Another reconstructive foot surgery ...

The Mighty Gerbil

Tribe of Judah TF 2 Chapter Leader & CGA Admin
Staff member
Echo been thinking about you, great to see you! Good to hear about the improvement in your right foot, bad to hear about the toe though. I know it's hard but keep up with them exercises, having feet is no good to you if you never use them :) .
 
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Echo been thinking about you, great to see you! Good to hear about the improvement in your right foot, bad to hear about the toe though. I know it's hard but keep up with them exercises, having feet is no good to you if you never use them :) .
Thanks. Yeah, I've been busy not just dealing with my feet. There's been other issues I choose not to discuss. But I also forgot about my elbow. It still hasn't healed 100%. Even last month I got another cortisone shot in it because it continues to have pain & issues. It now makes this dull "pop" that occurs when I bend it that causes even more pain if I continue. It never popped prior to last year's operation. I have this feeling that it needs another operation too :( I'm returning to my doctor to have it examined again in the first week of July.

One thing I haven't really shared much is physical therapy. In 4 years, I've worked with 4 different physical therapists at 3 different clinics. Each physical therapist has had this look of hopelessness and have basically said this, "I don't know what to do with you. I feel anything I do will only cause more pain." This caused them to provide rather easy therapy sessions. Early on, I decided that if I wanted any progress, it began with the ability to push past the pain. In fact, early on, I took Switchfoot's song, "I Dare You to Move" and made it my anthem. I even added this to the title, "Even When It Hurts, I Dare You to Move." Like I said, every day, I try to do something to benefit progress and while it makes the pain worse, I still believe it's beneficial.

Also I never discussed the doubters, or in today's vernacular, the haters. I have them; former friends, church members and even family members who doubt my claims of pain. Many think I fake it. Admittedly, this causes anger and I often say, "Don't walk in my shoes, try walking with my feet." I rarely think about that, only when confronted with it.

It's been one painful journey. I've always relied on the Lord to carry me through it. I also have to thank the people at CGA and CCGR. Thank you again for the support and prayers.
 

ursen

Officer SOE/LoE/Where's "here"?
Dealing with a 100% disability I know where you are coming from on the doubters. Too often people speak without thinking and say unwise, hurtful things and learning to deal with that takes a lot of prayer to take it with grace and peace. Will continue for the Lord to bless you even through this awful time.
 

The Mighty Gerbil

Tribe of Judah TF 2 Chapter Leader & CGA Admin
Staff member
Doubting your pain never crossed my mind and I don't know why anyone who has seen your feet would, they are very clearly damaged.

If it was me I'd choose to believe I'm so tough and manly the true pain doesn't show, because I am, right? >.> <.< :p .
 
Dealing with a 100% disability I know where you are coming from on the doubters. Too often people speak without thinking and say unwise, hurtful things and learning to deal with that takes a lot of prayer to take it with grace and peace. Will continue for the Lord to bless you even through this awful time.
I can tell you speak from experience Ursen. That's probably what's been the most shocking are the doubters, including people you know. I'd never consciously say something so hurtful to another person, especially those with health issues.

Doubting your pain never crossed my mind and I don't know why anyone who has seen your feet would, they are very clearly damaged.

If it was me I'd choose to believe I'm so tough and manly the true pain doesn't show, because I am, right? >.> <.< :p .
Most of the time, I never say a word. But it does show or people will comment why my shoes look "funny." I do try to stay humble. I know people deal with a lot in their own lives. I'd say the only pride I have is the drive to overcome my foot issues. I've never believed that my foot issues trump anyone's health problems.

I have some news to share. Last Friday, I had a "lumbar spinal injection" on the right side of my spine. The injection focused on the sympathetic nerves that travel from the spine to my right foot. This was in conjunction with the recent diagnosis of CRPS. It was performed by my doctor at the pain clinic. Long story short, I complained, they apologized, & scheduled the procedure. This was a painful procedure & it's only today that my hip & lower back feel better.

My doctor said that I should be able to tell immediately if the injection worked. Afterwards on Friday, there was no difference. I was still in a lot of pain when standing and walking. Admittedly, I was very upset. On Saturday, however, I did notice that the pain wasn't as bad as before. It's no longer "agonizing" when standing or walking after 10 minutes. While there's still a lot of pain, including joint pain, I'm able to tolerate it better. I'm using less pain medication too. So this Friday, I'm having the left side of my spine injected to address the left foot.

Also, next Tuesday, I'm seeing an orthopedic surgeon for the big toe & small toe of the right foot. I couldn't wait any longer as they're both painful & problematic.

As always, thanks for the prayers,
Ed
 

LITSAFALDA

Prayer Angel, Moderator
Ed,

You know we have our own conversations as well as what we share in your thread. The whole "people don't believe you have" is heartbreaking in many ways. I will not put my experiences out here for everyone to see, but relatives and friends can be more harming than good at times.

I'm glad the shot seems to help and hope it keeps doing so. Sometimes they do and other times not so much.

Blessings and Hugs,
 
Hi everyone,

Well it’s been about 6 months since my last update. This will be a lengthy read so I apologize in advance.

As the year closes, I’ve spent much time reflecting on the year. The year of 2017 was the first time since 2012 where I didn’t have an operation to one or both of my feet. I spent the year recovering from last year’s operation to my right foot, pondering an amputation, as well as exploring non-surgical options.

As noted in the July update, I began getting “lumbar spinal blocks” to deaden the sympathetic nerves that travel from the brain, through the spine, and onto the foot. I had three total to the right side and one to the left. The left showed no change as I determined the majority of the pain comes from my right foot. The second injection to the right side showed a lesser reduction in pain and the third unfortunately showed no change at all. As a result, my pain management doctor and I decided to stop with the injections.

Also in July, I stated I was planning to see an orthopedic surgeon about the right foot’s big toe and small pinky toe. In visiting her the first time, we talked about the history of my right foot and discussed amputation. She stated that while an amputation is reasonable, she posed if I had ever considered a special type of leg brace. This began a journey that began in July and continues onto 2018.

It’s called the “ExoSym Leg Brace,” which is a hybrid prosthetic/orthotic originally developed for military veterans with a severe lower limb injury who seek to continue active service. The original designer went on to the private sector and now works for the Hanger Clinic servicing individuals considering amputation. I contacted the Hanger Clinic and sent medical forms, doctor chart notes, x-rays, pictures, and videos of me walking. Since my original injury was an “on-the-job” injury, it depended on whether my worker’s compensation approves of the leg braces. The Hanger Clinic sent the entire file, including separate statements by my doctors (main doc, orthopedic surgeon, and pain management doc) to my worker’s compensation in September. In early November, worker’s comp denied the leg braces due to the cost: $31,900. I knew they were expensive, but even I was shocked at the price.

The letter stated that I had to seek two other suppliers of the ExoSym leg brace. Here's a portion of the letter. The problem is that this device is patented which I stated numerous times. Nevertheless, in performing more research, I discovered that these types of leg braces are called AFO’s (ankle-foot orthosis) and are known as “unloaders.” These take the weight of the energy needed to create a “step” from the foot and transfers it to the knee joint. During this month (December), I met with two local suppliers. One is made in-house and the other is made in another state. The developer who designed his version in-house, I’ve established a good rapport over the past 2 years. I worked with him last year where he custom-made the orthotic and altered the new shoes that I still use today. His cost was about 1/3 less of the ExoSym. The other supplier is a basic AFO device and costs about $6k. I sent all this new information to my worker’s comp about two weeks ago. January 6, 2018, will mark 2 months from the original denial letter. I should know of their decision probably in January or early February.

In a recent visit with my orthopedic surgeon, I still need surgery for my toes. This is regardless if the leg braces are approved. The big toe needs to be fused. It definitely hurts, even just to touch it. Here’s an x-ray taken in July that shows a “ridge” at the toe joint. That wasn’t there in April 2016, when the foot was reconstructed again. As for the pinky toe, my doctor stated that while it’s possible to reconstruct the toe, the least complicated procedure is to amputate it. I said that I knew that there was a possible amputation but I did not want to hear that. I’ve had complications with almost every operation. I have an appointment with her on January 3 and will give the approval to amputate the small toe. I needed some time to think about it.

Back to my feet, that April 2016 operation did eliminate the bone pain I had at mid-foot. Other than that, overall it made the pain worse. About 2 months ago, I thought I was doing better so I took myself off painkillers. The results were very painful and shocking. The pain was unbearable as I could only walk a couple steps before it became agonizing again. I realized that in order to be comfortable and reduce painful triggers, it’s best to stay home and only go out when necessary.

Therefore, I’ve spent the entire year busy dealing with my feet. I still think about an amputation for my right foot and weigh the pros and cons. I think I’d be better off with an amputation. I’m just unsure if the pain would be reduced as other docs have stated it may make the pain worse. In addition, I still have my left foot to deal with. On the other hand, my right foot has been through so much: 25 operations, physical scars, emotional distress, endless amounts of pain, difficulties walking, and the list goes on. It would be a waste to amputate the foot. That’s my nonsensical thinking. I’ll wait for the news on the leg braces and hope to have this new operation soon and will provide better updates.

My outlook for 2018 remains hopeful.

Thanks for the continued support and prayers,

-Ed
 
Hi CGA,

Sorry for the lack of updates (again). I do have some news to share.

I was approved for leg braces in January. But these aren't the higher cost ExoSym leg braces. My worker's comp approved the AFO unloaders that cost about 2/3 less than the ExoSym. This was the developer I talked about in my previous update. He is local too. So leg braces are approved. However, they're on hold as surgery comes first. The operation is this Friday, March 23. It consists of fusing the big toe and amputating the pinky toe on my right foot.

I still remember stating "no more right foot operations" after the 2016 operation. But this cannot be avoided any longer. This will not be at the huge hospital in Seattle as with my previous ones. It's at local smaller hospital about 10 minutes away with a new surgeon. Admittedly, I have reservations as Seattle was very strict in prep work. They wanted a physical, blood work, an angiogram, and good diabetes care. My new surgeon hasn't asked for any of this. She seems confident in the operation but stated it'll take over 4 hours due to amount of hardware and damage already in my foot. I asked her to be especially careful. She agreed.

Prayers are welcome for Friday's operation. I am uneasy but I don't want to wait any longer. I leave it in God's Hands.

Thanks for reading,
Ed
 

The Mighty Gerbil

Tribe of Judah TF 2 Chapter Leader & CGA Admin
Staff member
Hi CGA,

Sorry for the lack of updates (again). I do have some news to share.

I was approved for leg braces in January. But these aren't the higher cost ExoSym leg braces. My worker's comp approved the AFO unloaders that cost about 2/3 less than the ExoSym. This was the developer I talked about in my previous update. He is local too. So leg braces are approved. However, they're on hold as surgery comes first. The operation is this Friday, March 23. It consists of fusing the big toe and amputating the pinky toe on my right foot.

I still remember stating "no more right foot operations" after the 2016 operation. But this cannot be avoided any longer. This will not be at the huge hospital in Seattle as with my previous ones. It's at local smaller hospital about 10 minutes away with a new surgeon. Admittedly, I have reservations as Seattle was very strict in prep work. They wanted a physical, blood work, an angiogram, and good diabetes care. My new surgeon hasn't asked for any of this. She seems confident in the operation but stated it'll take over 4 hours due to amount of hardware and damage already in my foot. I asked her to be especially careful. She agreed.

Prayers are welcome for Friday's operation. I am uneasy but I don't want to wait any longer. I leave it in God's Hands.

Thanks for reading,
Ed
So tired right now but I understand your lack of trust considering our past with Doctors. Doctors are just people some care others don't. Going to college doesn't make them care, probably the opposite. Maybe an opportunity to share Christ with her. God knows some of the ones we've had need Him.

Praying for you Echo. Let us know how it goes :) .
 
Well I'm on my 5th day of recovery. Surgery went great with no hiccups. I'm still dealing with quite a lot of pain including phantom pain again but the meds are working. I saw the new x-ray of my foot in the recovery room. The big toe has a plate and six screws. My right foot officially has more screws than bones in it lol. Stitches come out on April 5th and I'm sure new x-rays will be taken. I'll post another update then with the new x-ray scan.

Thank you for the prayers & support,
Ed
 

The Mighty Gerbil

Tribe of Judah TF 2 Chapter Leader & CGA Admin
Staff member
Well I'm on my 5th day of recovery. Surgery went great with no hiccups. I'm still dealing with quite a lot of pain including phantom pain again but the meds are working. I saw the new x-ray of my foot in the recovery room. The big toe has a plate and six screws. My right foot officially has more screws than bones in it lol. Stitches come out on April 5th and I'm sure new x-rays will be taken. I'll post another update then with the new x-ray scan.

Thank you for the prayers & support,
Ed
Ah Echo I was thinking about you over the weekend. Sorry I don't have much energy left for you, dealing with other things, but know I am happy to hear you are still kicking, just not so much with the foot you had operated on XD :p . Thanks for the update as always :) .
 
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