Discussions By Condition: Bone conditions

anyone with osteoid osteoma

Posted In: Bone conditions 90 Replies
  • Posted By: Anonymous
  • February 14, 2007
  • 03:16 AM

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.

Reply Flag this Discussion

90 Replies:

  • 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/
    centinall 2 Replies Flag this Response
  • 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??
    Anonymous 42789 Replies Flag this Response
  • 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
    centinall 2 Replies Flag this Response
  • 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.comI need help!Gabriela
    Anonymous 42789 Replies Flag this Response
  • 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 sleepbut after surgery i was very weak and developed TB and later had too many problems
    Anonymous 42789 Replies Flag this Response
  • 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!
    precious2000 1 Replies Flag this Response
  • 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.
    Anonymous 42789 Replies Flag this Response
  • My problem started one night when I was 6! I started hurting reallybad one night (b/t 1am and 5am) and started crying so in comes myMom 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 hotwater and Mom taking the soap and rubbing my right leg for about 3hours! The next night it was the same thing so Mom took me to ourfamily doc the next morning! He had Mom rubbing Aspirin Cream on my leg all the time! After several trips to the docs officethen to the ER one night (I couldn't walk on my right leg at all) heput 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 atall just doped me up! I was always running a low grade fever soMom 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 areferral`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
    Anonymous 42789 Replies Flag this Response
  • 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
    Anonymous 42789 Replies Flag this Response
  • Sara, it sure sounds like you need to get to your doctor and not wait about it! I remember the pain I had with mine and it was so unbearable that I thought I was going to lose my mind! Noone believed me (it seemed) but my Mom and Dad and they were the ones that were having to get up with me rubbing my leg continiously even when I was in the hot water! Ibuprofen wouldn't have touched the pain, but then again it ruptured my bone! I believe that my Mom and Dad and I were so glad to finally put a name to this tumor and for the doctor to acknowledge that it wasn't my just "faking it"! You do need to see your doctor ASAP and if you have to be referred to an orthopedic surgeon tell your doctor to do so and if you don't have to be referred just go see one! It sounds like yours could be several different things wrong with your leg that the doctor could help you put an end to all this pain! Don't wait any longer, just go ahead nd go to your doctor! It is dangerous waiting around for yourself to get better! It has been long enough and your not getting better! My T&Ps are with you and, please, keep us informed on your progress!
    Anonymous 42789 Replies Flag this Response
  • Dear ALL,I have had osteoid osteoma in my ancle for seven years i am 26, i had an opperation 1 year ago, and apparently the tuma has vanished from the radio obligation treatment i had, as a result i have an united fracture in my ancle.. i believe the tuma still to be present as i still have all the symtons, I still have no balance on my right ancle, and still have pain constantly, I have and am in search of someone who knows exactly about this condition, as know body really has a clue, it seems every case is different.I am willing to travel the world to find a doctor who knows what he is talking about and can fix me...is there anyone out there, still having probems after suregery?Any info much apriciated..Oliver in London please mail me on flightbh2@hotmail.co.uk
    Anonymous 42789 Replies Flag this Response
  • Complications of Crohn’s Disease

    Recognize the risks associated with Crohn’s disease.

    8 Surprising Facts About Cholesterol

    Did you know that one in six US adults has high cholesterol?

  • Questions for you guys:I've been going through a ton of tests to see what is wrong with my calf/shin on my left leg. Originally, it was considered fragmentary sciatica due to the fact that I have some bulging discs. However, a few tests and medications proved that not to be the right thing... tested for a blood clot... had an angiogram (NOT fun)... nothing... Over the course of this time, I noticed that a divot would occasionally form in the middle of the front of my shin. It would pop up every now and then. Also, a small bump formed on top of the shin, right above the divot, but under the skin. The bump is constantly there and occasionally changes shape... sometimes it is flat, sometimes its large, etc... all docs have said that the divot is nothing to worry about and the bump is simply a fat deposit.Anyway, the Pain Management doc sent me to physical therapy... no help... vicodin didn't do anything... gave me a few cortisone shots... helped the back, but not the leg... then he brought up the possibility of osteoid osteoma... he had me try aspiring, but it had no effect... he had me try tramadol (ultram) which helped for a few days then stopped working... he gave me some lidocaine patches and gave up, referring me to some orthopedic surgeons which my appointment for is coming up next weekI'm at my wits end... I've been to waaaay too many doctors about this... do any of my symptoms fill in with osteoid osteoma?Problems:Pain in shin and calf, though mostly shin.Pain is constant / leg feels exhausted after climbing stairs or otherwise exerting itself, but occasionally throbs at random intervalsBump on leg. Bump causes no painPortion of shinbone is painful when any significant pressure is put on it. This is directly to the right of the bump.Aspirin did *not* helpArgh! Help!
    Anonymous 42789 Replies Flag this Response
  • I submitted a post a while bk about my problem unfortunately nothing yet hasbeen done But for the time being I have been given co codamol (also known as SOLPADOL)tablets. 4 anyone who suffers from the pain of ostoid osteoma i strongly recommend you ask your doctors 4 this medicine IT WORKS! ive been taking ibuprofen and paracetamol 4 months but they have not worked, co codamol does!!! it is used 4 severe pain and u can take up 2 8 a day. If you take them continuously throught the day it is sure to lessen the pain!!I hope this information helps as i understand the pain u go through, it has helped me gr8ly, i can walk and sleep fine although the problem still exists, the pain can be managed.SaraO and by the way usual sypmptoms 4 ostoid osteoma is a dull continuous pain in the leg that worsens with activity and night normally frm 1am 2-5 am( real sharp bad pains) the pain igets better with asprins, paracetamol or any other anti inflammitory tablets.There may be a lot of inflammation around the tumor and the soft tissue around the tumor may be painful or swollen. Sometimes even a lump may be felt. hope this helped :)
    Anonymous 42789 Replies Flag this Response
  • I had my surgery 21 years ago and have not had the pain or tumors come back! I was told to always treat every bruise like a open wound! I have done this! The doc I used (orthopedic surgeon) that knew exactly what was wrong and did my surgery a few hours after I first seen him died in a car wreck a couple of months after he did my surgery! What a great loss this was to the medical field! He was so caring and he was always there when you needed him! He was truly such a caring doc that cared so much about his patients! I still miss him to this day!I hope each of you find a doc that will get you cured! This is so painful to have! I was taking Tylenol #3 and 100 mgs of Thorazine every 4 hours and it wasn't helping the pain! I was going nuts b/c of the pain plus my parents were going crazy seeing me in so much pain! Don't give up...keep going to other docs til you find one that can help you!T&Ps to all of you!Bo
    Anonymous 42789 Replies
    • August 14, 2007
    • 09:57 AM
    • 0
    Flag this Response
  • Well my story is that i went to the doctor because i had pain in my leg about 2 and a half years ago. And well he told me it was a basketball injury that can't be helped, i think he said it was a bursa. His diagnosis was givin with out any x ray or anything, i was stupid and beleived him. After another year of pain at night i wen to the doctor again. She said it was a upper quad pull, which i was happy with because i know i could physically train that, but then i went to another doctor, and once again i was told it was a bursa. She wasn't sure so we took x rays. The x ray doctor said i had a form of osteo porosis. AT 23 and being a male i feel that was highly unpossible. After this last doctor i went to and an MRI, after he took a glimpse at the image he said, its definantly an osteoid esteoma. He also said that since my tumor is in such a spot (on my femur close to my hip) that it can not be surgicaly removed with out possibly breaking my hip and needing hip replacement. Again i am 23 so i don't want a new hip. So i am sitting here with an intense presure and pain in my leg. The only thing i know that helps my leg is to run. It hurts like anything you could ever feel, but it relieves the pain almost all day. remember to take your advil before you run though, it helps with the pain. If anyone knows of any stretches to help me stretch my groin so i may return to my original flexiblity before this tumor. The only thing i have came up with is intense butterflies, which hurts almost to the point of tears, but anyways. i hope i get so feed back, email me at kak584@yahoo.com
    Anonymous 42789 Replies
    • September 23, 2007
    • 03:30 PM
    • 0
    Flag this Response
  • My son is 15 and will play JV basketball his 1st year in HS. This shows his deication to the game. Anyway by this you can tell how how much work he has put in to get to this point. He started to have pain up and down the left shin since about June 07. We would ice it and that helped. then a knot appeared on the lower tibia. That is when we got it checked. The er dr said it was a stress fracture but the specialist we just saw thinks it is an osteoma. He isn't 100% but said we have to start somewhere. But the pain only happens when he plays on it and then it stops when he has rested. It hasn't happened at night that I know of. The knot is about 1cm and is going away now since he has been off it for 2 weeks. I hope this is what it is. All that I have read says it is. Anyway if you would like more info for your report or have anything you can tell me more about the osteoma you can contact me at ptsadad@lycos.com. Thank you
    Anonymous 42789 Replies
    • October 11, 2007
    • 05:15 PM
    • 0
    Flag this Response
  • Hi, I just turned 36 yrs old (female) as I laid in the hospital Oct. 1st. I was having a problem with my sciatic nerve causing major leg pain for almost 2 months, It got to the point where I couldn't even get out of bed. I called my doc and said he had to do something immediately before I lose my job. He sent me for an MRI, they found a disc problem that needed surgery immediately. My sciatic nerve was laying over the disc causing my pain. They also found tumors wrapped around my spine and clinging onto my lung - diagnosis is Osteochondrome. My Surgeon (just 2 1/2 weeks ago from today) did surgery, fixed my disc and biopsied my tumors> Benign Thank God. Now i'm home healing but I still have a million questions, like... will they grow? will I be ok? am I healing well? when will my life be back to normal? I'm so scared and getting a little depressed while I sit home re cooping. All my friends, Docs and family say i'm healing well but I would love to talk to someone who has been in a similar situation as me. Thank You anastasi2005@aol.comMichelle
    Anonymous 42789 Replies
    • October 15, 2007
    • 02:07 PM
    • 0
    Flag this Response
  • Hi everyone, just about to turn 23 years of age in a couple weeks and just about ready to have my second surgery on my femur bone, which I had a recurrence of an osteoid osteoma on my femur bone. I had my first osteoid osteoma removed Decemeber 20th 2006 and heading back to get my second one removed in the same area Jan 4th of 2008. I first noticed the pain about 3 years ago and it always felt like I had pain in my knee. I took 3 ibuprofen at first, but about after 6-8 hours it would wear off and I would have to take another 3 pills because of the pain. I tried joint pills, herbal pills... So for the past 3 years I have been taking 9-12 ibuprofen a day, which I know is not good for me, but what can I do? I carry it with me everywhere I go, Tylenol would only last about 2-3 hrs, Alieve lasted a little over 8hrs for me, but ibuprofen seemed to work the best. It came to the point I could not bare the pain anymore and went to a doctor. I will let you know I saw 5 doctors, did therapy, a couple cortisone shots, before I was diagnosed with having an osteoid osteoma. After the first osteoid osteoma removal the pain was still present. The doctor told me I could have that pain for a couple weeks and a possible of a couple months after the surgery and that would be normal. Unfortunately I went and got a CT scan 8 months after my surgery to see if there was anything there and of course there was another tumor. The first one I had was about the size of a Dime and now the one I have is about the size of a Silver Dollar. Has anyone experienced recurrences?? or had multiple osteoid osteomas before?? I hope this surgery will be it and I can live without relying on pills. If anyone has any information feel free to E-mail me at caskiej@findlay.edu
    Anonymous 42789 Replies
    • December 19, 2007
    • 05:25 AM
    • 0
    Flag this Response
  • im 13 now im from england i was diagnosed with osteoid osteoma july last year and ive had it for 5 years though i have been to my local doctor several times and they keep sending me back saying that it's only growth pain then i went one last time he knew straight away and sent me for an xray straight away they didnt find anything then i went for an mri scan then a ct scan. we went to the head doctor after a few weeks and he said they will operate whille a ct scan is on me and cut my leg open so they called me back and then said they wont do it because there is the most highest percentage that i wont be able to walk for the rest of my life so then they were going to a radiation treatment to get rid of it. but only if the specialist called andy wayne wright in oxford university approves me to go ahead and do this radiation treatment if he dont they will do open surgery so im still waiting for an appointment wish me luck
    shajee 2 Replies
    • January 11, 2008
    • 09:56 PM
    • 0
    Flag this Response
  • im 13 now im from england i was diagnosed with osteoid osteoma july last year and ive had it for 5 years though i have been to my local doctor several times and they keep sending me back saying that it's only growth pain then i went one last time he knew straight away and sent me for an xray straight away they didnt find anything then i went for an mri scan then a ct scan. we went to the head doctor after a few weeks and he said they will operate whille a ct scan is on me and cut my leg open so they called me back and then said they wont do it because there is the most highest percentage that i wont be able to walk for the rest of my life so then they were going to a radiation treatment to get rid of it. but only if the specialist called andy wayne wright in oxford university approves me to go ahead and do this radiation treatment if he dont they will do open surgery i have got an appointment for monday 21st of jan to go to oxford
    shajee 2 Replies
    • January 20, 2008
    • 02:38 PM
    • 0
    Flag this Response
Thanks! A moderator will review your post and it will be live within the next 24 hours.