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    Old 05-05-2004, 10:33 AM   #1
    jonsmom
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    bone cyst ubc

    My son has a UBC or more commonly known as non malignant bone cyst. It is in his femur at the top near the hip, he had surgery in august when he fractured and they found as a result. He has donor bone, rod, plate and screws through the growth plate.
    Now they say it not healing correctly and they want to do more things
    like a sonogram charge machine injections and more surgery. If any one else with a child is going thru this I would love to hear from you and know about your experiences and suggestions.

    thanks jonsmom

    Last edited by jonsmom; 05-05-2004 at 10:36 AM.

     
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    Old 07-14-2004, 11:30 PM   #2
    ajhanson
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    Question Re: bone cyst ubc

    Hello, my son has just been diagnosed with a cyst in his femur (near the top). We are scheduled to go see a specialist and know that typical treatment is steroid injection or surgery. But I would like to know if anyone has heard of any successful alternative therapies for treating such a condition. Thanks.

     
    Old 07-17-2004, 08:14 PM   #3
    jonsmom
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    Re: bone cyst ubc

    the most common alternatives that i know of are the steroids and also
    shooting donor bone in - this usually still requires day surgery.
    it will depend on how bad they feel the cyst is. if the bone breaks (this is
    the most common way that this cyst is discovered) surgery will be required
    to stabalize and then you are looking at a minimum 12 week recovery.
    my son still has not been released to full activivity and he had
    surgery 11 months ago. also when my son broke this he had to have the
    donor bone rod and plate thru his growth line and since he is a child it will
    all eventually need to be removed another minimum 12 week recovery.
    so ask as many questions as you can and if they think steroids will help
    remember it could be lots worse.

     
    Old 07-22-2004, 05:34 PM   #4
    jonsmom
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    Re: bone cyst ubc

    just a couple of things. be sure what kind of tumor your son has.
    if he does not have a cancerous tumor and you are seeing an oncologist
    he will get lost in the shuffle as not as important of a patient. we see a
    childrens orthopedist at the local childrens hospital but another women
    we met started out at an oncologist and finally had to end up seeking another doctor. also what kind of tumor will decide the treatment.

    also how old is your child? i am curious if they are telling you multiple surgeries thru childhood why?

    keep me posted.

     
    Old 08-04-2004, 09:28 PM   #5
    ajhanson
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    Re: bone cyst ubc

    We talked with a specialist who is a member of a local group called the Institute of Limb Preservation. They are a group of specialist that deal in bone disorders. This specialist told us that he is highly confident that the tumor is benign but won't be absolutely sure until they biopsy the tumor during surgery. It may be a type of tumor that is recurring and in that case he may need to have multiple surgeries throughout his adolescence. But the specialist said that he has seen good success with the drug fasomax which is also used to treat osteoporosis. Some of the patients on fasomax have not had to have any further surgery. This specialist uses a surgical technique where all the surgery is done through a 1/2 inch incision and is guided by flouroscopy (xray). He also uses a bone graft material that is very quick to heal that combines human growth factor and some form of calcium. We are scheduled for surgery next week and it will probably be outpatient surgery. We also investigated Traditional Chinese Medicine to see if it offered any alternatives but did not find any one who had treated any thing like this.

     
    Old 09-10-2004, 06:34 AM   #6
    debbsd
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    Re: bone cyst ubc

    hi i have a son who has a cyst in his hip bone it was very big and he has broken it this was in march he is 7 now was 6 when we were told he may have cancer we have not been told much at all he hasnt been in school for 8 months for he has been to ill he is very white and tryed now they say he hasnt got cancer cos this one doctor in london looked at his mir results and said that its a bone cyst there has not been a byopis done on him i was pleased its not cancer but i dont under stand why they havnt done a byopis
    he can only walk 6 streets up before he hurts so we are still using his wheel chair he has still got the cyst in his bone and there is talk about an op to remove it but that all it is talk no one is doing any think about it is this normal can any one tel me if this is how it goes we have asked the doctors what has he got and will it be with him all ways they just say they dont no what it is he got or how it will effect him in live please any one who have the same as may son let me no if this is right thanks

     
    Old 09-10-2004, 05:19 PM   #7
    jonsmom
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    Re: bone cyst ubc

    My son had a (UBC) Unicameral Bone Cyst which was discoverd when he broke his hip/femur. It is a high break of the femur but not into the hip and socket. He was put in traction and immobilized until surgery. The cyst was removed and donor bone put in. This normally is radiated bone from a cadaver. Then a rod, plate and screws were put in to stabalize while healing.
    It has been over a year and we still have the hardware. They will eventually remove the hardware when they feel that the bone can support the weight with out. A biopsy was done during surgery to be sure that the diagnosis was correct. We were never told that this was cancerous, but I do know other parents who were put thru the agony of thinking it was. The recovery time for this operation is approx 12 weeks 6 weeks no weight and 6 weeks
    50/50 weight. Also physical therapy is done for about 10-12 weeks.
    You should research UBC and then ask your doctors. UBC is basically bad bone
    or bone that never devloped correctly. We were told people have this all the time but that it is more common in children and that we just had the misforture to have it in a bad spot. If this is UBC then the break cannot heal because of the tumor. This would explain some of the pain and exhaustion.
    The tumor will eventually have to come out. Depending on the location of the break it is possible that because of your childs age they are wanting to wait. My son had to have his growth plate breached in order to repair the damage. I hope this information is helpful and I would love to hear from you again.

    Jonsmom

     
    Old 09-11-2004, 05:36 AM   #8
    debbsd
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    Re: bone cyst ubc

    thank you it was nice to hear from some one who new a bit about this cos we dont no a great deal we are back at doctors on this thursday to see how his bone is doing he will have a nougher xray and the doctor will see how much its filled up he has it right on his right hip top of femur and this was were he broke his bone the doctors called it a hip fractur through the cyst
    he was on tracson for 5 weeks and they had to put a pin in his bottom leg below his knee to sort the tracson out i cant remember what they called this
    then he was in a boby cast for 6 weeks then no weight ber for 10 weeks he can weight ber now but is only aload to walk he is only 7 and he finds this hard he has just had more blood work took and we should get results next week how is ur son now and have they told u if its some think that may come back now they have removed ur sons cyst i would like to hear from u again thanks for the time u take

     
    Old 09-14-2004, 06:09 AM   #9
    ajhanson
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    Re: bone cyst ubc

    Our first orthopedic surgeon came in and said, "this is out of my league, I am going to give you to the best guy to handle this here at Children's, he is an oncologist orthopedic surgeon. The doctor came into the room and described the tumor as fibrous dysplasia, a recurring genetic mutant that would have to be completed only with surgery. He proceeded to describe the procedure to our son and he and I. He said, "we will wait until we get in there and I will either use a rod, screws, plate and/or graft this with donated bone, after entering the area." He said that our son would have a 5-6 inch incision and be in the hospital for up to 5 days and 3 months on crutches and 6 months recovery. He also stated that Tyler would have to have this surgery REPEATED EVERY TWO YEARS UNTIL HE WAS 17! We asked him if this was the ONLY option and he replied, "it's that black and white, no other options out there" we asked if there was any alternative choices and he said, "no." He then asked him how long he has been doing this procedure and he said has done MANY of them over the past 17 years.

    I remember getting in the car, all of us crying, and saying, "I am not happy with this response, the medical world changes everyday, there has to be other choices."

    Upon arriving home, I started searching high and low on the internet for possible alternatives for this disease. I came across Lynxcare.net and wondered about what they had to offer. I called and talked with Sharon who I spilled my guts to with our ordeal. She generously gave me guidance to a second opinion doctor and advice on what they offer at Lynxcare. I called my husband who in turn called Sharon and talked with her at length about her business. We hired Lynxcare, and asked for a medical researcher and an alternative medicine doctor to research our sons condition and report back to us any like cases, how they are treated, who treated them and the outcome.

    With Lynxcare's referral, we went to see a second doctor for a second opinion. He told us that he belonged to a group called, "Limb Care Institute", a group of doctors with expertise in bones and that this is a case he would like to present to a group that meets every Thursday morning...this is 30+ doctors that discuss cases from all over the country...so instead of just two opinions, we were getting 32!! We were thrilled!! (Thanks Lynxcare!). The day following the meeting, we got a phone call. The head of the limb preservation institute would like to take our sons case. He told us the procedure would be an outpatient surgery, back to normal lifestyle in 6 weeks. We met with the surgeon and he told us that he would do a "fluoroscopy" surgery, with a one inch incision, his tumor would be cleared out, packed with calcium sulfite and human protein growth.

    The surgery was done on August 13th...surgery went well. He was in surgery for about 50 minutes. They used the calcium sulfite and the protein growth. We attended a follow-up check-up on Tuesday, September 7th, 3 weeks following surgery. He was off crutches at that time and walking on his own. His OWN bone had grown back to nearly 90%. (See attached photos of x-ray).He said that he was healing ahead of schedule and it was looking really good. As of today, he is skating on his rollerblades, although not back to full strength, per doctors orders and he is running lightly on his leg. We have a 6 week follow-up on Monday September 20th, to hopefully release him to 100% activity. Now, it is true that they told us that this case would definetly be different had Tyler broken his hip (his was in the same area as your sons but our son's was the left leg). I would suggest you call the Colorado Limb Consultants to discuss your son's case, they have an 800 number...you could type in on google, "Colorado Limb Consultants", Dr. Wilkins for some possible answers.

    I hope that your son heals quickly and pray that he returns to a normal happy boy. Good luck and best wishes.

     
    Old 09-16-2004, 01:58 PM   #10
    debbsd
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    Re: bone cyst ubc

    well i been to see the dotor today with are declan and we have to wait 3 more months to see if the bone will fill up any more i bit disopointed today because we been waiting for so long its been 10 months now and then we got 3 more months after that then god no s how long after that he stil cant run jump or any of that stuff kids love to do doctor says his bone not strong enough he not been in school for 10 months because of health and save ty the school has just let him go back but now they no it going to be longer there kicking there heels in and giving me the health and save ty act again the doctor signed papers for home schooling but there just big long list that dec will be better by time he gets to top of it i no he will catch up on his schooling but he misses his mates and he is going in to his self he is now this quite little boy and i dont no what to do i want me little loud boy back .
    is there any think else i can do to help him heal his self i giving him milk for his bones just want to no if the doctors have told any of you if there is any think u can do to help this its so hard being parents u just wish u could take it all away and i do think kids handle it better then us thanks for listen .
    debbs

     
    Old 09-17-2004, 06:03 PM   #11
    jonsmom
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    Re: bone cyst ubc

    i know how you feel. my son had surgery almost 14 months ago and he still cannot go to gym at school. We own 5 motorcylces and he is not allowed to ride on the back with his dad. I think because of your sons age they are trying to let him heal on his own. You have to be patient. After we waited for 9 months and my son was still not getting better they had him try a machine called the exogen 2000 made by smith and nephew. we use this machine which is about 6inches x 6 inches for 20 minutes a day. it is to promote bone growth. it has a pulse like having a sonogram. it does not hurt at all and the doctors said after the first 6 weeks it was working. we have been using for 4 months now. this helped us not have to do more surgery. we do not go to doctor until october. Have you considered a childerns hospital or at least a 2nd opinon?

    Let me know how it is going. i realize that you are not in the US like we are and some of your options are probably different

    jons mom

     
    Old 09-17-2004, 06:58 PM   #12
    jonsmom
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    Re: bone cyst ubc

    i am thrilled that you child is doing so well. Rollerblades? dont i wish
    i am assuming that you live near colorado or did they consult and then have someone near you do the surgery? i wish that we would have had the time to get a second or even third opinion. when they are sending your child to the childrens hospital by abulance and telling you at 2 different hospitals that you have no options and they are hopeful that with what they have they can put it back together i think your brain shuts down. i got 2 hours sleep in 48 hours. finally had to tell my husband to deal with it because i had nothing left. of course 45 minutes after i left the surgeon came in. My best advice to anyone going thru things like this is have someone like a family member stay with you and take notes also write your questions down so you can ask them when you see a dr. We now write down questions in between visits so we can ask them of course my son just keeps asking questions about what he can and cannot do ( he finds it a challenge) and she always takes the time to answer all the questions. My son is doing great! can he rollerblade no
    he can 1 year later ride a bike and he can play sports in the neighborhood that are not contact or collision. will he ever again i doubt it. he has Great friends that have helped better than any kids i could have ever dreamed of. how may 11 year olds do you know who would carry a book bag for 12 weeks or come to your house and help for 12 weeks. They were exhausted too but i never heard them complain! My son is walking on his leg even though it is with a slight limp. We live with one day at a time!!
    Good luck to you I hope every thing continues to go well. I know we have a minimum on 1 surgery left. I will look forward to hearing how it goes. You are an amazing story.
    jons mom

     
    Old 09-18-2004, 02:27 PM   #13
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    Re: bone cyst ubc

    hi thanks for your letter i read it today and yes we dont live in us we are in the uk i am thinking about asking for a 2nd doctor to look at him not sure were i start or how i do that i have never had to do it before and i think its a case of dont want to upset the doctor he under at the min but i feel declan is not getting the best care he needs at the min and i as his mother have the right to look out for my son and get him the best i can yes its differnt over here and i wish that we had the doctors over here who no about this but there is only a few and i have to find them because my doctor has said he has seen this before but not were dec has it he seen it in the arm and he didnt say if he has op on the condtion befor there is a lot of answers we are still waiting for of him and all we get is he doesnt no and when it all starts happening like you said your on your way to hospital your sons hip is broken and theres a black mass around his hip then you get told its in his hip your head just shuts down and you look to the doctors to help and think they no what there doing and its going to fast to go in yes i no what you are saying you forget what you were going to ask the doctor and i to have started to right down what i want answers to i am going to get a 2nd doctor to look at my son i will let you no how it goes thanks for taking the time to hear me i just wish i could give you hope like you do me all i no is that are kids are strong and i hope from my heart your son gets better soon and i will send a thought out for him thanks debbs

     
    Old 09-28-2004, 05:54 AM   #14
    ajhanson
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    Re: bone cyst ubc

    I just wanted to tell you that before your next surgery it would be worth it to get on the internet and type in "alloy matrix" or "allo matrix" and read about that....that is the procedure that was done with our son and many others....with great success. It would also be worth contacting someone via email at the Limb Preservation Institute and ask for a doctor in your area or who will fly to your area to do this surgery... search for the Presbyterian St. Lukes Hospital on the website and the Limb Preservation Institute is on that site, hopefully they can fix your son's leg or advise your doctor how to. Get out there and fight for your child, don't worry about 2nd opinions hurting feelings, we've learned our lesson.

    Good Luck!

     
    Old 11-24-2004, 12:21 PM   #15
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    Re: bone cyst ubc

    Hello everyone. Just thought with the holidays approaching us I would send an update. My son is doing great! After 15 months he can finally go to Gym at School He is thrilled. The Dr. says the Exogen Machine has worked wonders and now they may not do a 2nd surgery. This does mean that the rod plate and screws will stay in for life, but she is not seeing a reason to remove them at this point. we will probably do a small procedure to stunt his growth on the opposite hip but we are taking it a step at a time. I hope all of your children are doing great at this time. Happy Thanksgiving!!!
    jonsmom

     
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