No-one can comprehend the pain of these things, especially for athletes it is debilitating. Mine was on my scapula next to my rotator cuff. The constant pain of not being able to sit in a car or even sleep, now I think of all the things I took for granted, I finally had my surgery last summer and I am still recovering.
Thank you so much. I have watched this many times, and it has given me hope that the procedures will eventually eliminate my osteoid osteoma and all of the pain. It has taken me 7 years to get it figured out, after many visits to way too many doctors. Our experiences are so similar. I am so glad you posted this and I hope you are still pain free.
Thank you for your lovely comment, I'm glad that this film has brought you some hope and that you have finally been diagnosed after such a long amount of time. Your situation sounds very similar to Megans' and I can only hope that it gets better, that your pain goes away and there is a rise in awareness for this condition.
I suffered with this in my knee and had surgery 4/27/2021 and I am seeing my doctor again on 9/13/2021 to make sure it did not grow back again! The pain was so awful! The worst pain I have experienced in my entire life. I would cry from the moment I woke up until about noon. After I had the surgery, I felt immediate pain relief. The acute pain from the surgery felt like nothing at all compared to the horrific suffering I went though! I am a 46 year old female so it was very odd that this happened to me. I pray no one else ever has to suffer with this 🙏🏻🙏🏻🙏🏻 everyone thought it was in my head too! So glad the X-ray indeed showed something!
The worst pain is that the doctors says that there is nothing in my leg 🦵 this was for me the worst pain because I thought for months that the pain was just a problem in my head and I thought I would have these terrible pains for the rest of my life. but then luckily I decided to go to the doctor again and luckily they discovered that I had an osteoid osteom (I am being operated on June 26th)
I really relate to this story. I had osteoid osteoma in my second year of high school as well and i was training rhytmic gymnastics. My leg hurt a lot after moving and I just couldn't define the pain. It got to the point where I couldn't sleep at night anymore and I had to eat painkillers every night before going to sleep just to not wake up at night because of the pain. Only then did people around me believe me that something is actually wrong. After seeing this film I am extremely grateful that doctors managed to get the right diagnosis in four months even though at first they thought a had a fracture and had to go to physiotherapy that wasn't working just like Megan did. It was really scary especially because they told me I was going to need a surgery and that i was going to have it the next day. It went good, the pain ended and I learned to walk again and even started training the same year again and I still do which makes me really happy. Thank you for sharing your story!
i just came across your video, i r had osteod osteoma on my right ankle for 7 months and it always woke me up at night, today is my removal and i’m VERY VERY scared, wish me luck
I know the pain, after a year of seeing different doctors and several mr, xrays and act scan. I have just now been diagnosed with osteoid osteoma. Every time I complained about pain people would look at me like I’m crazy, I wake up every two hours or less, it’s gotten to the point where painkillers don’t work anymore. I have surgery done in about two weeks from now. I am so grateful that I found out where the pain is coming from. Soon I will have no more pain!
I’ve just come across your video. I found out I had osteoid osteoma when I was about 9, it was in my arm which was super rare for a girl. Took them over a year to find out what it was with a similar story to yours. I got told that I had broken my collar bone, arm everything but and also go told it’s me just saying it’s sore and their is nothing there. I was waking up every 2 hours taking paracetamol all through out the night. I couldn’t have surgery as I had main arterys and nerves covering the Tumour and was finally give some tablets that were pain relief and anti inflammatory . It eventually went away after about a year on the tablets. I’m 20 now and still get pain when it’s cold or if I use my arm to much. I’ve been back to the doctor and again been told it’s in my head and there’s nothing wrong. I did have a check up but it’s just scar tissue. Thanks for sharing your story, i know how frustrating it is!
Samantha_Nation thank you very much for sharing your story, although I'm sorry to hear you had to go through a similar situation as well. I hope you are doing okay now, I only hope more people become aware of this issue so these situations stop reoccurring.
DEAR FRIEND Films Yes I’m a lot better, hope you are to? nobody really knew or had even heard of it before, I went to so many doctors and had so many different X-rays and X-rays machines as I imagine you did also. Only really got found through an arm specialist as my regular GP didn’t know and said they learnt about it in Medical School but forgot about it as it was so rare.
Good film. I can totally relate. I had an Osteoid Osteoma in my elbow. It never showed up on many films for five years! The most excruciating pain ever. Finally showed up on my fourth MRI. By the way I had five different surgeries (mainly guesses) on my elbow. Finally I had it removed once they knew the problem. Never had an issue since.
My experience is so similar to yours it's crazy. I'm so sorry this happened I've been like this for just over a year you're so strong for doing seven. I'm hopefully getting my treatment soon mine is in my hip. This tumour is so poorly researched and for some reason stupidly hard to diagnose. Even thpugh it should be as simple as an mri or ct scan. Mine doesn't show on x rays. There are no charities for this as far as I can see and it breaks my heart. We need help and support it shouldn't be this difficult to diagnosis something so easily treated.
DEAR FRIEND Films Thank god, everything went well and they removed most of it this time, next week they’ll remove the remaining part but the pain is not as strong as before. Thanks for caring ❤️
I have osteiod osteoma in my neck n doctors told surgery is too risky ..some doctors said there is nothing n told to go for mental hospital ..but later I found rfa treatment on Internet n now in this week m going to doctor for it ...I lived your story...
Hey this type of tumor pain is so hard to localize where pain is coming from I had one that came back And had to get resection and I’m nail It was horrible
I'm sorry to hear that, I hope the film has done sufficient justice for the issue. Megan has had a full recovery, thank you for asking - we hope that you also have recovered well and are in good health. Thanks again!
Hi there! For Megan, after the first operation it was around 2 weeks until she could walk properly again, and after the second time it was almost a month before she could properly walk. For Megan, it also took longer to recover than what the doctors had previously thought. I hope this helps!
Same here, the pain is unmanageable!, got 9mm Osteoid Osteoma in my tibia, Recently discovered about Focused Ultrasound, seems to be the way to go, hope it will be gone soon, hope you are fine now :)
Hey, thanks God that i found ur video, i am adoctor from Egypt, i am nephrologist at Cairo, i have avery bad pain in my lt side of pelvis, i did ct scan The lesion is in avery critical place it is in iliac crest very close the joint I am planning to have ct scan soon to follow up its size then i will Go to interventional radiologist Do you have advice to me ? Thanks in advance
Hi there! Ah very sorry to hear about your pain, I hope the further scans give you results that can help and I'm glad you found our video. We are not medical professionals so we wouldn't be able to advise you on anything, but I will say don't give up on trying to find out what could be wrong. Megan's journey took 7 years and people didn't believe her for a long time but she eventually got the help she needed. So keep fighting and I hope everything goes positively for you!
Please, help. I've had osteoid osteoma on femur removed back in 2013 ; and now im feelin symptoms again, which is night leg pain. Is it possible it recurred? Im fucking pissed off...
Really sorry to hear that! I am in no way a specialist but in Megan's case shown in the film, her osteoid osteoma did come back a 2nd time and she had to have it removed again. That was a few years ago now and it has since been at bay as far as we know. Unfortunately, I do think it can come back after the first operation, although I believe the chances of it coming back after your 2nd time are lower than the 1st. I hope this helps and that you feel better soon!
@@dearfriendfilms Thanks for answering, piece of bone was removed and surgery was done twice in a year, second time because it wasnt removed properly if i remember well. Does this lower chances of recurring? Sorry for bothering you with this but i cant consult any doctor rn.
@@zarkoostojic9063 Sorry to hear that, that must have been very difficult. I do remember that the chances of reoccurrence can go down quite significantly after each time you have it removed, although I'm afraid I don't know the reoccurrence rate for each time it is removed, nor how often it can come back for some people. I really hope it gets better for you and that you have a full recovery very soon!
Really, metal health ????? . That pain is fucking brutal .thankfully i was diagnosed the first time with oo . Son of bitch came back twice .after surgery
No-one can comprehend the pain of these things, especially for athletes it is debilitating. Mine was on my scapula next to my rotator cuff. The constant pain of not being able to sit in a car or even sleep, now I think of all the things I took for granted, I finally had my surgery last summer and I am still recovering.
Thank you so much. I have watched this many times, and it has given me hope that the procedures will eventually eliminate my osteoid osteoma and all of the pain. It has taken me 7 years to get it figured out, after many visits to way too many doctors. Our experiences are so similar. I am so glad you posted this and I hope you are still pain free.
Thank you for your lovely comment, I'm glad that this film has brought you some hope and that you have finally been diagnosed after such a long amount of time. Your situation sounds very similar to Megans' and I can only hope that it gets better, that your pain goes away and there is a rise in awareness for this condition.
I suffered with this in my knee and had surgery 4/27/2021 and I am seeing my doctor again on 9/13/2021 to make sure it did not grow back again! The pain was so awful! The worst pain I have experienced in my entire life. I would cry from the moment I woke up until about noon. After I had the surgery, I felt immediate pain relief. The acute pain from the surgery felt like nothing at all compared to the horrific suffering I went though! I am a 46 year old female so it was very odd that this happened to me. I pray no one else ever has to suffer with this 🙏🏻🙏🏻🙏🏻 everyone thought it was in my head too! So glad the X-ray indeed showed something!
The worst pain is that the doctors says that there is nothing in my leg 🦵 this was for me the worst pain because I thought for months that the pain was just a problem in my head and I thought I would have these terrible pains for the rest of my life.
but then luckily I decided to go to the doctor again and luckily they discovered that I had an osteoid osteom (I am being operated on June 26th)
I really relate to this story. I had osteoid osteoma in my second year of high school as well and i was training rhytmic gymnastics. My leg hurt a lot after moving and I just couldn't define the pain. It got to the point where I couldn't sleep at night anymore and I had to eat painkillers every night before going to sleep just to not wake up at night because of the pain. Only then did people around me believe me that something is actually wrong. After seeing this film I am extremely grateful that doctors managed to get the right diagnosis in four months even though at first they thought a had a fracture and had to go to physiotherapy that wasn't working just like Megan did. It was really scary especially because they told me I was going to need a surgery and that i was going to have it the next day. It went good, the pain ended and I learned to walk again and even started training the same year again and I still do which makes me really happy. Thank you for sharing your story!
i just came across your video, i r had osteod osteoma on my right ankle for 7 months and it always woke me up at night, today is my removal and i’m VERY VERY scared, wish me luck
Hi Natalie, ah sorry you've also had to go through this as well - I hope the removal went well? 😊
I know the pain, after a year of seeing different doctors and several mr, xrays and act scan. I have just now been diagnosed with osteoid osteoma. Every time I complained about pain people would look at me like I’m crazy, I wake up every two hours or less, it’s gotten to the point where painkillers don’t work anymore. I have surgery done in about two weeks from now. I am so grateful that I found out where the pain is coming from. Soon I will have no more pain!
I’ve just come across your video. I found out I had osteoid osteoma when I was about 9, it was in my arm which was super rare for a girl. Took them over a year to find out what it was with a similar story to yours. I got told that I had broken my collar bone, arm everything but and also go told it’s me just saying it’s sore and their is nothing there.
I was waking up every 2 hours taking paracetamol all through out the night.
I couldn’t have surgery as I had main arterys and nerves covering the Tumour and was finally give some tablets that were pain relief and anti inflammatory . It eventually went away after about a year on the tablets. I’m 20 now and still get pain when it’s cold or if I use my arm to much. I’ve been back to the doctor and again been told it’s in my head and there’s nothing wrong. I did have a check up but it’s just scar tissue.
Thanks for sharing your story, i know how frustrating it is!
Samantha_Nation thank you very much for sharing your story, although I'm sorry to hear you had to go through a similar situation as well. I hope you are doing okay now, I only hope more people become aware of this issue so these situations stop reoccurring.
DEAR FRIEND Films Yes I’m a lot better, hope you are to? nobody really knew or had even heard of it before, I went to so many doctors and had so many different X-rays and X-rays machines as I imagine you did also. Only really got found through an arm specialist as my regular GP didn’t know and said they learnt about it in Medical School but forgot about it as it was so rare.
Good film. I can totally relate. I had an Osteoid Osteoma in my elbow. It never showed up on many films for five years! The most excruciating pain ever. Finally showed up on my fourth MRI. By the way I had five different surgeries (mainly guesses) on my elbow. Finally I had it removed once they knew the problem. Never had an issue since.
That's unbelievable, so glad to hear you haven't had an issue since! Hopefully an Osteoid Osteoma will become more known for treatment soon :)
My experience is so similar to yours it's crazy. I'm so sorry this happened I've been like this for just over a year you're so strong for doing seven. I'm hopefully getting my treatment soon mine is in my hip. This tumour is so poorly researched and for some reason stupidly hard to diagnose. Even thpugh it should be as simple as an mri or ct scan. Mine doesn't show on x rays. There are no charities for this as far as I can see and it breaks my heart. We need help and support it shouldn't be this difficult to diagnosis something so easily treated.
I have one in my Tibia and I’ll go into surgery next week, I’ll tell you how it goes. Oh and yes, the pain is absolutely horrible.
Sorry to hear that and hope everything with the surgery went well, Karim! 🙌
DEAR FRIEND Films Thank god, everything went well and they removed most of it this time, next week they’ll remove the remaining part but the pain is not as strong as before. Thanks for caring ❤️
Karim Ehab that’s great to hear, I hope the pain isn’t too bad and that you’ve had a nice time over the holidays 😊
Congratulations for your recovery:) I am student studying medical related profession, and find this video helpful. Thanks a lot!
Thank you! Really glad to know this was helpful :)
I have osteiod osteoma in my neck n doctors told surgery is too risky ..some doctors said there is nothing n told to go for mental hospital ..but later I found rfa treatment on Internet n now in this week m going to doctor for it ...I lived your story...
I hope everything is going well with your treatment so far!
DEAR FRIEND Films yes I had surgery it has been removed now I feel good now
DEAR FRIEND Films yes I had surgery it has been removed now I feel good
I hope u are doing well
Hi! Did your whole leg hurt? Or was the pain pretty localized?? Thank you and glad you are better.
Hey this type of tumor pain is so hard to localize where pain is coming from I had one that came back And had to get resection and I’m nail It was horrible
Had the same issue ... went through the same path. Hope you have recovered fully
I'm sorry to hear that, I hope the film has done sufficient justice for the issue. Megan has had a full recovery, thank you for asking - we hope that you also have recovered well and are in good health. Thanks again!
The fact they wasted your time saying it was a mental issue, hope all is well with you!
How much time to recover after the Radio frequency operation
Hi there! For Megan, after the first operation it was around 2 weeks until she could walk properly again, and after the second time it was almost a month before she could properly walk. For Megan, it also took longer to recover than what the doctors had previously thought. I hope this helps!
Same here, the pain is unmanageable!, got 9mm Osteoid Osteoma in my tibia, Recently discovered about Focused Ultrasound, seems to be the way to go, hope it will be gone soon, hope you are fine now :)
I hope you get better soon! Thank you, Megan is much better now 😊
Hey, thanks God that i found ur video, i am adoctor from Egypt, i am nephrologist at Cairo, i have avery bad pain in my lt side of pelvis, i did ct scan
The lesion is in avery critical place
it is in iliac crest very close the joint
I am planning to have ct scan soon to follow up its size then i will Go to interventional radiologist
Do you have advice to me ?
Thanks in advance
Hi there! Ah very sorry to hear about your pain, I hope the further scans give you results that can help and I'm glad you found our video.
We are not medical professionals so we wouldn't be able to advise you on anything, but I will say don't give up on trying to find out what could be wrong.
Megan's journey took 7 years and people didn't believe her for a long time but she eventually got the help she needed. So keep fighting and I hope everything goes positively for you!
I ve the same issue 2 times RFA done by doctor but it’s nt worked
Sorry to hear that, I hope you have a full recovery soon. All the best of luck and thanks for watching
Please, help. I've had osteoid osteoma on femur removed back in 2013 ; and now im feelin symptoms again, which is night leg pain. Is it possible it recurred? Im fucking pissed off...
Really sorry to hear that! I am in no way a specialist but in Megan's case shown in the film, her osteoid osteoma did come back a 2nd time and she had to have it removed again. That was a few years ago now and it has since been at bay as far as we know. Unfortunately, I do think it can come back after the first operation, although I believe the chances of it coming back after your 2nd time are lower than the 1st. I hope this helps and that you feel better soon!
@@dearfriendfilms Thanks for answering, piece of bone was removed and surgery was done twice in a year, second time because it wasnt removed properly if i remember well. Does this lower chances of recurring? Sorry for bothering you with this but i cant consult any doctor rn.
@@zarkoostojic9063 Sorry to hear that, that must have been very difficult. I do remember that the chances of reoccurrence can go down quite significantly after each time you have it removed, although I'm afraid I don't know the reoccurrence rate for each time it is removed, nor how often it can come back for some people. I really hope it gets better for you and that you have a full recovery very soon!
Really, metal health ????? . That pain is fucking brutal .thankfully i was diagnosed the first time with oo . Son of bitch came back twice .after surgery