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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

gally

It is a long way to travel, but I see patrick boland at sloan kettering in nyc. Perhaps they could give a referral-- I don't know if Lake Placid is within striking distance(I know there is no direct route) but when I had my fracture(which led to the diagnosis) I was treated by Dr. Bullock who with the radiologist where the ones who discovered and made initial findings with regard to this. Dr. Daniel Bullock has been praised by every doctor who has seen my fracture for his work, but I know this is a rare disease, and he is an orthoped. surgeon, but is exceptionally bright, kind and capable. He went to school at Dartmouth--and so called there when they found my lesions. Perhaps he can find someone in NH?

NHmommyneedsDR

I need help- I was diagnosed with Ollier's disease at 2. I am now 25 years old. I've had over 10 surgeries- each surgey i've had multiple places worked on. (about 30 different tumors)- mostly in my hands. Ive also had surgery on my right lower and upper arm as well as my right shoulder. I havent seen a Doctor in over 3 years. I know i need bone scans and x-rays done. (Im in a lot of pain)- I also need surgery on my right leg. BUT WHEN I CALLED MY DOCTOR TO MAKE AN APPT......I WAS TOLD HE RETIRED! He did not refer me to a new doctor! I know have NO DOCTOR! - If anyone can help me...please-write me. I have a 3 1/2 year old daughter and a 5 weeks old newborn, baby girl. I cant even think about not being around to see them grow up. I live in Derry, NH , US. -my e-mail is

sfblaser@comcast.net

thank you

cyberbat

Hello! Thank You so much for the info...I have not been here in a while. My daughter Terra has been going to Drs. in Seattle (Virginia Mason and University of WA) with another appointment next month. We still have no regular maintenance schedule (but did just complete more scans / tests). I have gotten more information on the internet then from the Drs. thus far. We have been told that she does have active areas in her shoulder and ribs. I have been very worried as she has been experiencing severe arm, hips, and head pain. There is a small tumor on her skull. We have been told that she isn't fitting into the normal category, as she was diagnosed at 23, and they are amazed that she has not had broken bones as a child. She has now had fractures in her hip and in her ribs. They think having the baby brought this to the forefront. She does have a ridge / ring visible on her left arm and has raised skin lesions on her legs which they also attribute to Olliers. University of WA. has been talking about the possibility of maffucci's syndrome due to the aggressiveness of it. I am trying to think positive on this and if we can just stabilize this am hoping that it will settle down. I am unsure whether they will want to do another bone biopsy. She is having more pain then she has ever had in her life. I have told her about this site and she is planning on joining as to have others who actually can understand what it's like. I go back and forth between panic (I'm her Mom) and everything is going to be OK. There has been talk of filling in the tumors with bone marrow, but I don't even know what match requirements there is. I would think after 7 months I would know more especially with all the Drs visits but I don't. I feel for all of you. Thank you Zions Mom! My thoughts are with your family as well as all of you trying to find out answers and help your children. I also find it informative listening to shaver911 Mummakaren & Julia. Knowing that there are adult people living and dealing with this disease gives me hope that it can be done! Keep Posting! Take care All & I'll check back later! cyberbat/ aka / Amanda
PS I am LOVING being a Grandma! There is a very good chance he will be my only one as she might not be able to have anymore....so he will be very loved and probably very spoiled!

Slummymummy2

dear gang, I am in the uk and waiting for a reply back from birmingham royal orthapedic hospital ,and to talk with a guy their called robert grimes, his specialized field is the hips and pelvis area, apparentley.
My harry aged 16 , has a very short and weak left arm, also in his hips /pelvis area so looking forward to a reply from them , if they are happy to see harry this side of xmas.
julia101, hope you are well and getting this message, also the othe lady in barnsley, my old home ground. I was born in doncaster, but now live in sunny felixstowe in suffolk. talk later ladies..
best love slummymummy2. louise xx

Mummakaren

there is no reason why she should not be around for years to come. I am 36 years old and have lived with Ollier's disease for a many years.
I have found that in my adult life... if My hand hurts too much I have found a doctor who will just go in and fix the problem. It is just a matter of finding he right doctor that will listen to your daughter.

Slummymummy2

yep, know the feeling, my harry in uk, aged 16 has a shortened left arm , with olliers in the upper humerous and we are thinking about surgery, but how much this will affect his movement.. so any positives about arm surgery... will they use the external fixator.. would love to get any top tips...
best love lou x

Slummymummy2

Just to update the site... on olliers
i am hoping we have got a referal to birmingham royal orthapedic hospital and we will get a postive response this time... but again, must not build up our hopes and they have been smashed before..
will keep you all posted.
best love louise... xxx
PS NEARLY XMAS....

Slummymummy2

hello gang... sorry this is slummymummy2... i have was very stupid.. i changed my email address and when you get to my age .. it is a nightmare
my new email is...
louiselynch123@btinternet.com
tried to get julia101 in surrey, so will hopefully get her on reply back..
hope you are all keeping well.
best love louise xxx

julia101

Hi,
I was diagnosed with Ollier's in 2006 at the age of 36.
When i was 10 i injured my knee, i was taken to hospital but none of the doctors knew what was wrong. They thought i had pulled my hamstring.
Then when i turned 20 and i was still having problems with it, i couldn't straighten my knee as the pain was unbearable. They thought my hamstring needed stretching so had an operation to lengthen it. This didn't work so in 2006 at the age of 36 decided to do an MRI which is when they found i had 3 tumors which had been wearing holes in the bone. I had them removed and bone gratfs done. A couple of weeks later i was told that it was Ollier's disease and since then have had scans on a 3 monthly basis. Then 2 weeks ago i discovered i had another tumor but they say it doesn't look malignant at the moment. I also have pain in my fingers so im waiting to have some xrays on them.
So it looks like i have always had this, just didn't know until a few years ago. I have so many questions but there's never enough time to ask all the questions or, i think of questions on my way home from seeing the specialist and wished i'd asked. Its nice to find other people with the condition and share stories and maybe get the answers we need. Its scary sometimes, never knowing what lies ahead but i try and stay positive.
Take care Julia

kdsmom

This is the first time I've seen anything like this! My daughter was diagnosed with Ollier's at 20 months, after a chest xray at a local hospital appeared to show a broken bone. The hospital called the Social Services, assuming our daughter had been abused. Luckily, we were referred th Childrens Hospital in Philadelphia by a friend, and after many tests and many doctors, we were told it was Olliers. Katie is now 13 and has had 4 operations for leg lengthening. Her enchondromas are all on the right side of her body. Her arm is affected, but is functional, so we've left it alone. Katie is amazing, and we are so proud of her. I'm so glad there is somewhere to turn for information,
the doctors tell us facts, but the human factor is just as important!

slummymummy

dear gang..... If you have good or bad news you need to share about olliers... blog away on this support system... as I dont know of any that is 'red hot ' like this one.. as we have agot a good link of people on this system.. and I think some of the medical people we talk to.. unless they are very expert in this field... dont know anything about olliers much themselves, apart from the same webpage we have all read on the internet.... which is soo confusing...and full of medical terms...
Take care ..... best love lou xxx

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

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 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

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

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.

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!!

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

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

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.

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