My daughter has plantar Fibromatosis | Ledderhose | Forum for Dupuytren's contracture

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My daughter has plantar Fibromatosis
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27.09.07 22:47
ellensmum 
27.09.07 22:47
ellensmum 
My daughter has plantar Fibromatosis

Hi all, i have been lurking on this board for a few days and i would really like some help. To be honest i am not even sure that this is the right place for me to post but i can't find anywhere else that may be of help. At the age of 2 years old my daughter caught her foot on a piece of carpet gripper rod. The wound healed ok, but a few months later we noticed a solid lump, and took her to our gp. He arranged an ultrasound which showed nothing and we were advised because of its location to have it removed. Last year when she was just 3 years old the lump was removed and we were advised that it was a plantar fibromatosis with a high incidence of reoccurence. I have kept a very close eye on the wound, and over a year later we all started to breathe a sigh of relief until last weekend when i put my hand on her foot and found another lump, further up towards the toes on the end of the scar line. I have been back to see my gp with her today and he is arranging a refferal with the view that they will probally want to reoperate on it. Both my husband and i are really nervous of having it reoperated on as surely there is no less a chance of it reoccuring. At the present time it doesn't seem to be painful, although she does complain of sore feet from time to time (but then she is only 4 years old and knows how to get mummy round her little finger!)
I was wondering if anyone else has gone through a simillar experience and if anyone has any any non invasive ideas that we could employ. i really don't want her to end up with serious problems in her feet, but we do have the added problem that dupuytren contratcture is quite common in my side of the family.

Sorry it is a long winded post and thanks in advance for any comments
Zoe

08.10.07 22:53
jim_h 
08.10.07 22:53
jim_h 
Re: My daughter has plantar Fibromatosis

I just noticed this post and saw you never received a reply. I have a mild case of PF, not causing any problems, but I do have serious Dupuytren's. Over the years I've read everything I can find on these conditions.

Surgery for PF has a poor track record with a very high rate of recurrence, often leaving you worse than before the surgery. Personally I would not have surgery. If your doctor or surgeon has good knowledge of PF, he may have a plan to prevent recurrence which might involve removing a large are of the plantar fascia; but I'm just guessing here.

My advice, for whatever it's worth, is not to do the surgery unless and until your daughter is really being bothered by the PF. I would continue to wait for a better treatment such as injectable collagenase. Cryosurgery (freezing the tissue) has also been done with success.

09.10.07 08:42
wach 

Administrator

09.10.07 08:42
wach 

Administrator

Re: My daughter has plantar Fibromatosis

To reduce the size of Ledderhose lumps (lumps in the feet) injection of s steroid, e.g. triamcinolone, have helped for some people. Typically the nodule shrinks and stays small for several years. At least a means to buy time. Have you had a look at http://www.dupuytren-online.info/ledderhose_therapies.html? You can also click on the link at the top of this page to get to the web site of Dupuytren Society and then to the Ledderhose pages.

Wolfgang

Edited at 16.10.07 07:13

16.10.07 04:45
bstestnana

not registered

16.10.07 04:45
bstestnana

not registered

Re: My daughter has plantar Fibromatosis

Hi
Just thought I would drop you a note & let you know I recently had surgery on my left foot for PF (I had 6 nodules in the left & currently have 3 in the right so I will eventually have another surgery)......My surgery was July 27th & I was in a fiberglass cast & on crutches for several weeks, followed by an aircast for another week & a half & then had a night splint for a couple weeks after that....it has been almost 3 months now & I am not back to work yet.....looks as though I will go back to work in a couple weeks (at least part time to start) I am a retail store manager so I am on my feet 10-12 hours a day at work which is part of the reason for the delay in returning.....HOWEVER I doubt I could have tolerated working much before now anyway. Currently the incision site itself is not causing too many problems & has healed up quite well.....BUT, I still do not have the range of motion in my foot I had prior to surgery & still have some swelling...I get alot of discomfort in other areas of the foot now because of the stress on the foot caused by the surgery....as for the swelling my surgeon did say that could last up to 6 months due to the trauma to the foot. His words to me were you had a nasty nasty surgery (in fact probably the worst he had seen in over 5 years) & it is going to be quite sometime before you are 100% again. Maybe even the first of the year. Currently I am doing a scar therapy treatment nightly & have to continue that for 12 weeks, & have a few physical therapy exercises I do regularly
As for reoccurences, in my case it is really to soon to tell....however my surgeon did tell me they needed to remove the entire band in order to prevent reoccurences. He had said if you do not remove the entire band the nodules would continue to return. Overall my incision went from just below the ball of the foot, curved a bit & stops just before the start of the heel area. I had 20 stitches. It has been a long, tough healing process but if it works at least in my case it will be well worth it !! I was to the point that I could hardly get through a day of work without severe pain so something had to be done.
Coming from someone currently recovering from the surgery I would have to say in the case of a child if there is ANYWAY to avoid this I would highly recommend avoiding it. It has been a VERY difficult recovery process & I can only imagine how horrible it would be for a child (I am 45) Now I mentioned eventually I would have to have surgery on the other foot...considering what I just went through I think I will wait til I can no longer stand it before I go through this again even though the longer I wait and the more & larger the nodules become the more trauma it will cause to the rest of the foot & delay the recovery process. If it works it will be worth it, but I will not RUSH to go through it again, the right foot will have to be pretty severe, if that makes sense. I recommend you exhaust all options prior to surgery. Good Luck !!

16.10.07 10:38
ellensmum 
16.10.07 10:38
ellensmum 
Re: My daughter has plantar Fibromatosis

Hello and thank you to everyone that has viewed and answered my querries, the one thing it does seem obvious is that unfortunately my poor little ellen seems to be a bit of a rareity with her problem in that she is so young.

We are still awaiting refferal to her consultant, but hubby and i have come to the decision that we are not going to have surgery done at the present time. The lump doesn't seem to have grown in the last few weeks, and i am 99% sure it doesn't hurt. - It can be a bit hard with children to determine this! I think if we had been told at the time that there was an 80% chance of regrowth we would never have had the first one operated on.

My current battle at the moment is that her new school is adamant that she should wear plimsolls all day to keep the school carpets clean which i am totally opposed to as they cannot give her the support she needs on her foot arch aside the fact that if she should tread on a drawing pin or something simillar she will possibly end up with more problems as the soles are not very thick. My dr has said the consultant will write a letter to say that she must wear proper shoes but as of yet we haven't seen him! I have bought her a pair of shoes for inside at school but again today her class teacher has pulled me to one side and said that we ae singling her out and making her different to the rest of the school - but unfortunately she is different. I have a meeting with the head mistress and board of guvoners next week so i will let you know how i get on.

The only other thing is that i was discussing her problem with her ballet teacher and she said maybe some foot exercises may help to loosen the fascia up - is this possible?? I have been massaging it but no real response so far, although it hasn't grown so maybe this is response!

Thanks again
Zoe

17.10.07 02:33
jim_h 
17.10.07 02:33
jim_h 
Re: My daughter has plantar Fibromatosis

There is a school of thought that if you have Lederhose you need to 'baby' your feet, wear heavily padded shoes, not walk up stairs in your socks, and limit your activities. I disagree completely. I was worried at first, but decided to keep on running, walking, cycling and doing everything I'd been doing. It's been about 10 years now; the lump is somewhat larger but still not a problem. At times it hurt a little; I kept running, and the pain went away. As they say - your mileage may vary.

A possible new treatment, injectable collagenase, is on the way. The current brand name is Xiaflex, it will (hopefully) be manufactured by Auxilium once the Phase III trial completes. Currently they're aiming it at Dupuytren's but it may turn out to be helpful for Lederhose too.


17.10.07 10:35
ellensmum 
17.10.07 10:35
ellensmum 
Re: My daughter has plantar Fibromatosis

Quote:



There is a school of thought that if you have Lederhose you need to 'baby' your feet, wear heavily padded shoes, not walk up stairs in your socks, and limit your activities. I disagree completely. I was worried at first, but decided to keep on running, walking, cycling and doing everything I'd been doing. It's been about 10 years now; the lump is somewhat larger but still not a problem. At times it hurt a little; I kept running, and the pain went away. As they say - your mileage may vary.

A possible new treatment, injectable collagenase, is on the way. The current brand name is Xiaflex, it will (hopefully) be manufactured by Auxilium once the Phase III trial completes. Currently they're aiming it at Dupuytren's but it may turn out to be helpful for Lederhose too.

Hi Jim,

I agree with keeping the feet as active as possible, Ellen is quite active she really enjoys her ballet and we walk to school and back (just under a mile most days). Obviously i do have concerns that she will get another puncture to the sole of her foot so i tend to keep her in slippers when she is at home, her shoes are just normal shoes but good quality ones, so they give her the support she needs. I am just annoyed that her school seem to think they know better regarding her feet! Life is never easy!

I will mention collagnase treatment to the specialist when we eventually get to see him
Thanks for the info
Zoe





17.10.07 12:41
newman 
17.10.07 12:41
newman 

Re: My daughter has plantar Fibromatosis

Australia Calling. Hi just a thought my grandson has been wearing orthodics in his shoes since he was 4 yr of age and still has them at 7yr. The podiotrist actually fitted them in his shoes and glued them in the earlier years.Regards from down under.

21.11.07 14:01
ellensmum 
21.11.07 14:01
ellensmum 
Re: My daughter has plantar Fibromatosis

Hi all, just to let you know my daughter has her refferal date for the 3rd december, so i will let you know the outcome of the visit then.


Zoe

08.01.08 15:07
ellensmum 
08.01.08 15:07
ellensmum 
Re: My daughter has plantar Fibromatosis

Hi all,

Just an update, sorry it has taken a while but christmas, children and family got in the way!!

We saw Ellen's consultant at the begining of December and he said all the things i really wanted to hear which is pleasing for me at least. He is not happy about the idea of operating at the present time because of the possibilities of regrowth, and has raised concerns that there may also be another small cyst further down the scar line. He has done quite involved measurements and has said that he wants to see her again in 6 months to re evaluate the situation. He said that he is aware that there are alot of work going on with collagnase treatments, and so if we can bide a few years then there may possibly be a succsessful non invasive approach available. I mentioned to him about the possibilities of massage helping and he said it certainly won't hurt, but has reccommended flexing and stretching the foot as much as possible, and also seeing if we can get her to pick things up with her toes, which at the age of 4.5 she thinks is great fun.

He has also said to let her go bare foot as much as possible, although i am a little paranoid about this incase of another cut to her foot, plus we are also doing alot of building work in the house at the moment.

I have been talking to a few of my husbands family aswell over christmas and it transpires that both his grandmothers and one of his grand fathers probally had dupuytrens contracture as well, so unfortunately we seem to have the rogue genes on both sides of his family, as well as on my side of the family!!

Thanks for all the help so far

Zoe

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