anyone with osteoid osteoma

I am a College student at Columbia College in Chicago. I have had osteoid osteoma in the past between August 05' and June of 06'. I didn't know I had it until the pain became so unbearable that I had to go to the doctor. The asprin that I had used for nine months just wore off. Doctors found the tumor at the University of Chicago and removed it. It was a success and now I am pain free. The memories of pain at night or on the train have not been forgotten, but its a relief nonetheless.

My question is, is anyone kind enough to share their experiences with me? I am doing a report on the disease I once had, and any comments would be great. Plus I can help out anybody who is going through it now, so feel free to ask any comments or questions regarding anything.

[centinall]

Hi,

I've had an osteoid osteoma for about 15 years now. Back when I first started having the pain when I was ~15 the doctor diagnosised it as growing pains. About 5 years later, not being able to bare the pain any longer and figuring that I've probably finished growing I went and got a second opinion. This second doctor knew what it was right away. I went and got a xray, chem and ct scan and the nidus showed up perfectly in my femur about 1/3 of the way up from my knee.

However, by this time, there had been so much bone growth around the nidus that it wouldn't be easy for a surgeon to determine where exactly to start drilling for the nidus. This might mean that so much bone might be removed that I would need to have my femur reinforced with a steel rod that would have to be put down the center of my femur. Although the pain that I experience is beyond excruciating, I would rather just experience the pain every once in a while rather than not being able to walk for serveral months or properly ever again.

If the osteoid osteoma had been diagnosised correctly in the begin, I'm sure that the surgery would have been quit easy to perform, much like yours.

The pain that I experience is usually controllable with aspirin. It usually takes about 15 mins to kick in. However, there are often times where the pain is too great for aspirin to take care of. When this happens there is nothing I can do but hope that the pain passes as soon as possible.

Hope that this helps anyone with an osteoid osteoma. If anyone else has some input please post.

Things I have noticed about the osteoid osteoma.

- Dull pain throughout the area where the nidus exists.
- Pain starts around 1am-4am and usually goes by 8am-9am.
- Aspirin usually takes care of pain within 15mins.
- A heat pad of some sort soothes the pain somewhat.
- Caffeinated drinks, spicy food, cold weather, stress seem to bring on the pain.

also just found this yahoo group: http://health.groups.yahoo.com/group/osteoma/

This is new to me having only recently been diagnosed. A first I thought it was a muscle pull or bone bruise on my thigh. It feels like an ache and my groin is sore. I have a follow up MRI to keep an "eye" on its size. I'm confused as to why certain days are better then others regarding pain? I can get by without a limp when the pain is tolerable.
Has anyone had the difficulty in climbing steps. this has been tough for me. it feel like I have no kick off power??

[centinall]

This is new to me having only recently been diagnosed. A first I thought it was a muscle pull or bone bruise on my thigh. It feels like an ache and my groin is sore. I have a follow up MRI to keep an "eye" on its size. I'm confused as to why certain days are better then others regarding pain? I can get by without a limp when the pain is tolerable.
Has anyone had the difficulty in climbing steps. this has been tough for me. it feel like I have no kick off power??

To be honest, it doesn't really sound much like my osteoid osteoma at all. Are you sure that they've diagnosed it correctly? What you describe actually sounds a lot like something my friend has. His doctors first diagnosed his condition as an osteoid osteoma in or around his hip. He had surgery to remove it but pathology turned up nothing. Later, he had pain again and the doctors then diagnosed that he had Sciatica. Perhaps that's what you have? Sounds a little more like the symptoms, but then again I'm no doctor.

Anyway, let's assume it is an osteoid osteoma. When do you get the pains? How often? Where abouts would you say the pain is coming from? What did the doctors do to diagnose it(CT,xray,etc...)? Do you keep track of what you eat or drink around the time you experience the pain?

When I get the pain it actually feels good to push off and put pressure on it. I'll actually go running at 3am just to apply some pressure on it. But when I'm doing this, it feels very tender as if it's going to give way. Sometimes my leg is already shaking probably because the pain is so great.

Hope this helped a little. Keep us updated.

http://en.wikipedia.org/wiki/Sciatica

Hi, Im 20 years old, female. I was diagnosed with Osteoma osteoid after many wrong diagnoses (including sarcoma). I have such tumor that changes its image every time I do a new ct scan. The last time I had my surgery to remove it, my doctor biopsied and found out the confirmation of the osteoma osteoid. I had 3 biopsies, cos all the time he diagnosed like osteoma osteoid, he found a new image of tumor (it wasnt suppose to change). I had my last surgery on march 23rd, and now I'm still recovering from the surgery. I'm not able to walk due the "tunel" in my bone, so I have to walk with the help of crutches. I started having pain about 3 years ago, but didn't take notice until the pain was unbearable (2 years ago). It starts in the night and goes to the morning. It is decreased with aspirins...well, you all know the symptoms. I came to the site cos Im in despair. Even after the surgery I still have pain, and it follows the same symptoms. The tumor was is im my right tibia, but now the pain is in my right knee. As unbearable as it was in my tibia (the pain in the tibia itself decreased after surgery). My doc says it may be caused due to my recovering... Also because i've been through 3 biopsies and I'm walking with crutches for already 4 months. I couldnt put charge in my bone, so since my first biopsy I dont even put my foot on the floor. I sometimes feel extreme weakness when I try to put the foot on the floor, and i'm always so afraid to brake it that I have just avoided doing it (even knowing it is good for helping the recovering of the bone).So my knee became very lazy. Why do I have pain in my knee now?Can it be a new tumor? What will be of me? will I take aspirins for the rest of my life? Will I ever be able to do sports again? Im very tired of evthg. The health system in my country (brazil) is very poor, and so it took me way too long to diagnose it, have the surgery and the treatment. I'm experiencing it for 2 years already, and it's a nightmare.If you can help me, please, I BEG YOU, forward answers to my email gaby.cst@gmail.com
I need help!
Gabriela

I had osteoid osteoma for 2 years before i had a surgery in 2003. I Tried everything but the pain was unbearable. then i went to hospital and my doctor suggested surgery..i am blessed it was successfully done and today m perfectly fine.

it started with a dull pain and i thought it is normal..but as days went it became very severe.
The pain would be very severe in night from 1-5am and i had to take a asprin and then sleep
but after surgery i was very weak and developed TB and later had too many problems

[precious2000]

Well in a way yesterday was one of the best days of my life. After a dozen doctors and misdiagnosis i finally got diagnosed with this. I have had this for exactly two years. One doctor said that it was all in my head and all of the other doctors were just blurs. I am so happy that this will all end next month when i get the surgery. I actually have it in my spine. Which back pain is just impossible to live through and i've lived with it for two years. My pain is actually on and off it will hurt nonstop for about 4 days straight then go away for another 4 days. Does anyone else get the on and off pain? Advil just doesn't help anymore. Unforteuntely i've had a dozen MRI's and this did not show up on any of them and luckily for me the doctor i saw had suggested a CAT scan. This could have been taken care of two years ago with a simple 10 minute test. Just amazes me. Well good luck with everything!

I was diagnosed with an osteoid osteoma on my femur in November, with pain starting in January. I went to doctor after doctor and had treatment after treatment, test after test. Finally, just before Christmas I had it surgically removed. I saw the chiropractor, and they thought it was one thing. I went to a D.O. in pain management, and he thought it was a compressed nerve in my lower back. He prescribed muscle relaxers and a few other drugs I don't even know what they were supposed to do. He gave me an epidural steroid injection, and it did nothing. I was taking 2 Advil every 3-4 hours around the clock. The pain would wake me up at night (because I wasn't awake to take my Advil). I would have to get up and walk around at 2 in the morning for 20 minutes for the Advil to kick in. I was sent to physical therapy (without them knowing what was wrong yet) and basically had my tumor scraped on - they thought it was scar tissue! I had an ultrasound on my leg to make sure I didn't have a blood clot. I had 2 CT scans, numerous x-rays, an MRI, and finally, the diagnosing bone scan in November. The pain was so intense that I would limp and at times it brought me to tears. Who would have thought I could be so happy to be diagnosed with a tumor and to finally know what was wrong with me and that it wasn't all in my head! A biopsy after my surgery confimed the osteoid osteoma diagnosis. Since the surgery, I haven't had pain like before, but I don't think my leg is quite right now. If I cross my legs, my bone feels "weak" (that is the only way I know to describe it) but after I uncross them it goes away. So I am wondering what that is all about. Hope this helps.

[BoRu]

My problem started one night when I was 6! I started hurting really
bad one night (b/t 1am and 5am) and started crying so in comes my
Mom and Dad! Mom ran a tub full of hot water and undressed me
putting me in the hot water! It sure felt a lot better being in the hot
water and Mom taking the soap and rubbing my right leg for about 3
hours! The next night it was the same thing so Mom took me to our
family doc the next morning! He had Mom rubbing Aspirin Cream on
my leg all the time! After several trips to the docs office
then to the ER one night (I couldn't walk on my right leg at all) he
put me into the hospital and said I had a septic knee joint! I
remained there for a week and even went home on 100mg of
Thorazine and Tylenol #3! This didn't seem to lessen the pain at
all just doped me up! I was always running a low grade fever so
Mom would take me to school nurde and she would send me home!
This went on for a year til one morning as I was getting ready
for school and noticed a large knot on my right tibia right under
my knee! I showed Mom and since she had wanted our family doc
to refer me to an ortheopedic surgeon (from the get go since a
referral`meant our insurance would then pay) but family doc thought
she would be losing money sending me!

This ortheopedic surgeon took x-rays right from the get go and then
told Mom that there was a tumor in my tibia that had rupured the
bone! I was scheduled for surgery the next morning! This doc told
Mom he had removed the tumor and did a bone graft to repair my
tibia! BUT...while he was in there looking around he found another
tumor in the tissues right beside this big one and he removed it also!
Mom and Dad would have to wait a week for the bone to go to
Austin, Texas to be decalisified to see if it was magliant! Thank
God...it wasn't! I had a cast all the way up to my body! I lay
there after surgery hurting badly but was afraid if I told them
I was in pain they would take me back to surgery! I started
yelling at Mom if she even touched the bed! This was so unlike
me til Mom called the doc back in! He told me if I had of told
them I was hurting he could have given me a liquid med but
now I had to get a shot!After that shot wore off I was crawling
all over the place! My pain was gone for the first time in over
a year! I will never forget the pain I went thru as it is as clear
as if it happened yesterday and I am now 37!

This ortheopedic surgeon was killed in an auto accident about 2
years after my surgery so now I am guessing what he told me
the tumors were called! I know my worst pain was always b/t
1am and 5am! I was told by this doc that the tumors were
caused by brusies and anytime I got a bruise it had to be
treated as an open wound! Of course, the family doc I
used back then along with the orthopedic surgeon dying
and the hospital that I had the surgery at are all gone now!
I don't know anyway to get the info from these places and
my family doc now doesn't believe that I was told that these
tumors were caused by bruises! I checked with Mom and she
said this was what the ortheo said!

Does this sound like the osteiod osteomas that have been
identified in this site?? It sure does to me! After all
these years passing it is hard to remember the name of
them but I haven't read where other tumors only hurt
during the nighttime!

I wish everyone well and hope that yall will find the relief
that I found! Like I said b/f...this is a pain that you'll
never forget! My prayers are with each and everyone
of you!
Mary

Hi there. I was just wondering if you could help me... I have not yet been diagnosed with Osteoid Osteoma as i have not yet visited my doctor but i am sure i have all the symptoms...
I continuously have a dull pain in my right calf duing the day (NEVER GOES AWAY) that seems to worsen when i walk for a long time. At night is when the pain sharpens between 1am- 5am- i wake up every night from unbearable pain to take an ibuprofen that seems to numb the pain a bit.
The problem has been there for at least 9 months now and has gradually got worse, it sometimes causes me to limp and I cannot kick my leg high anymore.
I have no bruises or swelling on my leg and I am pretty sure that it is not my muscle that is causing the pain.

Were these the symtoms you had??

Thanx
Sara