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I'm new to this
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04/06/11 15:39
cindy

not registered

04/06/11 15:39
cindy

not registered

I'm new to this

Hi ya'll, I am a 49 year old woman from Kentucky recently diagnosed with plantar fibromatosis. I have been reading as much as I can on this site and trying to absorb what is going on with me and my foot. I had a bump come up around January of this year, went to a podiatrist and he told me it probably was a fibromatosis and it was no big deal. He said I had probably torn my fascia at some point and this was just my body overhealing itself. He advised me to have inserts made for my shoes and scheduled me for an mri. When the mri came back to him, he told me it was pretty big and that it must have been there for a long time and I just hadn't noticed it. Within a couple of weeks, I grew another one. So he has injected them both with cortisone (which was incredibly painful) and now he is talking about me having them removed. I am reading on here that surgery isn't a good option, but it is the only one he is offering me at this point. Also, I am confused about how this is an injury overhealing. What I understand from reading on here it is genetic, but nobody in my family has this. The original lump has grown from m&m sized to peach pit size in the past 4 months, the other one is still smallish by comparison...maybe a jelly bean size. My friends and family are telling me to get another opinion about these things, but I really don't know what to do. I know that some of you have been dealing with this for a long time, and some of you seem to really be suffering a lot with it. I understand that everyone is different with this but I would like to know how big these things will get and any advice on how to get rid of them. Thanks for taking your time to read this and I appreciate any response.

04/06/11 16:21
Crano 
04/06/11 16:21
Crano 
Re: I'm new to this

I am from Ky also, And I am looking for a Dr. that knows how to treat this!
From what I understand radiation is the treatment, not surgery!
Have you called U of K or U of L? On my list, just haven't called yet?
Good luck, it sounds like yours is really active right now!
Mine started in my left foot with a small lump, shortly after that I felt another one close to the first one. My Dr.
Said I needed inserts $400.00, and I can't wear them! I have had them done twice and I can't wear them! Any insole that is hard hurts them and makes it worse. He also prescribed verapamil 15% gel from a compounding pharmacy, rub it in twice a day. I think this has helped? Maybe not to get so large? Now my right foot has two lumps?
I don't know what makes them flare and get active? I wish I did and I would stop whatever it was!
My hand both are hurting and I'm afraid that it's starting in my hands? My Dad and my GrandDad has this!
I m thinking of going to Germany for treatment if I can't find anything here?
Good luck!

04/06/11 16:42
Cyclist 
04/06/11 16:42
Cyclist 

Re: I'm new to this

cindy:
Hi ya'll, I am a 49 year old woman from Kentucky recently diagnosed with plantar fibromatosis. I have been reading as much as I can on this site and trying to absorb what is going on with me and my foot. I had a bump come up around January of this year, went to a podiatrist and he told me it probably was a fibromatosis and it was no big deal. He said I had probably torn my fascia at some point and this was just my body overhealing itself. He advised me to have inserts made for my shoes and scheduled me for an mri. When the mri came back to him, he told me it was pretty big and that it must have been there for a long time and I just hadn't noticed it. Within a couple of weeks, I grew another one. So he has injected them both with cortisone (which was incredibly painful) and now he is talking about me having them removed. I am reading on here that surgery isn't a good option, but it is the only one he is offering me at this point. Also, I am confused about how this is an injury overhealing. What I understand from reading on here it is genetic, but nobody in my family has this. The original lump has grown from m&m sized to peach pit size in the past 4 months, the other one is still smallish by comparison...maybe a jelly bean size. My friends and family are telling me to get another opinion about these things, but I really don't know what to do. I know that some of you have been dealing with this for a long time, and some of you seem to really be suffering a lot with it. I understand that everyone is different with this but I would like to know how big these things will get and any advice on how to get rid of them. Thanks for taking your time to read this and I appreciate any response.

Hey Cindy
The nodules stop growing beyond a certain point, so don't worry, they don't keep growing . You are right to get on top of the available treatments so you can make a decision about a treatment plan early. Some treatments have better outcomes if you act early.

My immediate reaction when my nodules started growing and getting symptomatic was to cut the nasty things out, but then when I started reading more about treatments, I realised that surgery just makes them much worse. You will find that a lot of patients here on the forum will tell you that surgery will not give you a good outcome.

The best thing to do is keep talking to everyone you can, and have a read of the available treatments on this website by clicking on the blue 'treatments' tab on the top of this webpage. Also, if you haven't done so already, have a read of the patient stories in the 'patients' tab under 'personal experiences' to get a feel for what these treatments are like.

This forum will also help you with getting to understand how to learn to deal with the condition while you're working it all out.

All the best
Di

04/06/11 17:03
Cyclist 
04/06/11 17:03
Cyclist 

Re: I'm new to this

Crano:
I am from Ky also, And I am looking for a Dr. that knows how to treat this!
From what I understand radiation is the treatment, not surgery!
Have you called U of K or U of L? On my list, just haven't called yet?
Good luck, it sounds like yours is really active right now!
Mine started in my left foot with a small lump, shortly after that I felt another one close to the first one. My Dr.
Said I needed inserts $400.00, and I can't wear them! I have had them done twice and I can't wear them! Any insole that is hard hurts them and makes it worse. He also prescribed verapamil 15% gel from a compounding pharmacy, rub it in twice a day. I think this has helped? Maybe not to get so large? Now my right foot has two lumps?
I don't know what makes them flare and get active? I wish I did and I would stop whatever it was!
My hand both are hurting and I'm afraid that it's starting in my hands? My Dad and my GrandDad has this!
I m thinking of going to Germany for treatment if I can't find anything here?
Good luck!

Hey Crano
My hands hurt too and I feared the worst, but it turns out it's probably just carpel tunnel. Hopefully you won't have to deal with both at once either. Not sure that the Verapamil will stop the progression, but it will help manage the nodule pain if you are having trouble with this. Some people swear by it, but others find massaging the nodules and staying active to keep the area well oxygenated helps too
Good luck with it all
Di

04/07/11 01:14
cindy

not registered

04/07/11 01:14
cindy

not registered

Re: I'm new to this

Crano:
I am from Ky also, And I am looking for a Dr. that knows how to treat this!
From what I understand radiation is the treatment, not surgery!
Have you called U of K or U of L? On my list, just haven't called yet?
Good luck, it sounds like yours is really active right now!
Mine started in my left foot with a small lump, shortly after that I felt another one close to the first one. My Dr.
Said I needed inserts $400.00, and I can't wear them! I have had them done twice and I can't wear them! Any insole that is hard hurts them and makes it worse. He also prescribed verapamil 15% gel from a compounding pharmacy, rub it in twice a day. I think this has helped? Maybe not to get so large? Now my right foot has two lumps?
I don't know what makes them flare and get active? I wish I did and I would stop whatever it was!
My hand both are hurting and I'm afraid that it's starting in my hands? My Dad and my GrandDad has this!
I m thinking of going to Germany for treatment if I can't find anything here?
Good luck!

Thanks for the response. I have the same complaint with my inserts although I do wear them at work. I work in a factory and am on my feet for 8-12 hrs a day. They do make my back and legs feel better so I think I will keep wearing them. I have not checked with the universities in KY to see if either offers RT, but that is a good idea. [color=orange] Cindy

04/07/11 01:24
cindy

not registered

04/07/11 01:24
cindy

not registered

Re: I'm new to this

Thanks Di. I was afraid these things were going to keep growing and my dr. really wasn't giving me the answers I needed. I have been lurking around this site since March, reading everything on here. I am really frustrated by this condition and the lack of good information about it. My inclination is to tell the dr. to cut these things out and let me get back to normal, but from what I understand knotty feet are my new normal

04/07/11 03:07
LubaM. 
04/07/11 03:07
LubaM. 
Re: I'm new to this

Surgery should be your "last choice" for plantar fibromatosis...I have Dupuytrens in both hands and LD in my left foot. I opted to have radiation treatments in November 2009 for my left hand and left foot. Best thing I ever did. My nodules on my foot were hard and the size of large marbles. After radiation the nodules are almost gone. There has been no progression in the areas radiated.

Edited 04/07/11 03:08

04/23/11 04:18
tboggs 
04/23/11 04:18
tboggs 
Re: I'm new to this

Crano:
I am from Ky also, And I am looking for a Dr. that knows how to treat this!
From what I understand radiation is the treatment, not surgery!
Have you called U of K or U of L? On my list, just haven't called yet?
Good luck, it sounds like yours is really active right now!
Mine started in my left foot with a small lump, shortly after that I felt another one close to the first one. My Dr.
Said I needed inserts $400.00, and I can't wear them! I have had them done twice and I can't wear them! Any insole that is hard hurts them and makes it worse. He also prescribed verapamil 15% gel from a compounding pharmacy, rub it in twice a day. I think this has helped? Maybe not to get so large? Now my right foot has two lumps?
I don't know what makes them flare and get active? I wish I did and I would stop whatever it was!
My hand both are hurting and I'm afraid that it's starting in my hands? My Dad and my GrandDad has this!
I m thinking of going to Germany for treatment if I can't find anything here?
Good luck!
I am right across the river in Ohio. If you find any Doctors that will do the radiation therapy please let me know. I pick up my gel in the morning. My insurance does not cover it, but I have to try it. I have been getting deep tissue massage and ulttasound done on my foot. I am not sure if it is helping or not. It hurts for several days afterwards, but hoping it is busting up the nodules. I have a nodule on the bottom, but the top of my foot is what hurts the most. It is awful not knowing what will help. I am thankful for this site to at least find others with the same battles

04/23/11 06:20
flojo 
04/23/11 06:20
flojo 
Re: I'm new to this

@ Cindy and Crano,

I had a podiatrist say to try Super Feet brand inserts first, and if needed, can always get the $400 ones made especially for you. My friend uses Super Feet and I use them, too, for an arthritic big toe. They help somehow in aligning my feet to take pressure off my big toe.
Neither my friend nor I have Ledderhose's but the idea of inserts would be the same, I think. I use the black or light blue ones because they go in without taking out the existing liner because they are thinner. I move them from one pair of shoes to another. You have to remove the liner that comes in the shoes if you use the thick ones. Super Feet are stiff, so they may not work for you. How about the gel ones?
Just a thought. Might not work.

04/24/11 06:08
Crano 
04/24/11 06:08
Crano 
Re: I'm new to this

tboggs:
Crano:
I am from Ky also, And I am looking for a Dr. that knows how to treat this!
From what I understand radiation is the treatment, not surgery!
Have you called U of K or U of L? On my list, just haven't called yet?
Good luck, it sounds like yours is really active right now!
Mine started in my left foot with a small lump, shortly after that I felt another one close to the first one. My Dr.
Said I needed inserts $400.00, and I can't wear them! I have had them done twice and I can't wear them! Any insole that is hard hurts them and makes it worse. He also prescribed verapamil 15% gel from a compounding pharmacy, rub it in twice a day. I think this has helped? Maybe not to get so large? Now my right foot has two lumps?
I don't know what makes them flare and get active? I wish I did and I would stop whatever it was!
My hand both are hurting and I'm afraid that it's starting in my hands? My Dad and my GrandDad has this!
I m thinking of going to Germany for treatment if I can't find anything here?
Good luck!
I am right across the river in Ohio. If you find any Doctors that will do the radiation therapy please let me know. I pick up my gel in the morning. My insurance does not cover it, but I have to try it. I have been getting deep tissue massage and ulttasound done on my foot. I am not sure if it is helping or not. It hurts for several days afterwards, but hoping it is busting up the nodules. I have a nodule on the bottom, but the top of my foot is what hurts the most. It is awful not knowing what will help. I am thankful for this site to at least find others with the same battles
I'm not sure that busting up the nodules is a good idea? Any injury to this area could make them multiple?
I am new so you might ask someone more experienced with this?
If I find a Dr. That treats this in our area I will post it here!
I just play 3 hours of tennis and my pf are very sore! But u can't let this stuff slow u down!!!

Edited 04/24/11 06:14

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