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Deesknee
01-22-2007, 11:34 PM
Anyone have a child with this. My DD3 was just diagnosed today. I've gone online and it does say it is usually benign. I just was hoping to hear a little more about it. Her pediatrician had an appointment booked for us at Children's Hosp. before she even called us with the results of the xray. I just would like to know what to expect on our appt. at Childrens on Thursday.
Thanks to anyone who can help.

Mackey Mouse
01-23-2007, 05:35 AM
I have not heard of it, but think Children's is an incredible hospital and you are going in the right direction to get your answers.....

I just did a quick read on this.. phew...it seems that they are most often benign....that is a great word to hear, benign..

Please do let us know how you are all doing and most importantly how your 3 year old is doing..

I do not know their procedures, but I would think you would have a sit down with the doctor reviewing any tests that you may have.. They might want to do their own tests, ct scan, mri, and may schedule that for another date....and then take it from there.

Try not to worry, I know it is so hard, just go with great positive attitude and get some answers. I usually write down my questions, just in case, in the moment of it all, I might forget. Find out the doctor's policy on reaching him or her....that is key in case you need to get in touch with these Boston doctors, it can be difficult. Try to make friends with his secretary....this is a hard one to do, because they can difficult sometimes trying to protect their doctor all the time, they forget about the patient...but you do get more with honey.

Most of all, hugs and prayers going your way, and keep it positive....from what I read, it should be ok. :)

TruBlu
01-23-2007, 09:18 AM
First of all, try not to worry! That being said, I know you will anyway because I did! DS7 had a bone tumor the summer before he started kindergarten. I found it when I was giving him a hug and my heart sank! It was on the end of his clavicle (sp???). I found in on a Friday night, so that was a really hard weekend of praying and waiting for the doc's office to open on Monday. His doc couldn't really feel it, but said that he trusts me enough to do an x-ray. When the radiologist called us back to talk I knew that I had been right. DS5 (at the time) thought it was really cool to see the picture of the skeleton and was really shocked to find out it was his! Anyway the radiologist said "These are almost always benign unless they start to grow. Then they are malignant." :confused:

Anyway, the ped. high fived me for finding it, and we were told to just watch it. Well it immediately started to GROW! Within 2 weeks it had doubled in size. They referred us to UNC Children's Hospital to an oncologist. I was a mess waiting for that appointment! He checked out DS and said that the radiologist should have never said that! He was sure it would be benign. DS had the surgery to remove it with no problems at all! He did so well that they released him from the hospital early. He never even needed the pain medication. We had x-rays every 6 months for 2 years to check for re-occurance. This past summer was our last visit!!!! He is doing great. He just has a small scar on his shoulder, but he has great surgery stories to tell his friends!!!:goodvibes

Please try not to worry!

Deesknee
01-23-2007, 02:47 PM
Thanks TruBlu & Mackey, I am trying not to worry. I think I would feel better if I knew if something was going to be done Thursday. I don't want to go in to Boston just to talk to a doctor that is just going to tell us just what we read online. I want her to say (well obviously there has been a mistake your daughter has nothing wrong :) ),but realistically something like " this is what we are going to do, this is why, and we are going to do it right now. "Is that unrealistic?

Deesknee
01-26-2007, 08:10 AM
Hi everyone,

I just wanted update with DD3's situation. We took her to Childrens yesterday to meet with the Pediatric Orthopedic Surgeon. This was our first (thank God) experience with Children's Hospital. We could not believe how wonderful an experience it was. The atmosphere and people were just amazing. We got to the Ortho dept about 3o mins early. They called us before we even sat to fill out the medical history. The doctor was wonderful as was the nurse. They talked to us, then left the room to look at DD's xrays we had taken on the So. Shore. When the doctor returned to the room, she informed us she was not "convinced" it is Osteoid Osteoma listing 3 reasons for her questioning it. 1. DD is younger than most that are affected by this.
2. mostly affects boys, 3. usually shows signs on other areas of the bone. She sent us for a CT scan. DD did very well. She was frightened at first, but the technician let her see me on the scan table first and did a "practice" run with me. They also gave us plenty of time to spend with her getting comfortable on the table and calming her down. She wasn't screaming or crying, just saying she didn't want to. She touched the table, then sat on the table, then finally laid down, then when she was pretty calm the tech let her do a "practice" run. She seemed pretty good by this point and he strapped her in then left the room. All went well. DH was on one side of her holding her hand and I on the other, not to mention she got to hold her Teddy. All went very well considering we were dealing with a 3 year old who has only had 1 xray (last Monday) in her whole life and was petrified at that! We are so proud of her. As far as results go, the doctor is going to call us. The other considerations of what it could be range. She mentioned a stress fracture, but really does not think that is it as DD is way to young. She also mentioned perhaps something is irritating one of the blood vessels going into the bone. And of course there is still the consideration of Osteoid Osteoma. Strangley enough, I almost wish it were that. Atleast I know that is benign and the procedure is simple enough. Not know only gives room for nervous speculation. I know I should not project, and I will try very hard not to. For now, we are not giving her Motrin until the pain begins, in order to try to pin point what she is doing when she gets the pain. Last night she did not complain of pain at all. Today she is very cranky, but hasn't complained of her leg. I guess we'll see. Thanks for everyones prayers.
Dee

TruBlu
01-26-2007, 09:04 AM
I'm so glad the doc's visit went well! She sounds like a very brave little girl. I know you are very proud of her!!!

Our kids love going to the hospital for tests - because we bribe them! If they have a procedure, they get to pick out a prize. DS5 was actually asking when he would have another surgery just the other day.:rotfl:

Mackey Mouse
01-26-2007, 01:27 PM
I know.. Children's Hospital in Boston is great imo. Our middle daughter was followed there for seizures, this is going back some years...but they were wonderful. Getting blood from her veins even now is not easy, they move around and people panic and start pumping the needle in and out, but at Children's, they always got it on the first try. She grew out of whatever it was that was causing the seizure activity, but my remembrance of Children's Hospital is a fond one..

I am so happy they were so good to your little one and if anyone can find out what is going on, it will be them.. You are in good hands.. all of you are.. :) Please do continue to let us know how she is doing and if you get any results, please let us know that as well.. Keeping her in my thoughts and prayers..

Deesknee
01-29-2007, 11:15 AM
Just an update.

DD has had no major pain in her leg. I have noticed she is favoring it a bit.
We still have not gotten the CT results back.

Dee

Mackey Mouse
01-29-2007, 03:10 PM
Hugs to you, and keep the faith. Hopefully the CT scan will show that it is benign and they will proceed accordingly.

Try not to worry.. :)

Deesknee
01-30-2007, 02:09 PM
Great news!!! My sweetie has not got Osteoid Osteoma! The CT scan showed no tumors. The abnormality was a vein going into the bone. I asked was that normal. She said it is not unusual. When they did the CT they did both legs and found my DD has matching ones on each leg. The doc said "hopefully" the pain was just "growing" pains and she wouldn't experience that often. I know from my DS(15) that growing pains are really painful. When I described the pain to DD's doctor that is how I described it. I said with all four kids the only time I remember this type of screaming with pain is when they though DS might have juvenile arthritis - which was growing pains. Thank God.
Thanks to anyone who mentioned us in prayers.
And my prayers to all who are still torn with emotional and physical pain.

Dee

Mackey Mouse
01-30-2007, 06:30 PM
I am so glad to hear that.. what a relief for you all.. Hugs to your little sweetie....

Deesknee
02-01-2007, 01:35 AM
Thank you Marsha. I hope you and your DH have a nice trip. May the powers larger than us smile on you both. Thank you so so very much for all your support with what you and your DH are going thru....you are within your own right an angel. Thanks.

Dee

Colum_Journalist
02-13-2007, 08:53 PM
Hello everyone. i am a college student looking for some imput from people who have had this disease. ironically, i also had osteoid osteoma back in August of 2005. Although it wasn't aware of it until May of 2006, my doctors at the University of Chicago took care of it very well.

What I know of is this: This bone tumor is benign, but very painful. I had it for nine months, and it hurt the most at night. I couldn't sleep and when asprin stopped working as well as it did in the preliminary stages of the disease, I had to go to an alternative source; surgery.

I had the tumor is my left femur bone in the thigh, and it was very unpleasant. when the pain came, i lost my mind. it hurt so bad at certain points, i had to stop what i was doing, and just wait until asprin kicked in.

I am 100% healed of this, and it doesnt bother me.

I ask any of you to help me out with some feedback about their situation. My report is just a study on the disease.

Thank You