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fibromatosis of heel

Posted by hurting maine on 4/14/00 at 00:00 (018705)

Can anyone out there give me a good explanation of heel fibromatosis and possible treaments. haven't seen much on message board about this

Re: fibromatosis of heel

Nancy S. on 4/14/00 at 00:00 (018707)

Hi -- Wish I could answer your question . . . I just did a web search and turned up basically nothing, which no doubt has happened to you too. This must be a rare condition? If so, did your doctor have no information for you? (other than that surgery is not an option)
If no one here can respond to your question, I would go back to your doctor and wrestle the info. out of him (take someone with you who can take notes, while you listen and ask questions).
If this doctor is not helpful, I would recommend finding another -- to get the diagnosis confirmed (or not) and to get the information you need on treatments.
Are you still in a lot of pain, and does it feel different from PF?
--Nancy (also in Maine)

Re: fibromatosis of heel nancy

hurting maine on 4/14/00 at 00:00 (018713)

I HAVEN'T BEEN ABLE TO TURN UP A THING EXCEPT A POSTING IN SURGERY GUEST BOOK AT THIS SIGHT ON MARCH 23, ABOUT A MANS WIFE HAVING SURGERY FOR FIBROMATOSIS. I QUESS PAIN SIMILAR TO PF EXCEPT NOTHING SEEMS TO HELP. WAS ORIGIANLY DIAGNOSEED WITH PF AND HAD PLANTER RELEASE AFTER CORTISONE SHOTS AND YEAR AND A HALF OF NO RELIEF. TOLD DR, AFTER SURGERY NO BETTER AND WAS TOLD I MUST HAVE LOW PAIN TOLERANCE. EVENTUALLY COULD FEEL LUMPS IN HEEL THAT MY FAMILY DR. COULD NOT FEEL AND AN MRI SHOWED NOTHING SO TOLD ALL IN MY HEAD. ENDED UP AT ACADIA MENTAL HEALTH BECAUSE COULD DEAL WITH PAIN NO LONGER. THE NURSE PRACTIONER THERE COULD FEEL THEM AND REFERRED ME BACK TO POD WHO DID SURGERY. HE COULD FEEL THEM AND SAID SOFT FAT TISSUE OF HEEL HAD TURNED FIBROUS AND SURGERY WAS OUT AS NOTHING WOULD BE LEFT OVER HEEL. THEN I FOUND THE MESSAGE UNDER SURGERY GUEST BOOK HERE ABOUT A MANS WIFE HAVING SURGERY FOR. CANNOT FIND OUT ANYMORE. THE MESSAGE LISTED AN EMAIL LINK BUT I CANNOT CONNECT WITH IT.

THANKS FOR YOUR INTEREST CALVIN


Re: fibromatosis of heel nancy -- to Calvin

Nancy S. on 4/14/00 at 00:00 (018715)

Calvin, I just did a search of the message board and came up with numerous posts about fibromatosis -- by Roelinde, whose mother had this and was successfully treated with ESWT, and some posts by Joan and a few others. The most informative ones are dated from mid to late 1999 and some earlier in 2000.
Do a search with just the word fibromatosis spelled just like that, using the search box at the top of this message board page. It should turn these posts up for you, and you can read them yourself and hopefully get some info. you need. I still think you might need to see another, more helpful doctor! What do you think? Good luck to you --Nancy

Re: fibromatosis -- a few more thoughts, Calvin

Nancy S. on 4/14/00 at 00:00 (018716)

By the way, the 'it's all in your head' comment is infuriating. (You're not the first person on this board who has been told that by a doctor, unfortunately.) That's the kind of ignorance that CAN make a person feel crazy! This doctor who told you no surgery for the fibromatosis: Did he then say there's nothing to be done at all? Surely there are treatments or shoes or inserts or physical therapy or Something to help you decrease the pain. If that doctor can't offer you anything, I really do urge you to see another doctor -- keep looking until someone takes enough interest to help, if not cure, you. You may have to be very assertive and insistent to get the right attention.
Are you downeast or up north somewhere? If so, you may need to go to Portland to find someone. --Nancy

Re: fibromatosis -- MORE information nancy

HURT MAINE on 4/14/00 at 00:00 (018717)

IM FROM DOWNEAST, PODIATRIST. 2 HR.DRIVE TO BANGOR. HAVE GONE TO AN ORTHOPEDIC DR. IN AREA SINCE POD TOLD ME AND SEE CAN'T FEEL IT. SO I HAVE ABOUT 3 DRS. THAT CAN FEEL IT AND SOME THAT CAN'T. EVIDENDLY DOESN'T SHOW ON MRI BECAUSE IT IS NORMAL TISSUE TURNED FIBROUS. HAVE WORN INSERTS FOR 5 YEARS PF LEFT HEEL ALSO I BELIEVE CAUSED FROM A FALL 5 YEARS AGO AT WORK. THATS ALSO WHEN RIGHT HEEL STARTED REALLY ACTING UP. FOUND OUT YESTERDAY I HAVE PERRONEL NERVE DAMAGE LEFT LEG ALSO WHICH I RELATE TO FALL AND CAUSED DROP FOOT FOR ME FOR AWHILE BACK IN JANUARY. SAW AN OTHOP. FOOT SPECIALIST IN PORTLAND ABOUT 3 YEARS AGO BEFORE I KNEW OF FIBROID BUT AFTER PLANTER RELEASE LEFT HEEL . NOT MUCH HELP WAS INTERVIEWED BY SOMEONE HE WAS TRAINING AT TIME AND SAW HIM FOR ABOUT 10 MIN. ALL HE TOLD ME WAS NEVER HAVE ANOTHER CORTIZONE SHOT AND HE DID NOT BELIEVE IN HEEL SURGERIES FOR PF JUST TO STRECH. STRETCHING DOES HELP LEFT HEEL BUT DOES NOTHING FOR RIGHT . NIGHT SPLINT HELPS LEFT HEEL BUT BOTHERS TENDONS AND PERRONEAL NERVE LEFT LEG. MY PODIATRIST JUST SAID TO SAND A SPOT IN ORTHOTICS WERE FIBROID IS LOCATED TO TRY AND TAKE PRESSURE OFF. HE IS A VERY NICE MAN. BETWEEN HIM AND MY FAMILY DR. THEY HAVE HELPED ME GET SOCIAL SECURITY ALSO MY PSHY. HELPED. SHE WANTS ME TO TRY ACCUPUNCTURE FOR PAIN IN LEG AND FOOT, WHICH SHE HAPPENS TO DO TO AND MAYBE TRY PAIN CLINIC. I DON'T KNOW FAITH IN MEDICAL PROFESSION LESSONS EVERYDAY ALL IT SEEMS IS IN AND OUT AND REFERRALS, NO ANSWERS OR REALLY TIME TO GET QUESTIONS ANSWERED. MOST regular mds know very little about pf, and if you say what there doing is not helping, THEY say all in your head. I HAD SAME NERVE STUDY LAST SEPT. AND IT SHOWED NOTHING NOW IT DOES DOESN'T MAKE SENSE HAVEN'T DONE ANYTHING SINCE THEN TO INJURE MOSTLY HOUSE RIDDEN. SORRY TO RAMBLE ON SO MUCH JUST VENTING I GUESS.

Re: fibromatosis of heel nancy -- to Calvin

HURT MAIN on 4/14/00 at 00:00 (018719)

THANKS NANCY I WILL SEARCH.

Re: fibromatosis -- MORE information nancy

Nancy S. on 4/15/00 at 00:00 (018731)

Calvin, I'm glad your podiatrist and family dr. are helpful -- I take it that they aren't the ones who said the pain is all in your head. Yeah, after I posted to you that maybe you'd have to go to Portland to find another doctor, I realized that might be stupid advice. After all, the unhelpful podiatrist I saw is in Portland!
I think the acupuncture is a good thing to try -- there are people on this message board who have been helped by acupuncture, and I hope it helps you too. --Nancy

Re: fibromatosis -- thanks nancy

hurting maine on 4/15/00 at 00:00 (018739)

my podiatrist is very understanding family physician has helped with ssd, but he is a rather rare breed. Keeps trying to blame pain intolerance on depression and has mentioned conversion disorder when i complained of no strength in left foot and having drop foot condition. well the second elctromyogram showed i have nerve damage their goes his conversion disorder. i have had to stay with him because he was first to help me get dissability. have asked him for reccommendation for wheel chair so insurance whould help pay for, but he says no way. so have to buy on own i guess if i want to be able to go up and down street. I see by reading the message board you are quite an encouragement to many people at this sight. keep up the good work and best of luck with the pf. CALVIN

Re: fibromatosis -- thanks nancy

wendyn on 4/15/00 at 00:00 (018740)

Calvin, when are some of these doctors going to figure out that some people are depressed BECAUSE they are in so much pain - not in so much pain because they are depressed?

Wendyn


Re: fibromatosis -- thanks nancy

Nancy S. on 4/15/00 at 00:00 (018750)

Wendy, they must have flunked Logic 101, eh? And how do you like the 'pain intolerance' diagnosis?
Calvin, if you think you need a wheelchair, can your podiatrist recommend it instead of the family doc? You've probably already looked into this, but thought I'd ask Just In Case. Getting up and down the street can come to seem a luxury with these lower limb conditions, but I still see it as a necessity! Thank you for your good wishes --Nancy

Re: fibromatosis of heel

Nancy S. on 4/14/00 at 00:00 (018707)

Hi -- Wish I could answer your question . . . I just did a web search and turned up basically nothing, which no doubt has happened to you too. This must be a rare condition? If so, did your doctor have no information for you? (other than that surgery is not an option)
If no one here can respond to your question, I would go back to your doctor and wrestle the info. out of him (take someone with you who can take notes, while you listen and ask questions).
If this doctor is not helpful, I would recommend finding another -- to get the diagnosis confirmed (or not) and to get the information you need on treatments.
Are you still in a lot of pain, and does it feel different from PF?
--Nancy (also in Maine)

Re: fibromatosis of heel nancy

hurting maine on 4/14/00 at 00:00 (018713)

I HAVEN'T BEEN ABLE TO TURN UP A THING EXCEPT A POSTING IN SURGERY GUEST BOOK AT THIS SIGHT ON MARCH 23, ABOUT A MANS WIFE HAVING SURGERY FOR FIBROMATOSIS. I QUESS PAIN SIMILAR TO PF EXCEPT NOTHING SEEMS TO HELP. WAS ORIGIANLY DIAGNOSEED WITH PF AND HAD PLANTER RELEASE AFTER CORTISONE SHOTS AND YEAR AND A HALF OF NO RELIEF. TOLD DR, AFTER SURGERY NO BETTER AND WAS TOLD I MUST HAVE LOW PAIN TOLERANCE. EVENTUALLY COULD FEEL LUMPS IN HEEL THAT MY FAMILY DR. COULD NOT FEEL AND AN MRI SHOWED NOTHING SO TOLD ALL IN MY HEAD. ENDED UP AT ACADIA MENTAL HEALTH BECAUSE COULD DEAL WITH PAIN NO LONGER. THE NURSE PRACTIONER THERE COULD FEEL THEM AND REFERRED ME BACK TO POD WHO DID SURGERY. HE COULD FEEL THEM AND SAID SOFT FAT TISSUE OF HEEL HAD TURNED FIBROUS AND SURGERY WAS OUT AS NOTHING WOULD BE LEFT OVER HEEL. THEN I FOUND THE MESSAGE UNDER SURGERY GUEST BOOK HERE ABOUT A MANS WIFE HAVING SURGERY FOR. CANNOT FIND OUT ANYMORE. THE MESSAGE LISTED AN EMAIL LINK BUT I CANNOT CONNECT WITH IT.

THANKS FOR YOUR INTEREST CALVIN


Re: fibromatosis of heel nancy -- to Calvin

Nancy S. on 4/14/00 at 00:00 (018715)

Calvin, I just did a search of the message board and came up with numerous posts about fibromatosis -- by Roelinde, whose mother had this and was successfully treated with ESWT, and some posts by Joan and a few others. The most informative ones are dated from mid to late 1999 and some earlier in 2000.
Do a search with just the word fibromatosis spelled just like that, using the search box at the top of this message board page. It should turn these posts up for you, and you can read them yourself and hopefully get some info. you need. I still think you might need to see another, more helpful doctor! What do you think? Good luck to you --Nancy

Re: fibromatosis -- a few more thoughts, Calvin

Nancy S. on 4/14/00 at 00:00 (018716)

By the way, the 'it's all in your head' comment is infuriating. (You're not the first person on this board who has been told that by a doctor, unfortunately.) That's the kind of ignorance that CAN make a person feel crazy! This doctor who told you no surgery for the fibromatosis: Did he then say there's nothing to be done at all? Surely there are treatments or shoes or inserts or physical therapy or Something to help you decrease the pain. If that doctor can't offer you anything, I really do urge you to see another doctor -- keep looking until someone takes enough interest to help, if not cure, you. You may have to be very assertive and insistent to get the right attention.
Are you downeast or up north somewhere? If so, you may need to go to Portland to find someone. --Nancy

Re: fibromatosis -- MORE information nancy

HURT MAINE on 4/14/00 at 00:00 (018717)

IM FROM DOWNEAST, PODIATRIST. 2 HR.DRIVE TO BANGOR. HAVE GONE TO AN ORTHOPEDIC DR. IN AREA SINCE POD TOLD ME AND SEE CAN'T FEEL IT. SO I HAVE ABOUT 3 DRS. THAT CAN FEEL IT AND SOME THAT CAN'T. EVIDENDLY DOESN'T SHOW ON MRI BECAUSE IT IS NORMAL TISSUE TURNED FIBROUS. HAVE WORN INSERTS FOR 5 YEARS PF LEFT HEEL ALSO I BELIEVE CAUSED FROM A FALL 5 YEARS AGO AT WORK. THATS ALSO WHEN RIGHT HEEL STARTED REALLY ACTING UP. FOUND OUT YESTERDAY I HAVE PERRONEL NERVE DAMAGE LEFT LEG ALSO WHICH I RELATE TO FALL AND CAUSED DROP FOOT FOR ME FOR AWHILE BACK IN JANUARY. SAW AN OTHOP. FOOT SPECIALIST IN PORTLAND ABOUT 3 YEARS AGO BEFORE I KNEW OF FIBROID BUT AFTER PLANTER RELEASE LEFT HEEL . NOT MUCH HELP WAS INTERVIEWED BY SOMEONE HE WAS TRAINING AT TIME AND SAW HIM FOR ABOUT 10 MIN. ALL HE TOLD ME WAS NEVER HAVE ANOTHER CORTIZONE SHOT AND HE DID NOT BELIEVE IN HEEL SURGERIES FOR PF JUST TO STRECH. STRETCHING DOES HELP LEFT HEEL BUT DOES NOTHING FOR RIGHT . NIGHT SPLINT HELPS LEFT HEEL BUT BOTHERS TENDONS AND PERRONEAL NERVE LEFT LEG. MY PODIATRIST JUST SAID TO SAND A SPOT IN ORTHOTICS WERE FIBROID IS LOCATED TO TRY AND TAKE PRESSURE OFF. HE IS A VERY NICE MAN. BETWEEN HIM AND MY FAMILY DR. THEY HAVE HELPED ME GET SOCIAL SECURITY ALSO MY PSHY. HELPED. SHE WANTS ME TO TRY ACCUPUNCTURE FOR PAIN IN LEG AND FOOT, WHICH SHE HAPPENS TO DO TO AND MAYBE TRY PAIN CLINIC. I DON'T KNOW FAITH IN MEDICAL PROFESSION LESSONS EVERYDAY ALL IT SEEMS IS IN AND OUT AND REFERRALS, NO ANSWERS OR REALLY TIME TO GET QUESTIONS ANSWERED. MOST regular mds know very little about pf, and if you say what there doing is not helping, THEY say all in your head. I HAD SAME NERVE STUDY LAST SEPT. AND IT SHOWED NOTHING NOW IT DOES DOESN'T MAKE SENSE HAVEN'T DONE ANYTHING SINCE THEN TO INJURE MOSTLY HOUSE RIDDEN. SORRY TO RAMBLE ON SO MUCH JUST VENTING I GUESS.

Re: fibromatosis of heel nancy -- to Calvin

HURT MAIN on 4/14/00 at 00:00 (018719)

THANKS NANCY I WILL SEARCH.

Re: fibromatosis -- MORE information nancy

Nancy S. on 4/15/00 at 00:00 (018731)

Calvin, I'm glad your podiatrist and family dr. are helpful -- I take it that they aren't the ones who said the pain is all in your head. Yeah, after I posted to you that maybe you'd have to go to Portland to find another doctor, I realized that might be stupid advice. After all, the unhelpful podiatrist I saw is in Portland!
I think the acupuncture is a good thing to try -- there are people on this message board who have been helped by acupuncture, and I hope it helps you too. --Nancy

Re: fibromatosis -- thanks nancy

hurting maine on 4/15/00 at 00:00 (018739)

my podiatrist is very understanding family physician has helped with ssd, but he is a rather rare breed. Keeps trying to blame pain intolerance on depression and has mentioned conversion disorder when i complained of no strength in left foot and having drop foot condition. well the second elctromyogram showed i have nerve damage their goes his conversion disorder. i have had to stay with him because he was first to help me get dissability. have asked him for reccommendation for wheel chair so insurance whould help pay for, but he says no way. so have to buy on own i guess if i want to be able to go up and down street. I see by reading the message board you are quite an encouragement to many people at this sight. keep up the good work and best of luck with the pf. CALVIN

Re: fibromatosis -- thanks nancy

wendyn on 4/15/00 at 00:00 (018740)

Calvin, when are some of these doctors going to figure out that some people are depressed BECAUSE they are in so much pain - not in so much pain because they are depressed?

Wendyn


Re: fibromatosis -- thanks nancy

Nancy S. on 4/15/00 at 00:00 (018750)

Wendy, they must have flunked Logic 101, eh? And how do you like the 'pain intolerance' diagnosis?
Calvin, if you think you need a wheelchair, can your podiatrist recommend it instead of the family doc? You've probably already looked into this, but thought I'd ask Just In Case. Getting up and down the street can come to seem a luxury with these lower limb conditions, but I still see it as a necessity! Thank you for your good wishes --Nancy