Hello fellow sufferers and families,

Nice to find another LD resource. I am a 49 yr old WM. I was diagnosed with bi-lateral Plantar Fibromatosis in both feet and I have a large nodule on my left palm as well. I had surgery to remove 4/5ths of the Plantar fascia on both feet. Surgery on the right foot was performed in November 2002 and the wound finally healed in March 2003. The left foot was done in March and at this writing the surgical site is still not healed as yet. The hand is next surgery but I am putting it off as long as I can.

The results of surgery are mixed. I have nerve damage in both feet....It feels like someone is holding a Bic lighter under my right arch and I also have rather bad "lightning strikes" where the nerve that runs from the second toes along side the foot and up the ankle to the knee sends a bolt up the leg to the knee. I also have sciatica from a lower back problem so I know its nerve related. I also have large areas of numbness in the ball of both feet. My surgeon says it may or may not improve. The left foot while still healing has dull throbbing pain from time to time. On the other hand the intense pain from walking on the nodules has gone.

I applied for SS Disability and was declined as you have to be pretty bad to get that. As I told my wife, I am good to go from the ankles up and the neck down. I am a Federal employee so I may now file for Federal disability which is less demanding than SS. If not I have a PRIVATE insurance policy that does cover me. Bottom line is that there is virtually no way I will ever get back to "normal" and my days of working on my feet are over. I can stand and walk short distances but must get off my feet for long periods to recuperate from the building discomfort. This may improve over time but nothing is guaranteed.

From my experiences I suggest the following>>>>

1) NEVER let a podiatrist work on your LD. He's simply NOT qualified. ONLY a Surgeon EXPERIENCED in the field. I use Dr. Paul Hecht at Pennsylvania University Hospital. He's in top 100 docs in world in this field and very good.

2)Keep RECORDS of everything pertaining to your disease. You may need it. Start a daily diary and write your notes about pain, etc. so that you may have it for insurance purposes. We really need to start putting together legal briefs and case history so that we can support each other. Nothing like showing 30 case histories from other sufferers to your insurance carrier.

3)As we all know surgery is the LAST resort but if that time comes do your homework and find a Orthopaedic Surgeon in experience in this field.See rule 1 :-)

Thats about it for now. I am home everyday so if you are too drop me an e-mail and we can converse further.

Warmest wishes from Pennsylvania.
God bless you all and your effected love ones.

Doug

i agree with sean and dave that good shoes and stretching are very important. i am one of the guys that had his pea removed and have a golfball now. with good shoes, not going barefoot and being carefull to stretch before going down the steps in the morning , 99% of the time i don't even realize i have a lump on my foot and don't plan to have it removed. it is very important to take care of your foot and it will be something you can tolerate

Hi,
I have those pesky little grapes on my feet and my Foot Doc helps the NYC Ballet. He suggested I live with it; the surgery can have complications as I get older b/c of circulation.

I've got the orthotics and just purchased a night brace to stretch it out my ankle. After reading the board I am resigned to increasing my pain threshold. The recoup time and long-term complications aren't worth it to me.

I also suffered an Achilles injury when running almost 2 years ago; I have tendonitis now, just curious if anyone else has had the combination.

Also I noticed on a diagnosis board for Ledderhose that seizures and diabetes is sometimes common. I suffered a fainting spell three months ago which brought on a seizure, has anyone else had either of these problems?

I wonder why they can buzz these lumps with some sound waves like they do with stones? Any researchers lurking let me know if this treatment has been tried.

Tip Toe for now,
Tom (36/M)

Hi--

I was diagnosed with LD by my podiatrist a little over a year ago. I had been running a fair amount was on my feet a lot. I noticed a small (just about pea sized) nodule on my left arch. When I went to the podiatrist, he immediately said it was LD and that it "sure isn't going to go away" but not to do anything but maybe wear my orthotics all the time.

I already had some custom orthotics for running so I started to wear them every day. I also quit running after seeing stories on the internet about how harrowing this disease can be. My question is: is it possible for the nodules to just go away if you really have LD? A year later, I now have no nodule on my foot and can't really tell it was there. A small part of me would like to start running again, but I don't want to be stupid! Anyone have any thoughts?

Thanks,

Amy

Hi all!
Thanks for all the great information. I've watched my lump grow from a pea to quarter diameter over the last 3 or 4 years. I am 29 and VERY active- basketball, volleyball, weight-lifting. I only have the knot in my left foot and actually it doesn't hurt unless I don't stretch. A little concerned that I haven't bought orthotics yet, but after reading all of your experiences, I will probably head out this weekend. My dad has knots in both his feet and has had them for as long as mom can remember. He says they eventually peaked out and he has never had any other problems.
I guess I will be thankful that I don't have a job where I am on my feet all day, and one of these days my exercise addiction may withdraw. Until then, I will keep stretching and avoid surgery. My podiatrist friend told me they usually grow back after surgery, so he didn't recommend it (in addition to the time off). So at least I have good friends and good company here.

Sure would love to hear from Chris about the success of the acupuncture treatments though. I'm always for alternative relief and that knot sure ruins a good foot rub (especially on size 14 foot!).

Good luck all. At least summer is gone so barefoot season is closing...

Kyle