Severe leg pain, please help!

G

GAGO

New member
Hi everyone,

I am fairly new to the boards and was wondering if anyone could help me. I have been having a pain in my left tibia for about a month now. Lately, the pain has gotten so severe it wakes me up at night and I am unable to walk without stumbling and being in horrible pain. The pain shoots down from the top of my tibia, where it is a bit swollen and puffy, down to my ankle. The pain is so bad I dread having to move anywhere, even to the restroom. It even hurts when I am just sitting down, it feels as if someone is stabbing me right in my bone. The pain is not in my knee but directly below my knee, on the top part of my tibia and when I walk it shoots down my leg. I went to my doctor yesterday in tears because I couldn't take it anymore. She scheduled me for an MRI on Wednesday and believes I may have a ruptured ligament? I have never heard of this before.

My question is does anyone have any advice on what this could be and how to deal with the pain? I have a very high pain tolerance, I have broken my foot and my wrist and was never in tears before. :( My doctor did prescribe me pain mediciation, which I know I need to take...I just hate taking it because it makes me feel rather loopy. Aside from the mediciation, does anyone have any advice? I'd greatly appreciate it.

Thank you in advance!
Jamie
 
well i am very glad to hear she at least placed you something other than the darv. is it working any better for you? it is a better choice for now anyways. just wanted to wish you some good luck with that oncologist. hopefully things are not as bad as they may seem. please keep me posted jamie. FB
 
Well, I picked up my x-ray and MRI results, reading them is not helping me a whole lot with my stress level. My in-laws deciphered them for me a bit, but my father-in-law is a podiatrist and my mother-in-law has her PhD in nursing...so they helped a bit. Really, all I got from the results is that I have a "large bubbly cystic mass" that measues 4.7 x 2.3 x 2.1 in my upper tibia. It seems to have fluid in it and has smaller lesions filled with fluid around it. There's bone marrow edema (damage? I assume) and a periosteal reaction...which I have no idea what that means. At the bottom of the study it suggests far too many things from a giant cell tumor, chondroblastoma, osteoblastoma, osteosarcoma, and fibrohisiocyctoma...and also Paget's disease. I really won't know anything until my doctor appointment on Wednesday or probably after my full body bone scan. My in-laws are saying a bone biopsy is very likely. Ugh, this is not really the news I was looking for...but I'm still hoping for the best!
 
as i was reading this,i too started to think knee injury of some kind. i have an injured knee along with having a really ugly pain syndrome in it(RSD) that causes me horrid bone pain in the head of my tibia and the head of my femur too. i had to have two knee surgeries a couple of years ago. elevation and ice really can help,sometimes even more than the narcotics can. trying to stay off of it as much as possible also helps some. but realistically,things are not going to really get better til the damage gets repaired. its just the nature of injury.

one other thing you can try here for that bone pain itself,is using moist heat wrapped around the actual painful bone area but still use ONLY the ice on the knee area. sometimes using both ice and heat together for certain injures really works out well. it all depeds upon what is actually causing your pain. bone painjust generally will respond much better to moist heat. sice fromwhat you have explained here,that bone itself is not injured it would be okay to use heat. it really sounds like whats called 'referred' pain fromthe knee damage. there are so many different ligaments within our kneesthat just give it the abilitys it has. when anyof those gets injured it can create some big problems. i had whats called abakers cyst from a tear in the synovialsac that surrounds the joint? this sucker was bigger than a tennis ball and sticking out thae back of my knee.then i also tore the meniscus,then it was time for my first surgery.

one great thing here is they usually use arthroscopic surgery which only involves making really small cuts into the surrounding knee area,then they use a scope to look inside and fix the problems from there too. its pretty minimal as far as some surgeries go.they do try and get you up and about pretty quickly too post op so you don;t suffer muscle atrophy or a frozen joint. that can happen pretty quickly when we are off our feet for too long. this should be a pretty straight forward type of surgery for you that is non invasive as some surgeries go. just do whatever feels the best for your pain. but try and keepthat heat away fromthe area of injury within your knee. using heat on only that bone should help,espescially if you are also icing that knee. the standard rule of thumb when using ice is twenty min on every hour, no longer or you could develop other problems. the heat thing you can do pretty much anytime,if it works for you. there is just something about bone pain and heat(espescially moist heat) that really helps. but if for some reason,the heat makes your particular pain worse,just switch to the ice there too but still follow the 20 min rule. aleeve or avil may also help too.just switch between your narcotic and the advil and see how it goes. there is just probabaly alot of inflammation going on in that knee right now or your tibia would not be feeling it too. so using the anti inflammatories can help. good luck with this and please keep me posted, FB
 
i would seriously call your docs office and ask to have a call back for the MRI results,they actually get them within about two to three days of the MRI being done. it certainly does not take that long to just find out what you may be dealing with,that much i DO know. your doc "should' have called you when the results hit her office actually. this is what my primary has always done with me thru every 16 MRIs i have had to have on various body parts over the past eight or so years. i can guarentee you,your doc already has those results by now. and you DO NEED and deserve to know just what possible injuries you may be dealing with now.

i would call her office today and demand a call back by the end of the day just to find out what you may have going on. your doc simply owes you that much. you do not have to wait for the results when she has them right there already. one phone call would help you tons right now. you DO have certain rights to your own medical info. you can also go to the place where you had the MRI done,and fill out a release of information and they can give you a copy of your own results right there. its just a matter of printing it out on their end. no biggie really. but i would mosr certainly call your doc today for that call back. hopefully things are not as bad as they may seem. please keep us posted hon, FB
 
Thanks for the advice feelbad! The heat helps a bit but the ice seems to be a big no no. I would equate the feeling to having a cavity and putting something very cold on it, it hurt! I'm sorry for everything you've been through, but glad to hear that it seems to have worked out! I can't imagine having something the size of a tennis ball sticking out of my knee, yikes!

I had an MRI on my knee and tibia two days ago. My doctor put me on Ultrium and said to stay off of my leg. Honestly, I have to work and walk all day at my job, so I am not sure how she expects me to not walk. I'm sitting here wondering how I'm going to make it at work tomorrow when I can't even walk to the bathroom without pain. :( I'll update you once I get the results of my MRI, which isn't until Christmas Eve! I'm seriously contemplating calling my crazy doctor and asking her how she expects me to walk for a week and a half more.
 
wow,now who expected all that? a large "bubbly" mass? never heard of something in the bone described that way,tho i do have that in both my kidneys from polycystic kidney disease. i have a ton of large bubbly looking masses,just huge cystic globs. but i wonder what this actually is IN your tibia? the bone marrow edema is more than likely there from inflammation,i have this too as a 'normal' finding in my RSD knee. that is the very dull ache you probably feel too? i just know what mine feels like. i too would imagine a biopsy would be the next step just to better define what that is,it would take a biopsy to truely know. at least now ya know whay they wanted the whole body scan. hopefully this isn;t something that cannot be managed or treated somehow for you.

just how are you doing with the pain at this point? i know bone pain can get a bit out of hand at times. use whatever actually "feels good' either heat or ice on it. if you need something more than just the ultram,DO ask your doc for something a bit stronger to help. you should not have to suffer with this when there are certain meds out there that could help alleviate that. one thing i have found that really helps with the sometimes pretty intense bone pain i also get now in my upper arm after having a rotator cuff repair done last year is lidocaine patches. these could possibly help some too in just trying to numb the area. sometimes you can get it thru to the bone area too. just a suggestion that may help some. whatever works,ya know? please keep me posted on things. you will just have to wait and see how this all plays out. just keep hangin in there til you know what you are actually dealing with. i do hope you have a good christmas,just try and concentrate on that for now. take care, FB
 
Hi FB!

Well I went to the orthopedic oncologist today, he seemed very nice. He said that it is definitely not a cyst and is a tumor. He cannot be 100% sure if it is benign or not. He is worried about the tumor in my liver and asked for me to have my hepatologist call him. I am scheduled for a bone biopsy on Tuesday, if the biopsy comes out benign then I will go immediately into surgery to have the tumor removed. If it comes back malignant things will be a bit more difficult, he said the surgery for a benign tumor and the surgery for a malignant tumor are very different and many more precautions have to be taken, so the surgery would not happen on Tuesday if it is malignant. I am hoping to have this all over and done with on Tuesday and am hoping that it is benign! Until then, I am stuck in pain and confined to crutches. He does not want me to walk in fear that my bone is so weak it could break. So, this could all turn out good or bad, I'm just taking it one day at a time. I'll try and post before my surgery and if not then after for sure.

How have you been? Are any of your problems acting up?

-Jamie
 
Thanks FB and AnnD for your support and advice!

Today I received a call from the doctor or radiologist at the place where I had my MRI done asking if I had any x-rays done, I said no and he said ok. Later my doctor calls me and says they found a lesion? on my tibia below my knee and need me to come in for an x-ray on Friday and then a bone scan on Tuesday. I'm not even sure what a lesion is? I'm lucky I only have 6 hour shifts lately because if I had any longer I wouldn't be holding up too well! Unfortunatley, I work in attractions at Disney and my job is standing all the time and moving fast to get people on and off the ride, blah. :(

I'll let you all know how my x-ray comes back!
 
for me,everything is always kinda "acting up' but it has just become the norm pretty much. wow it sounds like that day will determine alot for you huh? yes,when something is either malignant or benign,it REALLY will change the way any surgical removal is done. they have to make certain they get clean margins whenever they are removing anything that is malignant,just to make certain that they "got it all" kind of thing? hopefully this is just a "something" that decided to grow there and can be safely removed with no real follow up after. that biopsy will tell them alot. it would be great to have this all over on tuesday. i certainly DO hope for all the best for you with this,and alot of luck too. sometimes all you can do is simply go one day at a time. you will get thru this. please keep me posted as to how things are going with you,K? good luck jamie, FB
 
walking IS going to make this worse,its just what occurs with most knee injuries.you may not be able to actually do your job til this gets fixed,or just may have to get a bit creative at work for awhile. while i can totally understand where you are coming from here with needing to work,you also have to look at the longer term ramifications of not taking care of this injury properly too. it could become worse and cause you even more lost time from work,ya know? you have an actual 'injury" here that needs surgical intervention to fix,i would think either your work could possibly accomodate you til this happens or you may just have to take off work for awhile. you just need to look at the bigger picture here and what could come from not doing the right things for yourself right now,ya know? i KNOW how much this sucks for you right now,but you do need to do all the right things now to prevent things from becomming even worse in the future.

could you possibly use crutches there or even a wheel chair temporarily to accomplish your job? just some thoughts. but you are the most important thing here right now. what you do or don't do now will have an impact on your future,in some cases,in a very big way. you just do not want to create an even bigger problem that will take much longer to heal(becasue of more damage to have to repair in that knee) so you can actually "get" to work again. you have some decisions to make,but need to make them in YOUR overall best interest right now. you just do not want to end up with chronic knee pain or problems becasue you did not take that time off the injured knee,thats all i am trying to say here actually,in a very long winded way,lol. just see what they can do at work for you,if they cannot accomodate this,you need to do the right things for yourself til this can get fixed. just be realistic in what you are expecting or want to still be able to do considering what is going on right now with your knee. good luck hon,and please do keep me posted. FB
 
Hi FB,

Thanks for all of your concern! It's nice to have someone to talk to about all of this madness. It seems like you have been through a lot with all your bone troubles, especially in your arm it seems, and the kidney trouble...that must have been painful! I hope you are feeling well!

I went into my doctor on Christmas Eve. She basically told me the MRI results and then also told me I had to have a liver biopsy on another tumor in my liver (which I knew I had). They thought it was an adenoma or FNH, but are not so sure now due to the nuclear scan results...joy. She is wondering whether my liver tumor and leg tumor are connected somehow, I honestly have no idea.

She set me up for an appointment with an orthopedic oncologist, she said that no matter what the tumor will have to come out, as it is very large and weakening my bone. Overall, my pain is getting progressively worse, I can barely walk and often find myself stumbling. The pain is constantly a dull ache, with sharp stabs of pain shooting down my tibia about 5 times an hour, especially when I try and walk. I've become accustomed to crawling with my 18 month old...its just easier that way! So far no pain meds have worked, they have me on Darvoset (sp?) but it doesn't really help. Heat helps a bit and ice is a big no no, for some reason that hurts!

I'll give you an update after my full body bone scan on Dec. 31. Hopefully the tibia and liver are my only problems!

-Jamie
 
first of all,darvocet is basically nothing for what you have described here and from what i know my bone ick actually feels like. something like an oxy based med or at the very least here lortab 10/500 or 5/500 vicodin would be very MUCH more appropriate for your level and type of pain. you should NOT have to suffer like this. your doc HAS TO know that this pain and what you are dealing with has to be pretty painful. it IS part of her job to just "appropriately"(and this IS the key word here) treat your level of pain. thats just sick,really. you just should NOT have to suffer when she can make that much much better for you using the right meds. have you tried some level of anti inflammatory for this? even taking two aleeve in the morning and again like later in the day may help with bone pain. some of your pain IS from inflammation so it would make sense to try this. you would probably get much more from the anti inflams than simple darvocet.

i would seriously call your doc and tell her this is NOT working for you and ask if there is something else you could try that actually would. bone pain simply 'HURTS' and aches and throbs and can really get ugly,believe me. i spent a few nights holding my arm and just rocking back and forth in my bed. you just 'deserve' appropriate level pain management for what you are dealing with,its that simple.

so what was this "tumor" in your liver actually described as? i am assuming it was found during some type of actual scan or ultrasound at some point? did it state tumor or "lesion"? hopefully your new oncologist will be able to better manage what your pain is much better than this stupid doc you have who actually thinks that darvocet will even touch bone pain or pain from ANYTHING that is actually IN any bone. alot of things can cause bone pain but what you actually have there would casue some pretty high levels just having that 'something" actually IN a bone,anywhere,ya know? hopefully you can call on monday and request at least a call back from your doc about getting something much better for your pain(for gods sake,she KNOWS what you are actually dealing with here ya know?). any of the hydro based meds i mentioned above CAN be called in to your pharmacy,unfortunetly the oxycodone based meds cannot and those would require a written RX with no refills allowed. but i do think the hydro meds would be much more appropriate,at least much much better than the darvocet would. god,i really didn;t think any docs actually still Rxed that med. it is pretty pathetic on anything but pretty basic pain,really.

i definetly would give the aleeve a try tho too. this med i lived on for two years while waiting to get my c spine fusion done from a herniation. you only have to take it every 12 hours,but ten is actually more realistic. it CAN help with the type of pain you have. do you know yet when you will be seeing this other doc? i do hope something will help with the pain better than what you have right now. if the ice hurts,go with heat instead. whatever 'feels' the best is what i go with on any given pain area. not all pain/injurys repond the same to ice or heat. good luck and please DO keep me posted. but call your doc on monday,K? she just has to know how really bad this can get and should be much more caring and compassionate considering,ya know? FB
 
Hi FB!

Well, I had my surgery on Tuesday and it turned out to be an aneurmysal bone cyst. So, it was taken out, yay! I stayed overnight in the hospital and went home the next day. I have been taking it easy, I'm on crutches and no weight bearing as of yet. I find I have trouble moving my leg upward...actually I can't at all but, I'll be going to physical therapy for that. I'm just relieved that this is all over and done with. My leg feels better already and I don't have a constant stabbing pain, which is very good!

Thank you again for all your help, advice, and support! Keep me updated on things with you! I hope you are feeling well and no new problems have come up. I'll still be around on the message boards, so I will look for you!

-Jamie
 
Gosh I am so sorry for you having to deal with this pain and seemingly no diagnosis? What kind of doctor are you going to that he/she has not made a diagnosis? We all have to work and few can take a week or two off just because doctor say to...why is the doctor telling you to stay off your feet? Can you use crutches? And why on earth is it going to take so long to read your MRI? I think I would call the hospital and see if the Radiologist can read yours ASAP as you need to work...at least find out if it is because of the radiologist not reading it. The Radiologist reads your MRI and then he/she sends the report to you doctor and gosh that is a very long wait for someone to read you MRI or is it you own doctors office that can't see you until then? If that is the case then I would be calling the doctors office demanding a sooner appt. But first find out why the lengthy wait...is it the hospital or is it your own doctors office that doesn't have an opening on the books until christmas eve...or is your doctor on vacation until then?. This is all really bizarre to let you suffer so long without a knowing what is wrong. Tomorrow i go in for an MRI of my knee and my doctor will know tomorrow what the radiologist's report is. I think I would finding out why the delay in finding out the results because someone is telling you a story. good luck.
 
Hi FB-

Sorry I have not replied in a while! I have not seen the orthopedic oncologist as of yet, my appointment is Wednesday. I hope that day will bring a lot of answers! As for my liver tumor, they believe it is a liver adenoma, caused by birth control. My hepatologist wants to do a liver biopsy to be 100% sure it is a benign adenoma. Sorry this post is so short, I'm not on Lortab, which makes me very sleepy after taking it! I will update you after Wednesday and my visit with the orthopedic oncologist.

I hope you had a wonderful New Year!

-Jamie
 
well at least you know something more than you did before,thats progress. there are many different types of lesions that are possible to have. i had a vascular type lesion actually grow inside of my spinalcord. what you have there could very well be a vascular one too. it will just take some time and more testing to actually find out what this particular lesion consists of. please keep us posted as to what you find out. good luck, FB
 
no problem,i am just so happy for you that it wasn't that worst case scenerio. i have never ever actually head of any real 'aneurysm" growing inside of a bone? did they say whether or not this was some type of congenital malformation that was just there the whole time but wasn't symptomatic til now kind of thing? it just sounds very crazy since the bones themselves don;t carry the same type of actual bloodflow like the rest of our bodies where you can get aneurysm(a bulge in an arterial wall). i know i was born with a veinous form of vascular malformation inside of my spinal cord. and also developed an actual brain aneurysm back in 2005,but man that is a new one on me. there are also hemangiomas(this is what i had,veinous) you can get in just about anywhere in our body,including bones. these are also congenital in nature. thanks alot for getting back to me and i am really happy for you jamie. hope all continues to heal and get better from here for you. FB
 
Well, I had my X-Rays done today but no results yet...or at least I haven't heard a diagnosis from my doctor. Instead they called and canceled my bone scan on my left leg and told me I had to go for a full body bone scan instead on the 31st. I still have my appointment on December 24th and they said on the phone it was ok to walk on my leg that it wouldn't hurt it, although it may be causing me pain. I am a bit worried about this full body bone scan...what in the world do they need to do this for? I know I'll find out the reason on the 24th but for now I'm a bit worried!
 
so they didn't say anything at all about that lesion then? the only thing i can think of would be that they just want to see if you have anymore of whatever that lesion is anywhere else? or they may just want to see how your bones are? it really is hard to say sometimes just why are docs order certain tests,espescially when we have not actually spoken to them. at least it isn;t too far away. believe me,i do know how much the waiting sucks. unfortunetly that too comes with the territory with any tests. look at it this way,at least they are checking out alot ya know? please let me know when you hear anything at all,K? good luck hon, FB
 
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