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My son has Ollier's Disease

summerfun
0 Recommendations

Hi,

I would like to share my story. My son Brayden is 9 yrs. old and we just recently discovered he has Ollier's disease. He has it in his right arm and is showing deformity and we believe he also has it in his right thumb. We had our first appt. with the Hospital for Sick Children in Toronto on July 20/09. Not much information was given to us other than it is very rare. No research has been done on percentages of Ollier's patients developing malignant tumours. The dr. said it's not a small percentage but not a high percentage, whatever that is suppose to mean.The next steps is an MRI and what their focus is that they want to correct some of the deformity so they are hoping they can do surgery and try to lengthen the femer bone. I will keep you posted and let you know how things are going. Any advice or information you can provide would be helpful. It's hard when the disease is so rare and it seems every doctor explains it a bit differently especially with the risk of malignancy.

Explore topics in this discussion:

Cancer Chondrosarcoma Surgery Brain tumors Pain Ollier disease Stroke

24 replies

slummymummy

dear summerfun..... firstly welcome to our website for olliers....and support
secondly I can only say, stay postive for own mental well being and take all the support, loves and hugs from best friend..
Olliers is very hard to find news or any info about the condition.. but after reading some of the blogg on this website, from other mums and patients you will feel alot more safter about what you are dealing with.
Yes operations are available..
Again, keep thinking that the malignancy is very unlikely and you will be monitored by your hospital, and yes it is a waiting game.. God it feels like it, but take comfort from this site and stay strong within yourself.. as you will read from my profile, about my son harry now aged 16 years old, eventually you get your head around the problem and deal with it.
And maybe get more info then the doctors who are dealing with this rare condition....

email back if you need to... I am sure you will...
ask all the questions you need to..
I am based in england, felixstowe
It seems your usa doctors are more happy to operate asap... then the uk ones.... Tight fisted me thinks..

best love, from one mum to another mum....
xxxxxx

Angelgreeneyes4u

Hello everyone! My sister was diagnosed with Ollier's disease in 1977 or 1978...she was around 3 years old. Family went to John Hopkins first and they did not have a clue. Luckily, there was a doctor who had read about Ollier's (it is very rare). Sis has had probably 9 or 10 surgeries. Her fingers are crooked but they funcion perfectly and I must say that her hands are the softest! Same with her feet. Nothing has stopped her.
At age 24, she was diagnosed with chondrosarcoma and a large tumor was found in her skull base. Most of it was removed through surgery at Sloane Kettering(she lost hearing in one ear when it was detached and reattached for her surgery) and then proton beam radiation in Boston several months later. All was going well until spots were noticed.
My sis was diagnosed at age 31 with frontal lobe brain tumors. She had surgery to remove in Boston, where she suffered a stroke. The stroke paralyzed her left side. It has been 2 years since that time and sis has recovered to about 95%. She is back to work, back to driving and pulling her normal pranks!
Keep yourself informed. Don't wait for the doctor to tell you anything. Do research and ask away. No question is dumb for the sake of yourself or your children. If you are not satisfied with your doctor, contact known specialists. They usually agree to see you because Ollier's is rare. Be persistent. My sis had a hell of a time at school when she was younger because kids would make fun of her hands and casts (after the surgery). The teachers didn't know how to address this. I think schools are better about it now; but I still have rage at those kids. Spoilt brats.
y the way, sis also just started her graduate program, so please know that nothing is invincible. All will be okay!

Angelgreeneyes4u

P.S.- We are not promised the future. There is a higher risk of malignancy; but cancer affects so many people; that you never really know. Try not to dwell on this but make sure to get checked regularly, Slummymummy, my mum's from Norwich. Contact doctors in the US. We tried to look if this was a genetic thing; but it appears not so because so many different people from different countries have Ollier's. It's possible it could be a genetic throwback marker (way back).

summerfun

Thank you so much for your reply. The last three months have been hell for us as our son is only nine and it was quite a shock. He is in best hands as he is being seen by a specialist at Sick Kids in Toronto. He just had his MRI and his appt. at sick kids is on Sept. 14th. It sounds like your sister had quite the experience and she is the first I have heard about malignancy. I am nervous about our appt. but will keep you posted. Thank you so very much for responding and I will let you know what happens after Sept. 14th. Lets keep in touch.

elliem123

Hi there, just thought I'd say hello. My son, who is now 20, was diagnosed with Olliers Disease when he was four. He has been amazing throughout his childhood having endured 5 leg lengthenings gaining 22 cm overall. He has now been diagnosed with Maffuccis but stays positive. He is at University in Oxford studying History and Film and enjoys a full and active life. If I can be of any help please don't hesitate to contact me. Best wishes. Ellie

julia101

Hi, Thought i would say hello. I was diagnosed with Ollier's in 2006 at the age of 36. Iv'e had three tumors removed in my femur and tibia and now have been told i have another on my pelvis. I have an MRI every three months to check for differences in size etc but so far its stayed the same.
Best wishes, Julia

summerfun

Hi elliem 123,

Wow...I didn't know that Ollier's could turn into Mafucci's. Well I guess all you can do is monitor very closely and stay positive. How did they come up with this diagnosis? Any extra info you can provide is always helpful....stay strong...sherry-Ann

summerfun

HI Julia,

Thanks for emailing. I am assuming that your tumours are benign? My son is going to have surgery on Oct. 22nd to try and correct the deformity in his right arm. The dr.'s never performed this surgery before so it may not be successful. Are your tumours causing any day-to-day problems and how did you discover them. That's late to diagnose Ollier's. Any info you can provide is great....Sherry-Ann

julia101

Hi,
Its a long story but 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 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

summerfun

Hey Julia,

First of all...don't be scared...we can communicate together and come up with questions we can talk to our specialists about. I will always update you with info from sick kids which is such a reputable hospital of the world and I will ask all your questions. Be positive but I am interested to know where you all are from? I want to know how rare this disease is so let me know where you are...not that it will let us know the rarity but it's interesting to know where we all are from....all stay intouch...brayden's surgery is Oct. 22nd. and with all your help I have alot of questions and I will update you all on the answers...Sherry-Ann, Richmond Hill, Ontario, Canada

julia101

Hi Sherry-Ann,
Im Surrey near London , England. I dont know if there's anybody from England on this site but it would be good to keep intouch and update eachother on our progress.
Take care Julia

pitstop7

Hi Julia,
My 5 year old has just been diagnosed with Ollier's. We live in Barnsley, Yorkshire. I am feeling very information starved at the moment and would be grateful of any information you have on Ollier's. My son has an 18mm lengh discrepancy to his left leg and windswept deformity. We are waiting on our next apt. with specialist to find out what they plan to do surgically etc.

I hope you are well at the moment and are not suffering too much pain.
Take care, Kate x

summerfun

Hi Kate,

Good luck at your next appt. I think the main goal with Ollier's is to correct the deformity. Please keep us posted as to what procedures will be done to correct the deformity in his leg. I think we are all very information starved as no real studies have been done on this disease as it is so rare. Take care and keep in touch.

Sherry-Ann

julia101

Hi Kate
Im afraid there isn't much information out there about the disease as its so rare. As Sherry-Ann says the main goal with Ollier's is to correct the deformity. Im one of the lucky ones who hasn't had any deformity but if we all keep updating on here we can hopefully learn more about the disease from eachother.
I hope your next appointment goes well and keep us updated with your sons progress.
Take care Julia

Slummymummy2

dear kate (pitstop 7) and julia101,
I am louise and live in felixstowe, suffolk, uk.
My son harry aged 16 has olliers, in his humerous ( upper left arm) and pelvis area, fingers, toes and just below the left leg ( if i remember )
I am now waiting this week for a referal from birmingham royal orthapedic hospital, and if robert grimes will see harry. I printed off alot of info from , summerbird, who is getting info from sick kids , toronto hospital. she blog alot of details ref treatment posted. SUMMERBIRD. AUG 8 AT 1.59hrs.
hope this helps... kate , i was born in doncaster , in 1964.
so welcome to the website, nice to have some english girls onboard.
sorry i have just changed my email address, it has given me a nightmare ( I am not very IT , very dinosaur ).
i have email addresses for other girls in the uk with olliers or families members
We are not alone, will try to keep up to date with the site and if i get any news about birmingham, will let you know.
take loads of care, stay strong and positive , any info or news, post it on the site.
love louise, ian, harry and brandon xxxx

summerfun

Hey Everyone,

They day is approaching that my son, Brayden will be having surgery at sick kids this thursday, Oct. 22nd. He is going to try and remove the tumors from the growth platelette in his right arm shoulder to try and correct the growing of his arm and the deformity. I have a list of questions for the dr. and hopefully will get some answers but we are very anxious at this point as Brayden is only nine years old and is very worried. He will be in the hosp. for at least 4 days and the surgery will take approx. 4 hours. I will keep you posted on any info I get and his progress and if the operation is in fact a success. Thanks for everyone's support....I will keep you all posted....Sherry-Ann, Richmond Hill, Ontario, Canada.

Slummymummy2

dear sherry -ann, i will be thinking of you , your son , family and friends, all hoping that brayden comes thru this , and gets the best result possible. I am hoping I will be updating you the same blog on the website, if I can get my son Harry aged 16 the same operation, or similar, to his humerous ( upper left arm ) due to olliers. But together we will fight this and come out a stronger family , and brayden will be a lucky boy to have a super mum like you and a loving family supporting him aswell. I have got an appointment for a second opinion on harrys arm.
So i will keep my fingers crossed over the atlantic for you and will pray all is well on 22 oct.... good luck and god bless... louise , ian , harry and brandon xxx

Slummymummy2

dear sherry ann... Keep us lot posted, we are starved of info... I know you will be off line.. looking after your little man, after the operation.. but we all, will be thinking of you.
best love louise xx

summerfun

I can't thank you so much for your kind words...it makes it so much easier and better when you have support from friends....Brayden is quite anxious and alot of family dropped by tonight to support us and huggs and kisses...it worries me how upset and worried Brayden is....thank you and I will let you know the outcome...I am so glad we have this little support group going...Thank you all for everything...Sherry-Ann

Slummymummy2

dear sherry-ann, Hope the operation went well, and I am sure you are surprised how well brayden has coped and you can all now breath a sigh of relief, but you have a long way forward to recovery, but you are in the best place. I am only thinking strong , positive thoughts that all has turned out well.
Just hang in their, and no crying, only outside visiting hours.. be strong and brayden will have that love and strength from you. Let others help, if you can, or are you like me, doing too much and not letting others have a turn to help you out. You must not burn out, as you are needed ' alot ' of the time, but you cannot do 24/7, you are not super mum. You are only sherry-ann.
so look after yourself, brayden needs you solid, not in bits... so rest and keep the blood pressure low, dont get stressed over silly things... stay cool.
Sorry if all of that is abit personal , but just worried about you.
If friends ask to help, say , yes please...
but i know you will be fine... and give brayden a kiss and hug from england... a special one for a special boy.
lots of love , louise xx

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