Posted by: begraceful | April 5, 2011

Happy birthday to me

* * Warning: this is quite the lengthy essay* *

This year, my birthday present to myself is foot health. This may seem silly and downright odd to some people. For me, it’s a necessity that I’ve been putting off.

In 2006 I found a small bump on the arch of my left foot. Odd. It hurt a bit when I wore specific shoes that pressed on the spot. I saw one podiatrist who tried (unsuccessfully) to aspirate. This is the first of what turned into many needles in my foot and let me tell you, WORST FEELING EVER. Not only did she not get anything out of it, she seemed like she didn’t know what the heck she was doing. Note to self, it’s not rude to say, no, I don’t think I want to do that today. And then not make another appointment….

The second podiatrist I saw said, you know, we should get that out of there. Instead of doing a biopsy, let’s make an inch-long incision and just remove it. Sounded pretty logical. I also knew that this doctor has a tendency to have less than desirable bedside manner since my mom worked for the clinic where he was employed and people talk. So I wasn’t too surprised when he wasn’t really caring about how surgery would affect me etc. I wish I had run away. Instead, I went through with the surgery in 2007 instead of seeking a diagnosis through other means and have ended up with a scar on top of new bumps. Fantastic. Can you sense my joy? Once the bumps had started to grow again and started to become painful, I saw yet another podiatrist. This is number three if you’re not keeping track. This time, AH HA! A diagnosis!!!!!!! Plantar Fibromatosis aka Ledderhose disease. It’s hereditary and there is no cure. That’s kind of a bummer. So this doctor tried cortisone shots. It was worse than the aspiration. I think I had two or three shots from him over the course of maybe six months. We basically got to the point where it was obviously not working and other options should be considered. He pretty much told me the only thing left was surgery and he wasn’t too comfortable doing it. you don’t have to tell me twice!

Next, I found another doctor through a friend with foot problems. She said he was great. He was pretty good. First, he said, oh of course I’ve dealt with plantar fibromatosis, I see it all the time. Red flag… I’m sorry but if the latest research I can find is three years old and I’ve already seen three relatively young podiatrists who don’t know much about it, it’s not that common. Anyway, he did a few cortisone shots and had better form than the previous doctor. He used one injection site and moved the needle to the three different nodes vs. three separate injection entry spots. Sounds awful doesn’t it? For some reason it was faster and felt better in the long run. Mr. G came with me once and offered to hold my hand. I knew it wasn’t a good idea and after me yell/screaming and clutching the chair, I bet he’s happy I declined. So this doctor did discuss multiple treatment options with me and agreed that surgery is a last resort. He tried ultrasound waves through it and a transdermal calcium channel blocker called verapamil. I don’t think the ultrasounds helped one bit. Seriously. The verapamil cream effects were also minimal. Cortisone was the only thing that worked if for a short period of time.

From the internet I’ve learned about various treatment possibilities. One is radiation therapy. One of my caring aunts called a radiation oncologist in North Carolina to see if he knew an oncologist in Austin who had done the therapy. He gave her a name and I went to see him for a consultation. He was very nice and answered all of my questions. He knew quite a bit but mentioned that I seem to know as much as doctors do about this subject. Kinda made me feel good until I realized that I shouldn’t know more than my doctors. What hope did I have if everything I’ve read is all there is? Anyway, radiation therapy is a noninvasive option I’m heavily considering. We’ll see what these other doctors say since number four doesn’t think it has merit.

Another treatment I’ve read a bit about is cryotherapy. It’s extremely unproven but could work. From what I’ve found, results are very individualized.

Since my diagnosis in 2009, I’ve been on a rollercoaster. It’s difficult to stay positive 100% of the time. There were plenty of calls to my mom crying in the car after an appointment because the conservative treatments just weren’t working. Plenty of nights running questions through my head about what to do, what will the future hold and will I ever get rid of this? Incredible amounts of Google searches. (Sidebar: I’ve heard about newly pregnant ladies googling every ache and pain, I can now almost guarantee that will be me.) I’ve read all I can find on Ledderhose. The most recent research (in English) is from 2006. The Germans and Swiss are all up on this disease and it’s ‘sister’ Dupuytren’s disease which is basically the same thing but in the palm of one’s hand. My mom got that one… Anywho, it is basically fibrous nodules and chords that grow along the plantar fascia aka very important tendon and nerves and stuff on the bottom of your foot! If you look at the bottom of your foot and pull your big toe backwards towards your leg, you will see a cool tendon stick out running from your big toe to your heel, this is what I’m talking about. When I do that, I have this big lump of nodes running along the thickened tendon. It’s fun to creep people out with! Not much good for anything else. I’ve thought about taking a medical vacation to Germany for treatment but honestly, lots of what I’ve read is about people’s experiences there and it doesn’t seem any better than here even though they’ve been doing it for longer there…

I also feel bad for my poor mother. She feels responsible for giving this to me. I’m not sure how you CHOOSE to give your kids hereditary diseases but don’t bother her with logic like that. 🙂 poor momma. We found out at a recent family gathering that I have two aunts and an uncle with it also. My grandmother has it and mom has dupuytren’s. Apparently mine is the worst out of all of us. Anyway, I hope she can feel better about this subject. There’s nothing anyone can do to magically take it away so hopefully medicine can do something.

Now I’m off to find more opinions. You know, doctors numbered five and six… sigh. This thing sucks. Sometimes I feel so utterly defeated. Other days I feel like my foot isn’t that bad. I am afraid as I think about the future. Should I have crazy invasive surgery now while I’m young and have no kids to attend to? Do I keep it as a true last resort and they end up having to take way more tissue than would have been necessary earlier? Will it just recur?

So now you’re up to date and I’ll chronicle the rest of the story as I go. Next appointment… Wednesday! Happy 26th to me!

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Responses

  1. Happy Birthday lil’ crazy!!! I’m sorry your foot is causing so many problems, but you’re a tough cookie so try and stay positive. And I’m always here if you wanna chat, although Momma’s are good for chatting too =) Enjoy your day!!

  2. Hi, I am really sorry to hear your story and from my travels on the net it is not an uncommon one for people with Ledderhose, I am just happy that when I got diagnosed I decided surgery was a no, no. I am currently getting treatment in the form of radiotherapy (in the UK). I have tried to get as much information as possible and post it in one place (my blog). Please take a look by clicking on my name and I would love to talk to you, through e-mail maybe? (I’ve got one on the blog so contact me if you are interested) As I am always hoping to add to the patients experiences part of my website and it certainly seems like you have had a lot to deal with.

    Good luck and I hope you have found some help in the last year and that this years birthday was not so painful. 🙂


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