So.... here is my story. I am currently 35, a manager for Olive Garden (the number one ranked manager at that), a mother of 4 kids and a wife. When I was 21 years old I noticed a small lump in the arch of my right foot. I got sent to a sports medicine doctor and they took it out in the fear that it was cancer. After they took it out, they said it was a desmoid tumor. Before the stitches even came out it was back, and bigger. They sent me to Schands hospital in Gainesville Florida and they pretty much told me to live with it. So I did. I know its there but rarely causes problems. 15 years later (about 5 months ago) I felt a pain in my left foot (a pain I know all to well). It is funny how you can remember a pain from that long ago. I then noticed two small lumps on the arch of my left foot. I made an appointment with a new podietrist in town and he gave me the gel, naproxen, and a boot for my foot. NONE of the above worked. I had a terrible reaction to steroids when I was younger so that is something I could not take. I went back and he said he wanted to do an MRI so he could do surgery and see what he is up against. When I told my mom, she freaked out because of the previous surgery, and begged me to go to a family friend who is also one of the best sports med doctors in this side of the US. He has one in his hand! So that made me feel better. I know that he would emphasize and he has. His last resort was surgery. So he did a Plasma Protein Platelet Injection (Plasma Injection). Unfortunatly, two weeks after having it and one week after being at work (he took me out of work for 3 weeks before, and 2 weeks this time), it started getting bigger, and my toes have started curling under. I went and he said we are going to give the plasma treatment two more weeks and if that does not work surgery will be our option. I have very good disability with my company, however I do not have time to search for other methods. I know the dangers of the surgery, however this pain is unbearable. I can no longer take NSAIDS because they messed up the lining of my stomach, and the narcotic pain releivers make me VERY sick and really do not work. Not to mention I do not want to have to take them long term. Any advice will be helpful. I am so glad I have found this site! This is so rare and it is hard to find people who understand.

Hi Michelle,

Sorry to hear your story. Im quite new here, but some people will be along and offer advice. Ill throw mine in if you like.

I can see you're obvisouly a very busy person, but (this is just my opinion) you need to find time and you need to research alot. I started research months and months ago, and just now have i started RT for Ledderhose. From what i have found this isnt something many (if any) doctors will know about, you must put the hours in and read read and read some more. This forum is amazing and there are some great people here who will help.

You need to read as much of this site as poss, also other areas you think might not concern you, as i said ive looked over various options and i made the choice to Visit Germany for RT. There are other options of course. I still research now and i read things i didnt know. You wont ever know it all but have a very good idea and you are at a good start.

The problem is, this wont be something many know of, so not many people (except maybe on here) can advise you what to do, and even then, its such a tricky diesease , you will find the decissions stressful and hard to make (at least i did) will it work? What a lot of money? What if i just leave it? Maybe try orthotics? I need to act fast if i want RT? Are my Fibromas active? etc etc.

My choice to visit Germany didnt come lightly, and after round 1 nearly over...i still think, even if this doesnt work 100% im glad i came, ive tried the best i can and ive mett Prof S who is so nice and knowledgeable, its a breath of fresh air to speak to someone who knows more about the condition than i do!

I also looked at Seph's option, i loved the idea of leaving it and i know others that have done the same and been fine, every case it different.


This might not help much but all i advise is to read and ask lots of questions.

I wish you luck and hope you find some answers and relief.