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ollier's disease

ILOVEMYGRANDKIDS
4 Recommendations

my dauthder has olliers disease,when she was born she was fine she looked fine she was a beautiful baby,
she was born in 1977 . when it was time for her to star walking, she would sit down on the floor and scoot, we wondered why she did'n try to walk,when she was 3 she was finally walking but with a limp,also my sister noticed that her left too fingers were growing outward from each other . we then took her to a doctor and they sent her to a specialist, they then run test on her xrays after another an then told us some alful news she had olliers disease we cried so much it was un real to me her bones had stopped growing on her right side they were in knotts so they followed up on her dease until she was 5years old and had a dicusion with us about her condition here we went again it was a alful thing to have to thing about doing they wanted to take her right foot off because they said she would never walk because of her short lenth of her right leg, so here we went again this just was to hard we did not know what to do we prayed about this but i just did not want her to lose her foot , but i wanted her to be abje to walk so so she had the surgery; all my it was alful when she woke up from surgery she started crying so loud i did not know what to do my nerves got so baD THEY HAD TO GIVE ME A NERVE PILL AS TINA HEALED THEY SENT HER TO A HOSPTIAL TO LEARN HOW TO WALK IN A ARTIFICIAL LEG; IT WAS REALLY HARD FOR HER TO LEARN TINA HAS REALLY BEEN THRU SOMETHING IN HER LIFE SHE IS 31 NOW SHE HAD BAD EXSPERIENCES IN SCHOOL PEOPLE WAS SO CUREL BUT ONE THING SHE IS SO BEAUTIFUL AND SHE HAS COME A LONG WAYS IN HER LIFE WITH THIS ALFUL DISEASE SHE HAS BEEN MARRIED ONE TIME FOR 10 YEARS BUT DIDN'T WORK OUT WORNG MAN,I KNOW SHE WILL FIND HAPPINESS SOME DAY WITH THE RIGHT MAN OR FRIEND IF ANYONE NEEDS MY DAUGHTER'S HELP ABOUT THIS DISEASE EMAIL ME WE KNOW ALL ABOUT THIS MY NAME IS JOYCE I HOPE I HELPED SOMEONE. GOD BLESS

THANKS FOR ANY Replys BACK
By ILOVEMYGRANDKIDS

Explore topics in this discussion:

Cancer Surgery Pain Maffucci syndrome Ollier disease Fractures

31 replies

shaver911

I have Ollier's as well, 43 years old now. My parents discovered it the same way, I would scoot across the floor instead of crawling or drag my left leg, small growths on my left hand. Just a horrible disease. 9 surgeries latter, last one when I was 17, I am tumor free. While I would never have wished this on myself, I am proud of what I have come thru and the kind of person it made me.

ILOVEMYGRANDKIDS

hi shaver911 thank you for responding, may i ask how many tumors you had? did you have to have a aputation? my daughter has told me she has about 200 tumors she has one on her right hand to. shaver my daughter tina has been thru so//// much she is 32 now she has it so hard so unhappy it would be so great if somehow you could talk to her maybe in a letter or phone call her phone number is 336 964 8898 sometimes she runs out of day time minutes you can get her at night after 9pm i have not seen her in a few days so if you call her tell her you found her on the computer, i really would appricate this she has been wanting to talked to someone that has this disease it is a very rare disease she wold love to talk to you her name is tina davis THANK YOU SO MUCH Tina"s mother joyce

slummymummy

dear shaver 911, nice to talk to you via this support system, and to speak about olliers and tumours and to get some info about it, we are new with this condition, we were told in dec 08 , but only just started checking on the internet and now just got our heads out above the clouds ??? my son harry aged 15 yrs has a weak , short left arm and some tumours in some toes and just below the right knee, and some fingers ( he broke them last week in school ) i have posted a reply back to joyce, but not sure if you can read it ??????
.
i have asked joyce some very direct questions, so hopefully she will put me in the right place
i have given joyce my email
louise.lynch57@ntlworld.com
take care shaver, love louise , from felixstowe , suffolk , england. stay positive xxxxxx

shaver911

Mrs. Tina's Mom,

Please offer your daughter my email address - shaver1010@yahoo.com. I would be happy to communicate with her.

To answer your questions - I had a very large tumor in my left femur wich required surgery when I was in the 9th grade. Three of my fingers on my left hand were littered with tumors, my ring finger had so many procedures done on it that it is now crooked. I still to this day have very minor tumors in my left toes.

shaver911

Louise - So sorry to hear about Harry's condition. I broke three fingers on my left hand in the 6th grade, got them caught between two desks at school. Normally it would have shattered bones but in my condition.... Lousie, I have had a dozen surgeries to correct what Olliers did to me and have come thru it like nothing ever happened. It is correctable before it becomes a problem. I had a great doctor and while the surgeries were painful, I am perfectly healthy today. What are the options the doctors have given you? I've been x-rayed so many times I glow in the dark. Harry's a one in a million kid and Olliers can be beaten. Keep me posted.

slummymummy

DEAR SHAVER GOOD TO HEAR FROM U. I AM ON MUMS COMPUTER AND THE KEYBOARD IS CRazy. will talk better on my keyboard. iam on line tonight at 9pm british time to joyce. you sound similar to my harrys condition. worried about the advice about operation, on the fingers, but due an appointment with the doctor in march to will speak then about it. how old are you and how long have you dealt with olliers. are you in england, sorry to ask personal questions, but if you want to stay private, i understand.i am in england, suffolk. due you find the health care undestanding, we may visit stanmore for an arm operation later this year 2009. any hints or pointers. how do you monitor the tumours, if they manifest etc. keep safe and talk later.

shaver911

Slummy - Please do not ever hesitate to ask me questions regarding my experiences with Olliers, I want to help so ask away.

1. I am 43 years old now. My parents noticed strange lumps on my fingers when I was 1 year old.

2. I do not live in England, Akron, Ohio, US.

Harry's Olliers condition will become static once he stops growing. But it is importatnt to get those tumors out of his body. (Look up Malfucci syndrome) My doctor very simply removed the soft tissue tumors and replaced it with bone marrow, either mine or from a donor. The tumors shrank almost overnight and have never come back. I also had a tumor in my leg like Harry. that was the least painful of the surgeries but also the most complicated. Truthfully, I think the whole ordeal is worse on the parents than on the patient. I have 4 kids now and cant imagine the anguish... You need to find a doctor that will remove those tumors and the Olliers will go away.

Take as much info to the doctor as possible. Until I was 12 my doctor called my Olliers, GDK, God Only Knows. So do some prep work for the doc.

slummymummy

dear shaver, wow ! what an email from you
so you can operate before the condition gets worse, never thought of that one, brilliant idea ! yes i agree you have to check out the doctor, cant have an 'rooky' working on my son, bless him. but getting a donor would be good and even better if i could be his donor, i would feel i have taken some of it away and suffered abit with him, god that sounds so 'high and mighty' but you know as a parent , that how it goes. and nice to here you have children, its reasurring.
before your operation, was one limb shorter then the other and then after the op , was the limb nearly normal length ???? i have just read your last email to my husband, from last week, we thought harry would have a shorter life, and you have just given up the hope and positive email we need , today and this week, fantastic, hope the weather in ohio shines on you shaver, brilliant, will talk to joyce now , best love , louise, ian , harry ( aged 15 with olliers, )and brandon ( aged 8 hopefully without olliers ) xxxx

slummymummy

dear joyce ( i think ) i have just posted a reply to shaver and it was a really positive email to him ( i think this is going to joyce ) he has given me the best reply about early operation to remove the tumours and this is so positive, before the tumours take hold, and ineffect, defusing the time bomb i thought i would be sitting on, my husand ian calls me a control freak, i think i am just organised ,same thing, just different description.
joyce talking to you and shaver has calmed my head down, i was going nutty over this and now i can talk to my doctor about operations with abit more knowledge before we go for discussions, cheers group
talk later again louise xxxx

slummymummy

dear shaver 911, we are due a meeting with harrys consultant in march, hopefully on the 2/3 or 16/3. and i need to ask to questions etc. any ideas or how to word my concerns ?? i also have a another son called brandon , aged 8 , do we need to be worried about him, the doctors keep saying, he will be fine and he would not get olliers, but this is a worry, should we request brandon is xrayed/mri scan also.
also how do we request/force harry is operated on without sounding to panicked by the whole sitution and condition. do you think going private health care is an option, ( but i think difficult as we are 'precondition ).
can you think of any more questions i need to put forward ie the perecentage of harry's tumours turning to cancer etc, i feel they are going to reply 'piece of string , sorry to sound rambling, but hard to write it down at times.
harrys arm is approx 6inches shorter , and getting more noticeable in my eyes has he gets taller, he is 5'10 at the moment and growing more and more.
thanks again shaver 911, do appreciate your replys
and we laughed at your name ' GOK ' god only knows.
all the best , louise, ian ,harry and brandon, xxxxx

slummymummy

ps , shaver 911
have you heard of madelungs wrist deformity
just about to research on the internet
bibibibibi

shaver911

Slummy - I only have a fwe minutes but didnt want to leave you hanging until tomorrow.

1. my donor marrow for my leg surgerycame from a cadaver as I recall.

2. why wait for Harry's tumors to become cancerous? get them taken care of because they will make his bones weak.

3. do not worry about Brandon, Olliers is not genetic.

I will type more tomorrow, on my way to my daughters basketball game.

slummymummy

dear shaver 911
sorry i have taken so long to post back to the group
but i have just found out how to get back to this section of the group. i have got a reply back from sassy , i am sure my computer is getting old, so getting a new bit next week ??
dear shave 911, i am meeting our consultant 2/3 and hopefully will get some positive feed back from him, etc, i have got some good questions i want answers back on etc. so will post the group, after the meeting, as sometimes i feel you lot are the only group of people that totally understands what i am bleeting , on about etc. i am keeping my fingers crossed that they will entertain the idea of operating sooner , rather then later. cheers again gang, again take care, talk later, hopefully after monday 2/3
with love and respect, louise, ian , harry and brandon
xxx

slummymummy

dear group
just to keep the 'kettle boiling ', still got our fingers
crossed about the meeting on monday 2/3/09. with the consultant in our local hospital , ipswich, suffolk , uk.
please keep your thoughts positive, for that meeting , and we get a good response from our requests.
talk later and will keep you all updated
best love to sassy, nicola z, joyce, shaver 911 and all the rest
louise , ian , harry and brandon. xxxxx

cyberbat

Hello, this is my 1st post, I have a 23 yr old daughter that was just diagnosed with ollier's syndrome / disease. She has the tumors pretty much all over except in her right leg. Hips, ribs, arms, left leg, scapula, in her spine, and some kind of spot on her skull. She gave birth to my 1st grandson the 1st of march, via emergency c section. Since then this was found. At first we were told it was a cancer, after bone scans, Xrays, etc. We were finally sent to a good bone surgeon in Seattle WA who performed a bone biopsy and removed a tissue growth from her side (was not cancerous). The bone sample was sent off for a 2nd opinion & this is what we were told she has. We have since been sent home with very little information, mainly just being told that it has to be monitored (not even how often) pretty much that everything is all right unless she starts to experience pain (which she has been already) How do you get any information on this?? She often experience "growing pains" as a child but this was never found. I am trying to reach out for any information that could help her and us get through this. This is my only child and I am at my wits end, everyone is happy that it's not cancer (I am too) but now what?? I want her to be there to raise and see her son grow. I have been searching and found this site. ANY help would be appreciated!!

DSHORTY

Hi.. My name is DJ, 17 years old. I was diagnosed with Olliers disease when I was 2. I have tumors in every finger except my thumbs, and on my middle finger left hand I have to. I have tumors all over both hands, not big, but very noticeable. I also have problems with my hip, I'm in extremem pain every single day. I was wondering if there was anything anybody could tell me to point me into the direction where I can get something done to my hands. I'm 17 years old, and sadly it's getting to the point where most of the time I can't even use them. I want to be a musician, and I've played guitar for 11 years. But lately these past couple years I've hardly been able to pick it up, and if I do it's a very very short time. Don't know if I'll sign back on here, so if anyone has any info for me please email me.

d_shorty52@yahoo.com

Thanks so much and god bless you all.

zionsmom

Dear cyberbat,
My son is 10 years old and has been diagnosed with Olllier's since the age of 5. He has experienced deformities because of this disease and has had to have multiple surgeries. I have read that it is usually found at a very young age because the deformities are noticed and they get investigated, which is how we found his. If your daughter grew normally and didn't have problems my guess is that she just has to have the tumors monitored. Ollier's affects the growth of bones and once they have stopped growing, although they are still there, they possibly won't cause any problems except to make her more susceptible to breaking a bone with a tumor or maybe pain. I have been told that once he has stopped growing he will just need frequent monitoring because of the risk of his now benign cartilege tumors turning to malignancy. Different sites say different things but the percentage of this happening is somewhere around 35-50% once a person with Ollier's reaches middle age. If the tumors are watched closely changes in them can be detected and caught early.

I hope this helps a little. I remember what it felt like when the first x-rays were shown of my son's leg. It appeared to have what looked like to me big cancerous tumors all over his right leg, but, the doctors assured me that it was benign caritlege tumors or multiple enchondromas (Ollier's disease) and after biopsy the diagnosis was confirmed.
So, hopefully your daughter has reached adulthood and escaped all the ravages this disease can impose while she was growing. Keep a close watch on the tumors and enjoy your new grandchild.
Best of luck
Zion's mom
if you would like to reach me via personal e-mail it is rmann33@gmail.com

slummymummy

hiya gang.... so sorry i haven't been on line...
first hello to zions mom.. hope he has been keeping good lately and out of the wheelchair after his last op.. and maybe finally enjoying a summer break from school.
harry had is 16th birthday 10/08 when you last blogged the site, strange eh! interested in what you blogged about the chances of 30/50 % changing to malignancy. we are under active survelliance, with our local hospital, i read an article in the daily mail, l national newspaper about a young boy called cody walker , aged approx 9 yrs, who had a titaniam rod fitted in his lower leg , with a special key, which was turned on a regular basis , when he visited the hospital to lengthen it. Bone fixes to the titanium , very well, but his foot will always be approx one size smaller then the other foot....
dont know this will happen to harry, with his left arm, it is very short now, as he is 6ft tall his left hand is small compared to his right arm, and he often moans about pain in the hips as we have now been told he has 'hot spots ' in the top of the right one. GREAT !
again you have got to stay positive and keep and very careful eye on them.
.................
take care and best love louise
ps i am now on facebook louise lynch, felixstowe
catch me their if you are on facebook xxx

summerfun

Hi Everyone,

My son Brayden was just diagnosed with Ollier's disease. He is 9 yrs. old. We just had our first appt. at Sick Kids Hospital in Toronto. He has it in his right shoulder/arm and his arm is quite deformed. We are now waiting for him to have an MRI and the dr. is hoping to do surgery to lessen the deformity. It's scary because you hear so much about malignant tumours and every dr. I have talked to says something different. The specialist at sick kids told me that because the disease is so rare they have not done any studies to figure out how many Ollier's patients are diagnosed with cancer. He said it's not a small percentage but not a large percentage either. I will keep you posted on how things progress.

slummymummy

Hiya everybody.. hope you lot are staying strong and taking the support and hugs you get offered by friends and family when you are feeling low and lonely..
we all need a hug ...
.
This thing constant question in our heads... can this olliers turn to maligancy.... if anyone can get a clear answer on it. I would love to know it.. feels like russian roulette..
But the main feeling i get , it is low percentage.. and we have to keep feeling that it is a low percentage.. as you will be eated up by the worry..
Keep yelling loud and strong at the medical people and keep them in your pocket, so they are monitoring our children on a regular basis, incase this olliers does kick off.. nasty little blighter....

best love to you all.... louise aka slummy mummy.xxx

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