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Olliers Desease

sassy
1 Recommendation

My daughter was just diagnosed with Ollier's. She also has Madelungs Wrist Deformity. She's in a lot of pain, and has had two surgeries already.

I feel confident that our doctor here is a great doctor and probably the best for this area, but this isn't the only area in the world and I really would like to have a second opinion on treatment options for each of these issues.

Can anyone suggest a hospital, doctor, or whatever that may be well versed on these things? Thanks.

Explore topics in this discussion:

Surgery Pain Rickets Ollier disease

20 replies

Wyld

Hi, I'm pretty new to this myself, my son has just been diagnosed too (although the doctor used another name for it it's the same condition). He has his first surgery scheduled in the next 2 months. I'm sorry I can't be of any help with suggestions, things are still a bit of a blur.

Take care

sassy

I am so sorry I didn't respond sooner. I had given up hope that anyone was going to respond and didn't realize you had until today.

I do understand the blur you're talking about. It all seems so overwhelming in the beginning doesn't it? I'm eager to hear how you and your son are doing now that you've had some time to let it sorta sink in a bit. I'd love to hear details if you want to share, but totally respect your privacy if you aren't comfortable with that, too.

I'm curious though, what name did they give it?

Hugs to you and your son. My prayers are with you all and I hope you'll post results as things go along. Know you aren't alone. Feel free to email me anytime. sassy_wvgirl@yahoo.com

NicoleZ

Hi Sassy,

my son Ryan is 11 years old and has been diagnosed with Ollier's syndrome a few years ago. He is being followed by Dr Gregory White in Phoenix, AZ 602 2410276. He is adjoinct to the Phoenix Children's hospital. My son has also a deformiy of his wrist and I just learned the term Madelung'deformity that seems to characterise his wrist. He should have surgery this sping to help correct the deformation of his wrist as well as his ankle. Hope this will help.

Nicole (AZ)

ILOVEMYGRANDKIDS

HELLO sassy, my name is joyce my daughter has olliers disease, i noticed somthing somthing was wrong when she was 2 yrs old she didn"t want to walk she scooted we took her to the doctor they took exrays and finally told us she had olliers disease on her right side of her body, her bones in her right leg stopped growing, they watch and done more exrays as she grew older when she turn 5 yrs old they said they had to remove her right foot if not she would never walk, that was a hard dicision to make, i cried and had people praying for this, we went thru surgery and it was alful, when she came awake from surgery she was crying so hard she was in very bad pain her eyes wAS SWOLLEN SO BIG it scared me and my husband so bad i couldn"t do nothing for her but rub her arm, they only could give her small amounts of pain medication , this was a bad experious, they had to give me nerve medication , after all was said and done when her leg was healed she had to leaRN TO WALK in a prosthic her right hand was deformed they done surgery on her to right fingers but it still don"t look good her right arm is shorter than her left arm she is 32 yrs old now she has had a hard life she lives on her own she has a little boy 2 yrs old he is her life if you need to know anything about olliers just ask me anytime i know just about everything about olliers we have dealed with this 31 yrs god bless

slummymummy

dear group
my son harry , aged 15 , was first told in november 2007, he had fiberous displaysia, but after a visit to stanmore hospital ( out patients in london clinic ) we saw mrs debbie eastwood and she finally diaganosed olliers, harry left arm is affected and some areas in his toes , below the right knee joint and some fingers on his left hand , which are a problem this week , as he broke them both , in the door at school.
we are getting some brick walls from the doctors, i want to know. he has been told , they may operate on his left arm, after a 6 month review.
1. is this going to get worse ie cancerous
2. are these ' tumours ' going to change and get bigger ?
3.and what will the operation achieve, ie length and strength.
.
his left arm is shorter by approx 6 inches, and much weaker then his right arm.
harry is due to start college in sept 09 and his final exams in may 09. bless him, he is dyslexic and we have only just got him to deal with that in recent years, since high school with the help of the staff etc
.
hope you lot out their can give some reassurance and some positive replys, as this family need some now , this week, because we made a big mistake and read the details of the internet , and not very reassurring.
.
take care you lot , and keep smiling
kind regards, louise, ( slummy mummy )
xxxx

slummymummy

dear sassy, how are you doing, i am just getting into this support group, also getting into the techno side of it also, the things you learn as a mum, i am listed as 'slummymummy' on this link. i have replied to shaver911 from ohio, he is 43 and lots of experiance with olliers, my son harry aged 15 in suffolk, england, got confirmation dec 08 , he has olliers, at first we thought he had fiberous displaysia and we are due a big meeting we have pushed for with the consultant to find out our options and will ask shaver911 to give me some could questions and requests to put forward, as my main problem is doing this ' active survelliance 'rubbish. it like sitting on a time bomb between 6monthly visits etc. my son harry has a badly affected left arm and some hotspots in his fingers and toes and one just below the right knee joint. he is coping well, i feel like a swan at the moment ( calm on top, paddling like mad below ) shaver911 said we could try to request the operation to remove the tumuour with marrow donation or similar to remove the olliers and he said he is ollier free at the moment
. dear sassy, stay strong and we should all get thru this
i will be back on line most nights apart from sun and mon night this week 8/9/feb. i am in england so i may be a few hours behind you guys in usa.
reply away and questions etc, i am sure shaver911 will help also , i found him very postive .lots of love louise,lan, harry and brandon aged 8 years old

slummymummy

dear wlyde, how old is your son, so sorry to hear you got the news at xmas time, very tough time for all the family. pls read my details as ' slummy mummy ' on this website and i will be in touch. i have just replied to sassy and also read my reply to shaver911 and joyce they are both brilliant, i am living in suffolk , england, so my hours are behind you guys. my son harry aged 15 has a badly affected left arm and this is my main worry we are due a meeting with the consultant soon and will list some questions to put before him, any ideas would love to get them.
love louise ( slummy mummy ) , ian , harry and brandon xxxxx

slummymummy

dear nicole z, hello to you and your family, so sorry to hear you have this rare condition in your family, it is so hard to deal with, as this support network reveals. you posted your notes in oct 2008, about you son ryan, and you refer to madelungs a condition in his wrist and ankle, i am curious about that also, as harry has olliers in his left arm and his wrist is slight curved also. if you can reply back i would be thankful, but again i note you have not replied back on this system for some years, so do not worry if you take time in reading this blog, take care, slummy mummy in england. xxx

slummymummy

dear group, has anyone got a reply back from shaver911
i have problems getting replies and linked into him,
hope the group if getting into the system , as i have not been able to get into any links since last week. keeping blogging group, this is the only good link i have access to.
i have pushed for a meeting march 2nd with our local consultant, mr hudson, in ipswich hospital , and hopefully he can get some firm replies from stanmore hospital and debbie eastwood.
again, if their are any good questions you can suggest i ask when i visit about operations on olliers i would be very grateful.
take care you lot, love louise ( slummy mummy) ian, harry and brandon. xxxx

Wyld

Hi everyone, sorry it took so long for me to get back to here.

Angus finally had his first surgery in Nov 08 (somehow the hospital misplaced him on the list) and is on the mend. The other name that the surgeon gave his condition is really long, unpronouncable and I cant spell it. lol. I did write it down at the time and googled it, which is when I found that it's also known as Olliers.

He's been having regular x-rays since surgery to ensure that things are healing up well, and once healed they'll move on to the next one. He's pretty crushed that he doesn't have the same movement or appearance as before the tumours appeared and we've enlisted the help of a wonderful counsillor to get him through it.

Another two of my four appear to have different skeletal deformities and Angus being the eldest is finding it rather difficult trying to wrap his head around all these hospital visits for everyone. I know I am.

Oh yes, Angus has just turned 10, we are in Australia. If at all possible before operation, ask what treatment plan after there is, ie, what type of cast etc. We had no idea whatsoever what to even expect when he came out of surgery. Mind you, they couldn't tell us if there were going to be pins or anything, thankfully his surgery went through smoothy and it was a simple finger to finger cast and arm splint.

I've never had broken bones, so I knew nothing of the post op care etc.

Don't be afraid to ask questions, don't worry if you think you're feeling like you're being pushy. They generally won't tell you IF you don't ask. It has only been the last 2 yrs where I've become 'pushy' with doctors, and I've been involved with specialists/disability teams for 8 yrs now. (other kids have totally unrelated disabilites)

The other handy thing too is when going to appointments, take a notebook and pen and write it all down. The 'blur' I mentioned earlier I find often kicks in during meetings with specialists, it's becoming second nature now to write it all down, ask questions and write their responses, or better yet, to get them to write down what they mean. Then I re-read when I've had a chance to gather my thoughts and 'plan' for whatever is ahead.

lol sorry for the long post, I hope I've been a little helpful at least.

Alicia

slummymummy

dear alicia, wow ! got your reply.
i get where you are coming from, my son harry is dyslexic and i had to ' step out of my box ' and push for him with the education/schools etc. so again i find myself in the corner of the boxing match and my husband as sponge man ?? so i have to get some questions written up then, the condition you write of is olliers and the full name is multiple endrondromas, i was just the same, could not spell or say the bloody word. we are due to see the consultant march 2, midday , so think of us then. will blog my visit to the consultant and tell the group what happened and if any positive outcome.
hope you son angus is doing well and not running mum around too much for icecream and chocolate. have they said that the op was successful outcome and all olliers removed from that area etc. as shaver911 said, he is now olliers free, that would be a good xmas present ???
hope you are not in the area of the bad australia bush fires, makes our ' little ' complaint not worth talking about when you hear the terrible stories those families has dealt with.
stay strong alicia for all you children , take care
thanks so much for getting back to us, i have checked most days.........love louise, ian, harry and brandon xxxxxxxxx

slummymummy

DEAR GROUP, GOING TO VISIT THE CONSULTANT 2 MARCH , SPEAK ABOUT MY SON HARRY, AND HIS OLLIERS. IF YOU GUYS HAVE ANY GOOD QUESTIONS I CAN PUT TOWARDS HIM, I WOULD BE GRATEFUL, REMEMBER I AM IN ENGLAND, AND MY MAIN QUERY, IF I CAN FORCE HIM AND THE NHS TO OPERATE ON HIS LEFT ARM.
AGAIN , TAKE CARE YOU GUYS, HOPE TO GET A REPLY BACK FROM YOU SOON.
MUCH LOVE SLUMMY MUMMY XXXXX

zionsmom

Hi everyone, my son was diagnosed at the age of 5 with Ollier's disease, he will soon be 10. He has had several surgeries for a limb discrepancy of the right leg, so far the ollier's is only in his right leg-thank god! I am very interested to read about tumors being removed and replaced with bone marrow. I know this is an international site and was wondering if this was something that was only done outside of the US. We live in WV and see a specialist in Richmond Va, who I thought was steering us always in the right direction. He has never mentioned anything about removing the tumors, although, his entire leg is eaten up with them, so if they were removed he probably wouldn't have much left. We are now just monitoring the growth of the tumors and of him. His last surgery corrected 5cm discrepancy but it is now back to 3-4cm. Most of the time he acts like a normal active 10yr old but recently he has been experiencing random pain. We get it checked out of course, but, can't really find a source. This is a very difficult disease to deal with. My heart goes out to him daily and most of the time he keeps a stiff upper lip, but, occassionally he takes on a little self-pitying. It is just so nice to know we are not alone. I am inspired by all the stories. Please share any info that may help

slummymummy

DEAR ZIONSMOM, I TOO AM INTERESTED IN THIS OPERATION WITH REPLACING THE OLLIERS WITH BONE MARROW, HARRY HAS A BIG TUMOUR IN THE UPPER LEFT ARM. SHAVER911 , REPLIED ABOUT GETTING ALL HIS TUMOURS REMOVED AND HE CALLS HIMSELF ' OLLIERS FREE ', VERY INTERSTING, HE IS IS OHIO, USA. I WONDER HOW MUCH TWO TICKETS RETURN TO OHIO IS ????

THAT WOULD BE GOOD THOUGHT, BUT I THINK A DREAM, I AM CHASING ' STANMORE HOSPITAL ' UK AS THEY ARE SUPPOSED TO BE ' THE BEST IN THIS FIELD ', BUT WE HAVE TO DO ALL THE CHASING. STILL AS A MUM, WE DO THIS STUFF.
TAKE CARE ZIONSMOM, ALL THE BEST AGAIN
CHEERS ALOT
LOUISE, IAN , HARRY AND BRANDON. XXXXX

slummymummy

dear zionsmom, i am blogging you now, from two pages, so i am just sending you a reply to keep you uptodate, if you email johnathen shaver on
shaver1010@yahooh.com
he lives in ohia, usa and will talk to you about his experiance and ops etc, he is very open and will answer any questions, he is 43 years old and lots of dealings with olliers.
if you two get together via email and sort things out, I will be so pleased to get you guys together in usa.
i have contact with a lady in england who is 28 years old. so i have someone on my own turf.
take care and reply back when you can
loads of love again, louise xxx

Summerbird

Hi -
This is my first post: my son Max is five years old and has Ollier's disease (diagnosed at age 2). He has some deformity in his hand and a limb length discrepancy of about an inch in his legs. I was fascinated to read shaver911's description of removing the tumors and replacing the tissue with bone marrow... As others have similarly noted, this is the opposite of the "wait and see" advice we've been given so far. I'm very interested if anyone has advice about surgeons who have lots of experience treating this specific disease and how best to time surgery for the hand and leg (limb-length discrepancy). And of course, I'm interested in the concept of bone marrow or stem cell treatments. It would be wonderful to be able to take a more preventative approach instead of waiting for deformity to occur and then trying to fix it. Thanks for any advice!

zionsmom

Dear Max's mom, I got your friend request and sent a rather lengthy message. I hope you received it. We have also been just dealing with the deformities as they occur for the last 5 years. We are awaiting a bone graft with a bone cement that is being used in the UK, Canada, and Australia. Zion's dr. is very excited about this. It is supposed to be approved by the FDA in the US in the next couple of weeks. Zion's doctor has been traveling to Canada to work with it. They call it Kryptonite, so, watch out Super Man, LOL. They will remove most of one of his tumors in his femur, excluding the growth plate, and replace it with this bone cement. He will get a lengthening nail inserted into the femur to acheive some length (it's again 5cm shorter) and when doing this of course they will break it and straighten the femur. He has an issue with his outside ankle, the fibula isn't as long as the tibia so it looks like his ankle is just not there. The Dr. is "ruminating", to use his words, on what to do about this. But it appears he will perform a reconstruction of the ankle. Those are the procedures we are looking at for our son. I don't know if anyone else has had experience with this bone cement, if so, I'd like to hear about them. Also this will be the first time we have dealt with the lengthening nail, the last lengthening surgery involved a Taylor-Spatial frame, which was a horrible experience, but, it did work for a little while. I am assuming this surgery will not be pleasant either but, feel like we have had an education in the last 5 years and know more questions to ask and how to research everything so we are better prepared. I'll post and let everyone know how things go once we know something more.
Blessings to everyone on this site,
Zion's Mom

Summerbird

Hi Zion's Mom!
Thanks so much for your reply. I hope Zion's next surgery goes as smoothly as possible, and that the "kryptonite" bone cement is a huge success! I'll be very interested to hear more about that. I'll send a message to your email as well, fyi, but I wanted to post this in case others have any advice about some possible new treatments to explore.

First, a question: we were recently advised to delay surgery to correct deformities from Ollier’s “as long as possible.” What have others been advised concerning the timing of limb lengthening : when is the best time to do it in terms of age, how much length discrepancy you can fix at one time, etc. ? Any specific advice or warnings about the experience?

Re. development of a new bone cement:
I’m curious whether anyone (maybe someone in the UK?) is familiar with a new “injectable bone” project developed by Dr. Shakesheff of Nottingham University? It sounds similar to bone cements on the market, but possibly better in that it doesn’t necessarily require surgery to use, and could also be used in combination with stem cell treatment. Apparently, it could be on the market in the US next year. Anyone (or anyone’s doctor) familiar with this? (Along those lines: has anyone explored using stem cells as a means of getting rid of enchondromas and correcting growth)? Thanks for posting if anyone’s doctor is familiar with this or has an opinion.
http://www.redorbit.com/news/health/1607702/injectable_bone_polymer_could_e nter_us_market_by_2010/


re. off-label drug treatment with Sensipar (cinacalcet) for Ollier’s:

I’m trying to find info on the safety and potential efficacy of a new treatment plan for Ollier's that was recently suggested to us : the idea is to use a low dose of a drug called Sensipar (cinacalcet) along with a dose of vitamin D. The idea is to promote cellular hypertrophy (and differentiation of cartilage to bone) over hyperplasia (and a state of de-differentiation). In theory, Sensipar may suppress proliferation of chondrocytes (ideally that would mean diminished cartilage tumors).

It probably isn’t possible to know in advance whether it would work at all, but to assess the safety in children, we’re trying to get some info from a doctor who’s leading a study using this same drug for children who have rickets.
http://clinicaltrialsfeeds.org/clinical-trials/show/NCT00195936
If I hear any helpful news, I’ll post it, and if anyone reading this is in contact with any researchers who might have an interest or an opinion about this hypothesis (the effect of Sensipar / vitamin D on cartilage tumors in children) that would certainly be of interest.

Thanks so much -- good wishes to everyone!
Summerbird / Max's mom

slummymummy

Hiya group.... slummymummy back on line.. hope you lot are keeping sane, during the summer break. I read an interesting article about a young boy in england called cody walker, and he has had a leg lengthed by an operation using titanium rod, as the bone naturally grafts onto the rod, and as he was only aged about 9 years old, they used a 'key ' to lengthen the rod as he grew.. so i am positive about his, as it is the only article i have read in a national newspaper in england.
doctor robert grimer of the royal orthopaedic hospital in birmingham , england uk, did the operation...
My harry is now over 6ft tall and will be 16 on monday
still not happy about the ' wait and see ' policy... would love to have the operation done now.. and not then when the nightmare ( if ever ) begins.. but they dont see that , do they...every now and again, it rears its ugly head, when an appointment is due on review etc...or if they say , they have a lump and pain in a hot spot area and the hair on the back of your neck stands up and your'e mind is back on the treadmill of fear and nerves..... still life marches on
will keep an eye on the olliers group.. crack on ladies, cannot let the troops down ...
love slummymummy ( louise ) xxxxx

Slummymummy2

dear summerbird... OMG ! What a message, i am so sorry it has taken me so long to read and reply back to you, i have printed off your post about different treatments, it must have taken you ages to type it out. thank you so much on behalf of everyone who wants to know about olliers and treatment, i will always refer them to your blog... again a big thank you.
I am waiting for a reply back from uk hospital, in birmingham royal orthapedic and will take you info with me. but i am sure the specialist is aware, but just checking...any way, if i start talking about these different treatments, i may start to look intelligent about olliers for once LOL !
Thanks again
slummymummy2.
take loads of care , stay postive and keep blogging
love louise , lan , harry and brandon. xxxx

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