I figured I'd write in these boards since I'm not 100% sure where else this would be appropriate. A couple of months ago I began having pain in my left leg...I ignored it thinking I had pulled a muscle. The pain got progressively worse over the next month pinpointing below my knee on my upper tibia. It became tender to the touch and a bit swollen then the pain began shooting down my leg. Eventually it got to the point where I could barely hold weight on it, so my doctor sent me for an MRI. She thought I had torn a ligament and that was what was causing the pain. The day after my MRI my doctor called and said she needed me to go for an x-ray and a bone scan she scheduled. I went for the x-ray and directly after they called me and said that the bone scan was now a full body bone scan and changed the date. This made me a bit nervous. All they told me was that they found a lesion on my tibia, I asked for more information but my doctor asked me to wait until my appointment as she would rather talk to me in person, that also made me worried.
I was tired of being nervous and waiting for my next appointment (which is Wednesday) so I picked up my MRI and x-ray results from the radiologist today. Honestly, picking these results up has made it even worse. The first line of the intrepretation caught my attention as it said "This is not a normal study." I thought by "lesion" they meant fracture but apparently I have a cyst/tumor on my tibia! I'm not a doctor, so I am honestly clueless as to what half of this means but it says I have a "bubbly cystic lesion that measures 4.7 craniocaudally x 2.1 x 2.1 cm." It also says I have fluid in the lesion with small bubbly cysts that also have fluid. It says there is extensive bone marrow edema and periosteal reaction...which I am guessing to mean bone marrow damage and my bones are regrowing? I'm not 100% sure.
Anyway, they suggest things such as giant cell tumor, chondroblastoma, osteoblastoma, osteosarcomas, fibrohistiocyctoma, fibrous dysplasia, and Paget's disease. That seems like a TON of different things it could be.
My question to you all is, have any of you ever had something similar to this? I'm freaking myself out thinking it may be cancer. I have my full body bone scan on Dec. 31st and my father-in-law who is a podiatrist says they will most likely do a bone biopsy. Has anyone had a bone biopsy and what is it like?
I can hardly function at work as the pain has become so bad. I'm a grad student but work at Disney part time and have to walk, walk, walk all day long.
Sorry for such a long post, but I am a bit nervous. I'm only 22 and have an 18 month old daughter, so even the chance that this could be cancer scares me to death.
Thanks for all of your help and advice in advance!
Many people get bone cysts that are not cancer, they can just sort of happen. Whether yours is or isn't, I honestly can't say. But it sounds like your doctor is on top of things and investigating thoroughly.
Hopefully when you go in on Wednesday, you will get pain medication as well as answers.
How did your appointment go? Hopefully the new year brought you some good news. I know exactly what your are going through as I have been there (and am your age as well). My tumor was utlimately diagnoised as fibrous dysplasia. I initially had an xray and then was immediately sent for an MRI, CT Scan and full body bone scan and bone biopsy. The sudden "emergency" of having to go for all those tests immediately definitely freaked me out too. Re: your biopsy question, it was really not bad at all. You are on IV morphine the whole time, so you really don't feel much. Ultimately, I did have surgery to remove the tumor and the affected bone. I am now 2 months post-op and couldn't be more pleased w/ the results. Even though I'm still on crutches and not back to normal yet I am more comfortable than I've ever been.
I hope you too find a good ending in all of this. It can certainly be scary, especially before you have a diagnosis. It sounds like your doctor is on top of things and getting you all of the correct tests. The only thing I would suggest is be sure you get to an orthopedic oncologist as they are much more familiar with these things than a regular orthopedist. Feel free to ask me any other questions as I too turned to this board when I felt like I had no idea what was going on.
It's so nice to hear someone else's story with a good ending. I'm glad you are feeling better from your surgery! I feel bad that you are still on crutches though, they tend to hurt your arms after a while!
I have not had my appointment yet but am going on Wednesday. I originally had an appointment with an orthopedic surgeon but upon receiving my records and scan results he scheduled me with a different doctor, an orthopedic oncologist. I am looking forward to this appointment to find out what in the world this cyst/tumor is! All I know for sure is that it is painful and I can no longer bear weight on my left leg. My family doctor put me on Lortab, but it seems like the pain is getting progressively worse because now even the Lortab won't take the ache away.
How was your surgery? How long were you in the hospital? Also, were they able to tell what type of tumor you had prior to surgery or only after? Sorry for all of the questions, I am just a bit nervous, as you said you were!
Yes, crutches are rather annoying (esp now that there is snow on the ground!) but luckily I was quite fit before the surgery so my arms were already pretty strong and as such aren't too tired now.
Getting to an orthopedic oncologist is definitiely the best thing you can do. I was fortunate in that the first Dr. I went to (a regular ortho surgeon) immediately suggested I go to an ortho oncologist as soon as he knew we were dealing with a tumor. He quickly admitted that this was over his head. I got to a great ortho oncologist right after that and he moved quickly to get to the bottom of it.
The surgery went as well as we could've hoped for. They successfully removed the entire tumor, which was about the size of a fist, and the surrounding affected bone. They also repaired the fractures that had resulted from the tumor. I was in the hospital for 4 days and then home on bed rest for 2 wks after that. Then went back to the surgeon and got permission to start to get up and around a bit more. A few weeks later I was able to start lite PT. Now, 2 months post-op, even though I'm still on crutches I'm able to get around and do just about anything I want (w/in reason of course!). I'm hoping to be off the crutches by the end of this month.
They were able to identify the tumor before the surgery as a result of the biopsy. After the surgery, they did send the whole thing to pathology to confirm. I too was at the ponit (pre-op) where no amount of pain killers, lidocaine patches, anything was helping. I wasn't sleeping for wks on end b/c I was so uncomfortable. For me, there has been no amount of post-op pain that can even compare to the level of pain that I was in before. It is truly amazing to begin seeing what a pain free life is like!
I hope you too find a similar end to all of this. I certainly know how trying what you are going through right now can be, but try to keep your chin up. Even though worrying is inevitable, no good will come from getting yourself crazed. Just get yourself into good hands and then trust that they will do everything in their power to help you. Good luck again with everything, keep me posted and I will do my best to check back here regularly.
Hearing your story has put me at ease. It's so nice to hear of someone that has gone through something similar. I'm so glad to hear that you are doing great post op! And also that you are out of pain! Bone pain can definitely get out of hand, I totally understand the not sleeping bit. I take my pill at 11 go to sleep and wake up around 4ish and have to take another. I'm worried I'll get to the point where they don't help at all.
I went to see my orthopedic oncologist on Wednesday. He said it is definitely a tumor and scheduled me for a biopsy on Tuesday. He said if the biopsy comes back benign I will go into surgery to have it removed immediately, if it comes back malignant things will be quite a bit more complicated and I will not be able to have it removed. He is pretty sure it is benign though, which makes me feel a bit better. He said I would likely be in the hospital for 2-3 days and on bed rest for around 2 weeks and on crutches for quite a while.
Did you have to go to physical therapy afterward? I don't remember my oncologist mentioning this and am curious about it. I assume I'd have to but am not 100% sure.
Once again thanks for all of your help! If I don't post before my biopsy/surgery day, I'll post as soon as I can make it to a computer afterward.
That's great news that your oncologist feels it is most likely benign! My oncologist had said the same thing the first time I saw him. You have to remember that they spend all day every day looking at bone tumors, so unlike a regular orthopedic surgeon who just realizes it is a tumor, the ortho oncologist is able to have a pretty good initial sense as to whether or not what they are looking is malignant. That being said, my Dr. did send me for every test to be certain of what we were dealing with (at this point I had already had xrays and an MRI from the 1st orthopedic surgeon I saw, so the oncologist sent me for a CT guided biopsy, full blood work and a full body bone scan).
What you are going through sounds very similar to what I went through. When I started on the pain meds, I would only take them at night (so that they would work well enough to buy me a few hours of sleep). Initially, they did just that. I would be able to sleep for about 4 hourse at a time and then the pain would wake me up like clockwork and I'd have to take more. Eventually the window of sleep got smaller and smaller and eventually I wasn't sleeping at all (sometimes for days or weeks on end... really not so fun). As a side note, once I found out my tumor was benign, I tried to avoid surgery for a little while. When the pain meds stopped helping at all, my ortho oncologist said it was time for it to come out. Now, in hindsight, I have no idea why I waited so long!!
As for PT, that will for sure be part of your recovery. I was in the hospital for 4 days after my surgery, then home on complete bed rest for 2 wks after that. I started PT (3x/ wk) just about a month after my surgery and was prescribed 3 months of PT. At first it was quite lite and has gotten progressively more intense as I've gone along. It has now been 9 weeks now since my surgery, and I am still on crutches (so yes, you will be on crutches for a while unfortunately). I am hoping to be off of the crutches w/in the next 2 weeks!
Good luck with everything this week. My fingers are crossed for you! If it cheers you up at all, I had wireless internet in my hospital room! I would imagine most hospitals have that these days. Even though I couldn't really keep my eyes open for more than 10 min at a time, it was nice to be able to check in with the outside world every now and then.
Sorry for the delayed response, I haven't been online a lot since my surgery! I had surgery on January 13th. My orthopedic oncologist did the surgery, he went in and did a biopsy first and after discovering it was an aneurmysal bone cyst he removed it by cutterage (sp?). He filled the hole with a type of cement. I have seen the X-Rays and goodness gracious, most of my bone on my top tibia is gone! The doctor seemed surprised at how much he had to take out! Only the outer portions of my bone are left in tact.
After surgery I was in a bit of pain but nothing compared to before surgery. I had my stitches removed a few days ago but am still on crutches for at least another three weeks, if not longer. My muscle feels week in my calf and I'm only partially weight bearing. I am ready to go back to work but cannot do so on crutches as I have to be able to fully walk at my job. But I'm ready to be off of these crutches!
Thank you for your advice and support, I'll keep you updated on how my recovery goes!
EDIT: I forgot to ask how you are doing?!?! Are you still on crutches, how about PT? Are you in any pain? I hope you are well!
Last edited by DazzledStar; 02-04-2009 at 09:12 PM.
I'm SO glad to hear that your surgery went well and that you are on the mend! I told you the post-op pain would not be nearly as bad as the pain you were experiencing before the surgery I too had the tumor removed via cutterage and then the cavity was filled in with both bone allograft and cement. Yes, the look of the xray can be rather shocking when you see just how much was taken out but I for one sure love the look of nice bright white cement in there as opposed to the big black abyss that was there before!
It is perfectly understandable that you still feel weak at this point. You will find, however, that every single day that goes by you feel a bit stronger than you did the day before. Have you started PT? I am obsessively religious about doing all of my PT and home exercises and I can tell you that doing so has really helped speed along the recovery. I am VERY excited to report that after being on crutches for 3 months, I am finally off! It is so liberating! Hang in there and do everything you are told and I am sure you will be off soon.
Other than that, I'm doing pretty well. Thanks for asking. The only "dissappointing" thing that has happened is that I got the final pathology results back and found out that my tumor was not fibrous dysplasia (as we had thought from the biopsy) but was actually an even more rare tumor called Chrondromyxofibroma. The disheartening thing is that this particular type of tumor is very aggressive (MUCH more so than FD) and has a much greater chance of coming back (and a small possibility of coming back malignant). Oh well, I can't let myself harp on that. My Dr. just said that as long as we watch it carefully (CT scans every 6 months) I will be fine and that if it does come back we will be able to catch it early and deal with it at that time. I totally trust my Dr. so I know I am in the best possible hands. I am also a very positive thinker, so I am just not going to allow it to come back! Period, end of story!
Anyway, so glad to hear that you are doing well. I promise you that every day will get easier until the pain you were in pre-op will feel like a distant memory. Keep in touch and keep up the good recovery!!
I'm so glad to hear that you are off of your crutches, well done! Your underarms must love you now! I actually have not started PT and do not know if I will. My doctor hasn't mentioned it and when I went in for my first post op appointment I saw his assistant rather than my own orthopedic oncologist (he was out of the country) and he had no idea. I'm thinking my doctor would have said something about PT if I needed it though. My cyst was in my upper tibia and they didn't have to cut through any muscle to get to it so I may not need it but, I am going to have to work on getting my calf muscle back into shape, 3-4 weeks of not utilizing it has gotten it flimsy! Also, my leg has so much dried skin from being wrapped up! That will be nice when it goes away. My scar is actually so neat I'm surprised. My mom had a knee replacement and her scar is jagged and huge. Mine is just a nice straight line.
Sorry to hear about the pathology results. I'm sure everything will be fine as long as your doctor keeps an eye on it. Also, if they did a good job with the cutterage (which I'm sure they did) then I doubt it will come back. Apparently, aneurmysal bone cyst also have a chance of coming back (but not malignant) so I will also have to be scanned about every 6 months also, how fun! At least we're sort of in the same boat!
Thank you so much for all of your help and advice! Keep me updated on your recovery too!
That's great that they didn't have to go through any muscle! That certainly makes a big difference for the recovery time. I would still imagine that you would need some type of PT to get those calf muscles back in shape "safely", but I could be totally wrong. Regardless, I'm sure it'll come back more quickly for you than most (as was the case for me) b/c I think I recall you saying that you were very physically active (as I was) before all this happened.
How long did you end up being in the hospital for? That's great that your scar is so neat. Mine is too!! Other than being wider at the top and bottom, the middle section is pretty much just a line. It's amazing how much they can do w/o leaving you looking like frankenstein.
We should have bi-anual celebrations every time we go for CT scans and then they come back clean !
Anyway, I'm so glad that I was able to help you in some way. It is nice (for me too!) to be able to speak with someone dealing with a similar situation. Be sure to keep me posted on your continued recovery as well.
My recovery is going well, I'm still partially weight bearing and on crutches. Although, I usually walk without the crutches in my house...I feel pretty comfortable but often overdo it. I can feel pain in the area when I walk too much but the pain is no where near the level it was prior to surgery! I am definitely ready to be off of the crutches though. I haven't had any PT nor had my doctor ordered any, I have full movement in my leg, so I think I'm ok. My calf muscle is just a bit weak.
My other problem is my liver. I have a tumor on the right lobe of my liver and am having a biopsy in the morning...I am a bit nervous!
How is your recovery going? Glad to be off of the crutches?
So glad to hear that your recovery is going so well but am sorry to hear about the liver problem. My fingers are crossed for you that this biopsy has a similar result as the last one. How did you find out about this tumor? Please let me know how it goes tomorrow, I will keep you in my thoughts.
My recovery is going well thanks. Had some setbacks recently as a result of overdoing it, but I am hopefully back on the road again. Yes, I am SO glad to be off of crutches. After being on them for 3 months I could not be happier to be rid of them!