pressure sore

“FEEL” is a 4-Letter Word

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Yohan’s Foot Surgery #19

 

 

voices-funny

I hear voices. Eavesdropping, as if I were an innocent bystander, I witness the back and forth volley of words, arguments, and reasoning. Often, I put a harsh stop to the banter, for fear of losing too many precious minutes to internal disputes and emotionally draining debates. Trying to reach my neutral, rational space often feels impossible, like I’m swimming against a strong current intent on overwhelming my frantic efforts.  Yet, somehow, someway, I usually manage to quiet the noise, at least temporarily, and transition into a state of calm deliberation, frantic activity or self-imposed numbness.

Yohan had his first ever foot reconstruction surgery in June and 8 months later, he’s still not walking without using crutches or a knee scooter (see previous blog posts for the whole story). As soon as he starts to put full pressure on his foot, sores develop.

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When that happens, staying off the foot until it heals is the remedy. To offset the pressure, he had his shoes modified, new orthotics made, which were adjusted again and again and again, only to have the sore reappear when weight-bearing.  I know that all surgeries do not go as planned. You probably also know that surgeries are risky, in many, many ways. But I thought the surgeries that went awry happened to other people.  But this time, Yohan is that other person.

The holidays came and went, and in January we found ourselves at a standstill, not knowing what direction to turn. The last pictures I sent to our surgeon showed how Yohan’s foot had healed, and it did not look right.  For some reason, his heel looked misaligned, causing excessive pronation and weight distribution imbalance.  Our surgeon, Dr. Pfeffer, was perplexed, but to his credit, he’s promised to make it right. Putting ego aside, Dr. Pfeffer is determined to make the next surgery the “last surgery” by asking for second and third opinions from well-respected colleagues.  He wants to make 100% sure that no rock is left unturned before going back in to correct the lopsided foot and straighten Yohan’s toes. His humility, commitment, and compassion command our genuine respect.

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Left Foot After Surgery

Nevertheless, I dread this second surgery. I just want Yohan to be able to walk with ease, even if it is only short distances. And in all honesty, I may have felt, if only for a microsecond, discouraged, angry and saddened by all the challenges Yohan’s already faced throughout his 23 years on this planet, due to the effects of CMT. He complains rarely and manages his day-to-day with laughter, humor, and hope. Yet it is difficult to witness his debilitating fatigue, chronic pain and now, successive surgeries. I wish it weren’t so, but it is so and that’s what is true.

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In general, I tend to live in my head, not my heart. Why open up to intense emotion, when the risk is getting sucked up into a vacuum of never-ending despair and misery? When my thoughts become dark, the voices in my head try to cheer me up, scold me for being negative and/or neutralize the negative with positive thoughts. This process has become so automatic that I often no longer know what I feel inside. Many believe that raw emotions, in all their complexity, are an undeniable part of the human experience, serving as a profound source of inner guidance and direction.

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Yeah, well my inner feeling mentor acts more like a sneaky stalker than a trusted ally, ready to pounce when I am least protected. I’d rather stay in the neutral zone and avoid the war-torn areas of my life. Yet I often wonder where those intense feelings go. Do they evaporate? Remain in the body unexpressed and ignored until the pressure builds so, they just explode? Do feelings have feelings? So many questions, so few answers.

The second surgery does not yet have a date, but it will be soon, in the near future. We’re all doing our best and trying to live in the moment. We’ll get through. Thanks for listening. And if you have a moment, let me know how you cope through difficult times. You never know, your advice and feedback may just be of help to others someone else.

Good Friends Are Hard to Find: Yohan’s Foot Surgery – #18

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Good Friends are Hard to Find: CMT feet, Cheetah legs & Time travel

It was in the fall of 9th grade, and Yohan had just twisted his ankle, yet again. It was a bad sprain, nothing a couple weeks of icing and crutches wouldn’t cure. But, a bum ankle was just the tip of the iceberg. Chronic sprains, neuropathic pain, footwear woes were more the norm as his CMT progressed. His good friend Will, trying to make Yohan feel better, innocently came up with a solution to stop the madness. “Yohan, why don’t you just get below-the-knee amputations? I bet they could give you an awesome, high-tech pair of Cheetah Legs, and then you could run, play sports, hike….you could do it all!, ” he said as his thoughts drifted to Yohan’s  first gold medal sprinting win at the Paralympics.

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As crazy as this idea of artificial limbs sounded at the time, it didn’t seem so far-fetched today.

Here are the facts:

-Yohan had reconstructive foot surgery in June.

-As soon as he was given the go ahead to walk, he developed a pressure sore on the ball of his foot.

-Pressure sores are persistent and in his case, a sign that his foot mechanics are off.

-Orthotic modifications have not been helpful.orthotics

-One surgeon suggested surgically lifting the big toe bone, and straightening all the toes, while a second surgeon had a completely different perspective. They do agree on one detail: Both think another surgery is imperative to get him back on his feet. We were hesitant to get a second opinion- it often confuses the picture even more, and then the patient is left to figure out the “right” solution.

Lately, I find myself saying the “F” word ….a lot.

f-word

Why? I am angry, frustrated, scared, disappointed, and did I mention, scared? It feels as if we are rolling the dice or playing Russian roulette: One wrong move and BANG!!  You are no longer walking. Maybe a classic case of negative thinking,  but that’s the analogy which came to me, so I used it.

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Today, I’ve had a bad case of the “shouldawouldacouldas,” otherwise known as regret or backward thinking. If only if we could just go back to May, to the joy and happiness of Yohan’s graduation day, with the knowledge we have today. Maybe the surgery would have gone differently. Maybe we would not even have had the surgery. Maybe he did not even need surgery. High? No, I am not high….a bit delusional perhaps, but not high.

I was even Googling “time travel + start-up companies+ Steven Hawkins” hoping to discover an investment opportunity to enhance the development for time machine technology. We could even launch a Time Travel app!  Wouldn’t that be cool? I didn’t find what I was looking for, but I did find this interesting article: http://www.dailymail.co.uk/home/moslive/article-1269288/STEPHEN-HAWKING-How-build-time-machine.html”time

Balderdash!! STOP. REWIND. The only way forward is to look ahead, not back.

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If I invest in anything, it will be in Yohan’s future and the future of so many with CMT. At least in this realm, the CMTA is making tangible and reality- based progress. If you do not know about the STAR or Strategy to Accelerate Research initiative, click here:  http://www.cmtausa.org/research/our-star-strategy/

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We are not really ready for the cheetah leg prosthetics. Having chronic pain myself, I too fantasize about getting cool-looking prosthetic limbs. It’s tempting. I mean, who wouldn’t want to look  and get around like actor, activist and athlete Aimee Mullins?:

aimee

But, both Yohan and I are kind of attached (literally and physically) to our own feet and calves, And then, of course, there is that problem of nerve pain, phantom limb pain, emotional turmoil, financial considerations, etc…..it’s a big decision, one we are seriously not considering. But Will was right, they sure are impressive. Love you Will!

Cracking Under Pressure

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Yohan’s Foot Surgery – #17

6 months later, he is still crutching around the house.  Every time Yohan attempts to walk on the surgically repaired foot, he develops open sores and blisters on the ball of his foot. We were hopeful that the custom-made orthotic would shift his weight to a better, more functional position. It does, but his fragile skin just plain cracks under pressure.

Infection is also an on-going concern. With little sensation on the bottom of his feet, the seepage from the sore was the only indication something was amiss. Now, to avert danger, he inspects his soles day and night with a telescoping mirror.

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“You need another surgery on that same foot?”  I repeated incredulously as if I had not heard him right the first time. Sounding deflated, he explained, “Yeah… Dr. Pfeffer wants to take the pressure off the ball my foot, by surgically lifting the bone.  He also wants to straighten my toes, and I’m not too sure about that. I’m going to think about it. Anyway, all in all, it’s a 6-8 week recovery period.”

Remaining calm and collected on the outside, I steadily asked a few more questions, showed my support and told Yohan we would do whatever it takes to get him walking again. But inside, I’m all like, WTF? Another surgery? You gotta’ be kidding me. My friend, Bethany had her feet surgically repaired and now she is walking all over the place. In fact, she can walk further and longer than most people I know. And Jeana had surgeries…ONCE on each foot, and now her feet look great! She has funky pinky toes, but hey, she can dance, walk, and exercise.

As I thought about this new piece of information, I suddenly remembered all the community members on our Facebook group who had mentioned having multiple surgeries – 10, 15, 20 operations over the years. I had put these people in the category of anomalies. They must have had really bad surgeons or maybe the procedures were done a long time ago when surgeons did not know CMT and really hadn’t a clue as to what they were doing. Today, surely, with advanced technology and techniques, a second surgery on the same foot within a 6-month time frame is probably unheard of.

Many DO have multiple surgeries to correct CMT feet. It may not be news to you, but it just hit me that I must be completely delusional.

delusional-unicorn

As I count, I realize that it is more common to require several procedures on each foot, and then some over the years, than to have one surgery and be done with it. In fact, just last week I ran into a woman at the local fruit stand who commented on the Shark-O-Marie-Tooth bumper sticker on my car. “Oh, I see you have that too,” she muttered as she whisked by me.  “What do I have?” I asked a bit confused. While feeling the ripeness of a cantaloupe, she offered, “ That thing, you know- Charcot-Marie-Tooth. My husband has that too.” She moved on to the kiwi, popping bite-sized samples into her mouth. “He’s in his 70’s now and he’s had over 23 surgeries on his feet over the years.”

I almost choked on the chunk of apple that lodged itself in my throat. Funny how reality changes once you open yourself up to the world. Haven’t you ever heard a new word, idea or process, and then you hear about it again and again, wherever you look. This phenomenon actually has a name: The Baader-Meinhof Phenomenon.   Never heard of it? You will. Now that you are in the know, your unconscious will be scanning the environment looking for this word and you will be surprised at how often it will crop up from this day forth. This phenomenon even has its own Facebook page: https://www.facebook.com/TheBaaderMeinhofPhenomenon

Where was I? Ah, yes…back to Yohan.

The second surgery on the same foot is not scheduled yet, but come January 3rd, a call to Dr. Pfeffer’s surgery nurse will be made. Welcome 2017…….it can only get better, right?

PS: It’s not all doom and gloom. Yohan is finally using the knee scooter we’ve had since day 1. He wheels himself around the house with ease, running into people, objects, walls. He’s become quite adept at steering and getting around.  Wheeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeee!

Just an FYI: CMT SUCKS

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Yohan’s Foot Surgery- #16

Thanks to all who have asked for an update on Yohan. I’ve been all caught up and preoccupied with the best-selling book, “101 Practical Tips for Dealing with CMT”.  If you have not ordered one, do so once you’ve finished reading this post. As a bonus, we are shipping all the books priority mail through December. So if you buy your copy by Dec 20, you will most likely get it in time for December 25. Here is the link:

Thanks to all who have asked for an update on Yohan. I’ve been all caught up and preoccupied with the best-selling book, “101 Practical Tips for Dealing with CMT”.  If you have not ordered one, do so once you’ve finished reading this post. As a bonus, we are shipping all the books priority mail through December. So if you buy your copy by Dec 20, you will most likely get it in time for December 25. Here is the link: http://www.cmtausa.org/101tips

updated-fpss

As for Yohan, he’s more or less become a permanent fixture in our dining room. Every once in a while I’ll stroll on by, dust him off, rearrange the furniture and water the plants. In front of his computer screen, he keeps himself busy with grad school applications, gaming, writing projects, gaming, reading, and did I mention gaming? He’d be perfect at that mannequin challenge which has gone viral over the past month or better yet, he might be able to break the Guinness World Record for competitive sitting (72 hours).

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Looking for Yohan? Look no Further!

The only reason I know he’s still living and breathing is that nasty cough he’s had for the past 30+ days. It almost feels like a game of psychological warfare where he’s trying to make me crack, and all truth be told, he’s succeeded. I’m worn down, my will is broken and I’m more than ready to divulge any and all information I might harbor. Let the interrogation begin!

The last time I checked in, Yohan had been cleared to walk and start PT. His progress has been molasses slow since then. Why? Pressure sores. After a week or two, these sores heal, and as soon as he’s given the green light to resume walking, they break open again. It’s so frustrating!! After surgery and casting, all his hard-earned calluses dropped away, leaving fresh, pink, baby skin. Problem is –  Yohan is 23 years old and he’s totally over the baby skin stage. Like, WAY over.

baby

He’s had a shoe insert made to relieve the force on the pressure spots. And we’ve been back and forth to San Francisco 3 times in the last month to have the orthotic modified, but we are not there yet. Just this morning, that stupid sore reopened, which means one thing: Stay off the foot and get back on crutches. UGGGGGHHHHH.

Yohan will be seeing Dr. Pfeffer next week for a consultation and we’ll go from there. If we can’t take the pressure off that one spot, he may need another procedure on that foot. No way are we delving into the second foot surgery until he is 95% ambulatory with the reconstructed one. We do not know how long that will take and grad school applications have been submitted for a fall 2017 admission.

Yohan does not like surprises. He yearns for certainty and security. We all do. How do you plan your life when you can’t really plan your life? Message from the universe: Shit happens and you just have to go with the flow. You make the best of what you’re given and deal. It’s definitely not optimal, but what choice do you have? CMT sucks.

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Question: Dealt with foot sores? Share how you managed them!