My experience with Plantar fibromatosis - ledderhose disease

My name is Patty, I live in Atlanta Georgia. I was diagnosed last year April 2012 with Plantar Fibromatosis, also known as ledderhose disease. I am creating this blog in hopes to find others out there who have this condition. I hope to find someone in the Georgia area. I am in search for podiatrist that has treated this disease and is very familiar with it.

I use to take ballroom dance classes. Two (2) hours once a week. I danced at least 3 times a week 2 to 5 hours at a time. I ran 3 miles, 3 times a week. I was always active. Never overweight.

My story begins Feb. 2012

Last year I ended up with very painful callus on the balls of both feet. I pampered this myself by using over the counter callus pads. Then I noticed a bone sticking out on the side of the top of my left foot. Odd I thought.  Although I was in no pain, I went to a podiatrist to make sure I was okay. I had x-ray. It was determined I  had posterior tibia tendonitis. He put me in a walking boot. About 2 weeks later I noticed 2 bumps protruding from the arch of my foot. This worried me. I had no pain n at that time but I thought they were bones.. In panic mode I went back to the podiatrist. He did an ultra-scan & told me to write down the name 'plantar fibromatosis' go home and search the net for information regarding plantar fibromatosis. He did not tell me anything about what Plantar fibromatotsis was or that is also known as ledderhose disease. So I left his office doing exactly s instructed. To my dismay all information I read was horror story, after horror. No cure, with end result of amputation. I was completely freaked out to say the least. By this time I was on crutches. I searched unsuccessfully for a chat room, forums, anything to be able to contact with someone with this condition. I also thought perhaps I should see an orthopedic verse a podiatrist

I made an appointment with an orthopedic for a 2nd opinion. She said I did not have fibroma. She said it was only scar tissue. Cortisone shot would take care of that. So I had two (2) cortisone shots. One on each lump. She told me to take P.T. for the tendonitis. Within 2 weeks of the shots I was off crutches and went happily about my life. The bumps in the arch was completely gone. The tendonitis in the ankle did not hurt any longer. She advised me to have custom orthotics made. This will help with the tendonitis. Something she said I would have for the rest of my life. $450.00 later I had my orthotics. When I did go dance I would wear tennis shoes with my orthotics in thinking I will never have another problem with my feet. After all I was wearing the orthotics and the bumps on the arch of my foot was only scar tissue. No worried! This was May 2012. I resumed all activity. Hooray I was cured!! However I did not go full force back to dancing. Instead I began hitting the gym and squatting with heavy weight.

But Then it Happened

In Jan. 2013 I noticed the bumps were coming back and I could feel the tingle sensation I would get in the ankle due to the tendonitis. I decided to be pro-active so I went for another cortisone shot. At that time the original doctor who had give me the cortisone shots left the practice. since the bumps returned I had a feeling that I really did have PF. I search the web to find a doctor within the same practice. he studied at Harvard so I assumed he was knowledgeable. I made the appointment with intention of another cortisone shot. This doctor confirmed it was indeed, Plantar fibroma (my worst nightmare). He said, if the 1st round of cortisone shot worked for 9 months then this one would too. He did not explain anything about this condition. He gave me the shot. Told me not to pound on the bottom of the foot. Not to squat for one week. After that resume all activity. I did as instructed. Once I resumed all activity both bumps came back full force. Larger and painful.

By Feb 2013 I was half on and half off crutches. I called multiple podiatrist office always asking the receptionist if this doctor was familiar with PF.  I did find a podiatrist with Emory. I made an appointment. This doctor was very kind. He asked me to tell him everything I knew about PF. So I did. He then said now he will tell me what part is truth and what is myth. He changed my orthotics to a more cushion type. He wrote me a prescription for transdermal verapamil 15% gel. He explained this is a long process but wanted me to go this route. He said if this did not work we could discuss shockwave therapy and/or surgery. He told me the surgery has changed and there is an 80% success rate as long as you remove the entire fascia.  I had already read to many horror stories regarding surgery so I was leery of that statement. I had not heart of the shockwave and what the success rate was on that. Anyway I decided to embark on the transdermal Verapamil 15% gel.

The doctor failed to tell me I must order this compound topical transdermal verapamil 15% gel medication from P.D.Labs located in Texas.

This is the only pharmacy that has the patent on this medication. Since I was unaware of this minor detail I went to a local compound pharmacy. They began to make this medication for me. After the 1st week or so the medication would get very grainy. I spent two (2) months applying counterfeit medication. As it is called when a pharmacy does not have the patent. I then Google this medication and learned about P.D.Labs. I sent my prescription to them. This topical medication is expensive. $250.00 per month. Thank God, I had BC/BS insurance. They paid all but $60.00. My total out of pocket was $69.00 as I had to pay the $9.00 shipping.

I’d like to mention before I embarked on this treatment plan my doctor ordered and ultra-scan (Feb. 2013) to determine the size of my bumps.

I have completed the 1st 90 days. I had 2nd ultra-scan. (June 2013) It was determine that the bumps have shrunk in length and width. However the depth remained the same on one but doubled on the other.

These measurements are in centimeters.

Feb 2013                 June 2013

Figure 1                    Figure 1

Width 1.73               width   .54

Length 2.27              length 1.65

Depth .75                  depth   .75

Feb 2013                June 2013

Figure 2                   Figure 2

Width  1.70              Width  .47

Length  1.32            length .79

Depth .57                 Depth 1.06

Although they have appeared to shrink.

The bottom line:

Am I still in pain?  Not as often. Do I have the quality of life back that this condition has robbed me of? Absolutely Not. The bumps are still noticeably there. I can feel them in my foot at rest mode. I am Not talking about feeling them by the touch of my hand. I can actually feel the sensation of the bumps while in rest mode in my foot. If I walk to much 3 to 4 blocks then my foot and ankle swell. The bumps do appear to somewhat be softer. However the fascia still protrudes from the arch and the bumps are extremely noticeable.  The T.V treatment is a 12 month process. I am however please with the results so far after 90 days of use. So what type of activity do I do now. NONE. I spend most the weekend with foot elevated.  Use my foot to get from point A to point B. I can say that I have been able to walk through the office with no pain and at the end of my work day my ankle / foot is not swollen. I do keep my foot prop up under my desk most all day.

I do plan to continue this treatment as I search for an oncologist near me that does radiotherapy. I am also in search of a new podiatrist. The reason: the podiatrist I have been seeing only offers two (2) other treatment plan. I am not keen on either. I asked his success rate on Shockwave treatment. He was unable to give me an answer. He performed this on very few PF patients. They did not come for a follow up.

Many thanks 

I want to thank Gary Manley for his compassion, kindness, knowledge. His willingness to keep me & everyone abreast on his findings.  His blog has been extremely informative. Gary's story is amazing. His determination on his quest for treatment has allowed him to regain the quality of life he lost for 2+ years. Personally I am thrilled that radiotherapy treatment has helped him. It appears the Eurpoean country is much furhtur advanced than the USA is in treating Plantar fibromatosis.

For the record: When I was 1st diagnosed with Plantar fibromatosis I was never told it was also known as ledderhose disease. So whenever I Google PF and saw things on LD I by passed that information as according to my doctors one said I had scar tissue the other PF.

Goals
One of my goals for this blog is for those out there with this condition, realize although rare as it is, they are not alone.

Another goal: Is to find a doctor in the USA who is abreast on radiotherapy treatment for PF and uses the same protocol as the European doctors. In my research it appears this treatment using the correct protocol has a high rate of putting this disease in remission.

If anyone out there has any treatments that have or have not worked.  Please post on this blog. I welcome your input

Pics of topical transdermal verapamil

2 tubes of topical transdermal
verapamil 15% gel will last 1 month

Applying the correct dose
2 application = 1 dose

must be applied in the morning
and once again in the evening

Apply on the diseased area