others who have been there, and knowing when to seek another opinion. Dr. Cummings also tells us what things he, as a professional, looks for when deciding if amputation is the best avenue for his patients.

This is not an easy road but it is possible to live your life once again. Yes, I look different. Yes, I have more hurdles to jump over when doing everyday chores. Yes, there are good days and bad days, but everyone has those. It’s ultimately your mindset and the attitude you take about your circumstance that can determine the success you have or don’t have.

Take a listen. Hear what we are saying and know that you, too, can live a full, healthy, and active life as an amputee.

Find joy in where you are, and hope that new adventures can still be had after amputation!

This week, if you believe you may be a candidate for amputation, or you’re leaning towards it, OR your doctor has told you that this is the way you should go then I want you to do a few things to help you in the decision making process.

  1. Check with your insurance on their coverage. This is a lifelong journey, not done once surgery is done. You’ll need to really advocate for yourself with your insurance company for the surgery AND the prosthetic care afterwards! Call them, multiple times, and make sure you always get the same answer to the questions you are asking: for example, is amputation covered? Is my prosthetic covered? Find out what type you may get-some insurance companies won’t cover an electronic leg and you need to know what that means to you.
  2. Talk to a prosthetist or two. Get to know them. Ask questions that you have thought about, like what type of leg you could get based on your physical activity level. There’s a K test they do to see where you are and insurance companies use that to determine what they will cover.
  3. Ask those prosthetist for people that would be willing to do a peer-to-peer. Talking with amputees, especially successful ones, will bolster confidence that you can do it too, and also give you an idea of their day to day routine and struggles they’ve overcome. I also learned through my peer-to-peer visits that they all had a common thread: they all had a great, positive attitude and all of them set goals for themselves for AFTER the amputation. Goals setting is so key, but attitude can make or break the situation you’ll be in.
  4. Get second, third and even fourth opinions about the surgery from different doctors. It’ll be insightful to hear the different takes they each have.

You have your work cut out for you until next week. Reach out to me if you have questions. I’d love to talk!

Until next time,

Be Healthy,

Be Happy,

Be YOU!

-My first “real” photo after I got home- I hadn’t “shown off” my new look until this moment

 

_

Embrace your new life. Except it and then you can find true happiness in the choice you made OR the choice that had to be made for you. You’ve got this! I know you can do it.

-Much love,

Angie

 

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