OFD-Like Adamantinoma

Jan1967

My 13 year old son has recently been diagnosed with a Oestro Fibrous Displasia - Like Adamantinoma.  He had an operation in Dec 2014 where the surgeon took a shark bite section out of his right tibia about a third of the shin was removed.  He had a section of donor bone inserted and the front of the shin has been plated.  He has been in cast since the operation, but has just been moved to a half cast so that he can get some physio on his knee to get it moving again but he's still non-weight bearing - it is very painful.  What I want to try and find out is realistically what sort of recovery time are we looking at ?

molliemoo

Hello everyone, 
I am new to this forum, and have just been told that I have OFD-Like Adamantinoma on my right tibia - what a rare breed we are! I am currently in Melbourne, and like some of you, am finding it near-impossible to find information regarding recovery and just what to expect. 

I had a curettage with high-speed burr only 2 weeks ago on the same area, the results they received following tissue sample testing weren't favourable, so here I am preparing for the second surgery in a couple of weeks. 

I'm just wondering - since many of you have been through this - what can I expect? This second surgery is a bigger deal, I know that, in terms of the actual procedure and recovery time. What to expect in regards to pain and recovery and just returning to your every day life?

My surgeon is confident this will be it but I didn't expect a first surgery let alone a second. I was actually on my way back to my life in London so this is all very surreal and my life is effectively on hold. I've been told I'll have a boot for at least 6 months and running, jumping etc, is off the cards for life and in time, I can try swimming and cycling. Was this the case for you? To be quite frank, I'm just glad I have a leg and a life. This was found by accident and I know how lucky I am. I've been in good, positive spirits most of the time, and hope that this continues closer to my surgery date. 

I also asked my surgeon about where to get my check ups once I'm back in London and he said Stanmore - does anyone attend this tumour clinic or have any UK experiences to share? 

Thank you for reading and all the very best for your journey ahead. 

Nickie Philbin

molliemoo said:

Hello everyone, 
I am new to this forum, and have just been told that I have OFD-Like Adamantinoma on my right tibia - what a rare breed we are! I am currently in Melbourne, and like some of you, am finding it near-impossible to find information regarding recovery and just what to expect. 

I had a curettage with high-speed burr only 2 weeks ago on the same area, the results they received following tissue sample testing weren't favourable, so here I am preparing for the second surgery in a couple of weeks. 

I'm just wondering - since many of you have been through this - what can I expect? This second surgery is a bigger deal, I know that, in terms of the actual procedure and recovery time. What to expect in regards to pain and recovery and just returning to your every day life?

My surgeon is confident this will be it but I didn't expect a first surgery let alone a second. I was actually on my way back to my life in London so this is all very surreal and my life is effectively on hold. I've been told I'll have a boot for at least 6 months and running, jumping etc, is off the cards for life and in time, I can try swimming and cycling. Was this the case for you? To be quite frank, I'm just glad I have a leg and a life. This was found by accident and I know how lucky I am. I've been in good, positive spirits most of the time, and hope that this continues closer to my surgery date. 

I also asked my surgeon about where to get my check ups once I'm back in London and he said Stanmore - does anyone attend this tumour clinic or have any UK experiences to share? 

Thank you for reading and all the very best for your journey ahead. 

Stanmore is the best place.

Stanmore is the best place.  They actually have two hospitals, one in London that is outpatients on Bolsover st W1 and Stanmore, where proceedures are carried out.  Stanmore is in middle of revamp and looks like some Dad's Army nissan huts have been cobbled together but it truely is a place of excellance and the very best place to go.  I have been going to both ( right tibia also!)  The go- to Professor is Tim Briggs.  I see his registrar.  There is no better that I know of and I did a ton of research.  I have had two MRI scans at Stanmore and now have appointment through them for nuclear bone scan on April12th at UCLH  ( because that is where that particular scan is done)

Jury is still out as to decision on what I have, they thought Oseteodysplacia but are thinking Adamantinoma and the scan next month should tell them more.  Good luck with your progress.  I know how difficult it is to find any info out there on either.  I was initially seen by a local hospital consultant and MRI there, but got myself referred to Stanmore after research.  They are on the case.  Their MRI was so significantly more detailed that it has flagged up things not seen in local one in Leicester.

 

Halo6199

OFD like Adamantinoma - right tibia on child

My son was diagnosed with OFD when he was 3 where he has the Curretage surgery to remove the tumor. Unfortunately at that time they did not run the stain testing to figure out that it was actually OFS like Adamantinoma (which would have change the surgery type/ procedure).  He was in a cast for 6 weeks, then off and running as a normal 3 year old with check ups every 3-6 months. Everything appeared to be normal until June 2015 when he fractured his right tibia while at daycare when falling on the playground. At that point it didn't sit right with me that a child could fracture a bone by falling on mulch so I made an appointement with a orthopedic surgeon that specializes in bone tumors. In December 2016 we found out that the tumor was back and in January 2016 it was confirmed to be OFD like Adamantinoma. He had a limb salvage surgery on Feb 22, 2016 where they took 60% of the right tibia out and in its place put the left Fibula (vascualrized)along with a cadaver bone for support, 3 plates, 16 screws, and a patella tendon spike in his knee. He was in casts from hip to toes for 5 1/2 months. He started walking again late July 2016 with a walker (completely non-weight bearing until then). He is intense physical therapy but doing well now. He is walking (with a limp as his right leg is slightly longer than the left now) but overall doing very well. Dr's have cleared him to be a normal now 7 year old (birthday in march) however we discovered that while the dr's have cleared him his body is not ready for "normal" activity levels of a 7 year old. 

Apaugh

Halo6199 said:

OFD like Adamantinoma - right tibia on child

My son was diagnosed with OFD when he was 3 where he has the Curretage surgery to remove the tumor. Unfortunately at that time they did not run the stain testing to figure out that it was actually OFS like Adamantinoma (which would have change the surgery type/ procedure).  He was in a cast for 6 weeks, then off and running as a normal 3 year old with check ups every 3-6 months. Everything appeared to be normal until June 2015 when he fractured his right tibia while at daycare when falling on the playground. At that point it didn't sit right with me that a child could fracture a bone by falling on mulch so I made an appointement with a orthopedic surgeon that specializes in bone tumors. In December 2016 we found out that the tumor was back and in January 2016 it was confirmed to be OFD like Adamantinoma. He had a limb salvage surgery on Feb 22, 2016 where they took 60% of the right tibia out and in its place put the left Fibula (vascualrized)along with a cadaver bone for support, 3 plates, 16 screws, and a patella tendon spike in his knee. He was in casts from hip to toes for 5 1/2 months. He started walking again late July 2016 with a walker (completely non-weight bearing until then). He is intense physical therapy but doing well now. He is walking (with a limp as his right leg is slightly longer than the left now) but overall doing very well. Dr's have cleared him to be a normal now 7 year old (birthday in march) however we discovered that while the dr's have cleared him his body is not ready for "normal" activity levels of a 7 year old. 

Halo

It sure sounds like your little one has alot of spunk and it going tocome out of this with flying colors.  He is giving it his all.  Children can be so resiliant and that is wonderful. Give him time and he will gather his strength before you know it.  Prayers going up for him and you.  Hug, Annie

molliemoo

Nickie Philbin said:

Stanmore is the best place.

Stanmore is the best place.  They actually have two hospitals, one in London that is outpatients on Bolsover st W1 and Stanmore, where proceedures are carried out.  Stanmore is in middle of revamp and looks like some Dad's Army nissan huts have been cobbled together but it truely is a place of excellance and the very best place to go.  I have been going to both ( right tibia also!)  The go- to Professor is Tim Briggs.  I see his registrar.  There is no better that I know of and I did a ton of research.  I have had two MRI scans at Stanmore and now have appointment through them for nuclear bone scan on April12th at UCLH  ( because that is where that particular scan is done)

Jury is still out as to decision on what I have, they thought Oseteodysplacia but are thinking Adamantinoma and the scan next month should tell them more.  Good luck with your progress.  I know how difficult it is to find any info out there on either.  I was initially seen by a local hospital consultant and MRI there, but got myself referred to Stanmore after research.  They are on the case.  Their MRI was so significantly more detailed that it has flagged up things not seen in local one in Leicester.

 

Update

Hello Nikki, 

Thanks for your comments--wishing you lots of luck; how was your April 12 appointmen? You sound like you're in good hands which is half the battle. I found out later on that my surgeon worked in the UK for a year so Stanmore sounds like the place where I'll have my follow up appointments. 

I'm pleased to say I'm now home recovering and recently marked my one month anniversary since my surgery! 1 down, 5 to go! Time is whizzing by. More importantly I recieved the happy news that the surgeons are pleased with the margins and are confident that this the end of it. Onwards and upwards. It really does feel like the dark clouds have lifted, I cried buckets of tears from sheer relief. 

Im happy to go into more detail regarding my surgery and actual procedure for anyone who is interested too. 

update us when you can Nikki, best of luck!

molliemoo

Halo6199 said:

OFD like Adamantinoma - right tibia on child

My son was diagnosed with OFD when he was 3 where he has the Curretage surgery to remove the tumor. Unfortunately at that time they did not run the stain testing to figure out that it was actually OFS like Adamantinoma (which would have change the surgery type/ procedure).  He was in a cast for 6 weeks, then off and running as a normal 3 year old with check ups every 3-6 months. Everything appeared to be normal until June 2015 when he fractured his right tibia while at daycare when falling on the playground. At that point it didn't sit right with me that a child could fracture a bone by falling on mulch so I made an appointement with a orthopedic surgeon that specializes in bone tumors. In December 2016 we found out that the tumor was back and in January 2016 it was confirmed to be OFD like Adamantinoma. He had a limb salvage surgery on Feb 22, 2016 where they took 60% of the right tibia out and in its place put the left Fibula (vascualrized)along with a cadaver bone for support, 3 plates, 16 screws, and a patella tendon spike in his knee. He was in casts from hip to toes for 5 1/2 months. He started walking again late July 2016 with a walker (completely non-weight bearing until then). He is intense physical therapy but doing well now. He is walking (with a limp as his right leg is slightly longer than the left now) but overall doing very well. Dr's have cleared him to be a normal now 7 year old (birthday in march) however we discovered that while the dr's have cleared him his body is not ready for "normal" activity levels of a 7 year old. 

So pleased to hear your son

So pleased to hear your son is doing well. Thanks for sharing. His story sounds so similar to mine actually. I had a curretage and then the results were mixed so I had to have this second, bigger surgery. I have a donor bone with plate etc and also a flap (skin, tissue and half the muscle) which was taken from my right scapula. My shoulder has been healing well; I was a bit concerned that I wouldnt be able to wheel myself in the wheelchair but it's been fine. It's all a bit rubbish but like I said I'm so thankful this was found at all and now I can concentrate on getting on with the recovery. 

sugary_snacks

https://csn.cancer.org/discussion/comment/1575488#Comment_1575488

Hi, Thanks for sharing your son's story. My son is close to yours in age. His birthday is Feb 2010. Last year at age 11, he was diagnosed with OFD-like Adamantinoma in his left tibia and underwent wide resection of the affected bone. The doctor assured us that the chance of recurrence was less than 1% and I believed him. So, a year since his diagnosis and surgery, I was taken aback to find out that he has a recurrence. We are now waiting for a date for the second bigger surgery involving both legs, as they will use the fibula from the good leg. The doctor said that he can walk on the good leg after only a few weeks. Did you find that your son could put weight on the good leg soon after surgery? I'm curious as to how long it took your son to return to a normal level of activities and was he able to resume sports a couple of years after his surgery? How have things been for him and you in general? How often do you do checkups?

sugary_snacks

https://csn.cancer.org/discussion/comment/1571886#Comment_1571886

Hi, I'm curious to know how your journey has been since your second surgery in 2017. My son is waiting for his second surgery and I'd love to know what to expect. I know each case is different but it helps to have some idea about other people's experiences. Hope that you have recovered fully and all is good!

sugary_snacks

https://csn.cancer.org/discussion/292548/ofd-like-adamantinoma

Hi, I wanted to know your son's update. Has he done well since his surgery in dec 14? He must be around 20 years old now. I would love to know more about his journey if you would please share his recovery story and how things have been. My son was diagnosed last year at age 11, had a chunk of his left tibia removed and is going in for his 2nd surgery now where they'll replace the tibia with the other leg's fibula. So, I'm curious to know how other young people who have gone through are doing 7 years later.