Is it possible that MRIs just don't work on some people?
July 9, 2012 9:31 AM Subscribe
Is it possible that MRIs just don't work on some people?
Some of you may have seen my previous posts from fall talking about leg pain I was having from a bike. I tried raising the seat, using a lower gear and avoiding hills, and had it checked out by a bike shop, all to no avail. I can only conclude that there was something about the bike that my body didn't like, so I sold it. (My previous bike had never given me any problems.)
While the overall thigh pain subsided over the winter, I still have one symptom remaining: a painful swollen lump on the outer side of my left thigh, above the knee. I've had it since September 2011, and any kind of physical activity makes it worse.
I've had several tests, all turning up negative: 3 x-rays, 2 MRIs, an EMG, a compartment syndrome test, and a vein test. I know YANMD, but I've now gone through 3 doctors who have told me that they give up and can't help me any further. I was thinking that my symptoms seem to match tendinitis or tendinosis, but was told by one of the doctors that they would have shown up in one of the MRIs.
Then I started wondering if maybe for some reason, it just hadn't shown up. I remembered that 2 years ago I came down with excruciating headaches that only went away when I laid down. I got 2 MRIs that showed nothing, and in the end, the doctor diagnosed it as a spinal fluid leak because there was no other explanation. He said it would eventually heal on its own, and it did.
I started wondering if there is some issue with my body that could be preventing MRIs from working properly? My spinal fluid leak didn't show up, even though it should have. It sounds crazy, but I'm really grasping at straws here, as I've run out of doctors willing to help me. Or is it possible that in some cases, tendinitis might not always show in an MRI?
Of course, the other explanation is that I'm just a big faker or a hypochondriac. I suppose there's no way to convince you that I'm not, other than to say that the doctors I've been to have seen & felt the swelling on my leg (because it's always there). And I had never heard of a spinal fluid leak before I was diagnosed, so I had no way of imagining or faking exactly the right symptoms for it.
So, just looking for any thoughts on whether there are cases where MRIs don't work on certain people (although I know it's unlikely), or cases where tendinitis might not show in an MRI, or possible causes of leg swelling/pain that don't show up on an MRI.
Some of you may have seen my previous posts from fall talking about leg pain I was having from a bike. I tried raising the seat, using a lower gear and avoiding hills, and had it checked out by a bike shop, all to no avail. I can only conclude that there was something about the bike that my body didn't like, so I sold it. (My previous bike had never given me any problems.)
While the overall thigh pain subsided over the winter, I still have one symptom remaining: a painful swollen lump on the outer side of my left thigh, above the knee. I've had it since September 2011, and any kind of physical activity makes it worse.
I've had several tests, all turning up negative: 3 x-rays, 2 MRIs, an EMG, a compartment syndrome test, and a vein test. I know YANMD, but I've now gone through 3 doctors who have told me that they give up and can't help me any further. I was thinking that my symptoms seem to match tendinitis or tendinosis, but was told by one of the doctors that they would have shown up in one of the MRIs.
Then I started wondering if maybe for some reason, it just hadn't shown up. I remembered that 2 years ago I came down with excruciating headaches that only went away when I laid down. I got 2 MRIs that showed nothing, and in the end, the doctor diagnosed it as a spinal fluid leak because there was no other explanation. He said it would eventually heal on its own, and it did.
I started wondering if there is some issue with my body that could be preventing MRIs from working properly? My spinal fluid leak didn't show up, even though it should have. It sounds crazy, but I'm really grasping at straws here, as I've run out of doctors willing to help me. Or is it possible that in some cases, tendinitis might not always show in an MRI?
Of course, the other explanation is that I'm just a big faker or a hypochondriac. I suppose there's no way to convince you that I'm not, other than to say that the doctors I've been to have seen & felt the swelling on my leg (because it's always there). And I had never heard of a spinal fluid leak before I was diagnosed, so I had no way of imagining or faking exactly the right symptoms for it.
So, just looking for any thoughts on whether there are cases where MRIs don't work on certain people (although I know it's unlikely), or cases where tendinitis might not show in an MRI, or possible causes of leg swelling/pain that don't show up on an MRI.
MRI scans are exceedingly good at imaging the situation with your muscles, ligaments, and bones. I don't think you can have an MRI 'not work' unless you made a lot of movement during the scan. The technician would have said something and redone it and the doctor would not 'read' the scan if it was blurred. I've had a few MRIs and they redid one because I moved too much. IANAD, but I think it's unlikely the MRI is missing something.
You might try an Osteopath. Kind of a middle ground between a MD and a Chiropractor, they specialize in muscle/skeletal issues and how your whole body is working. They helped me with my rotator cuff after I was getting nowhere with the traditional MD approach.
Good luck.
posted by Argyle at 9:40 AM on July 9, 2012
You might try an Osteopath. Kind of a middle ground between a MD and a Chiropractor, they specialize in muscle/skeletal issues and how your whole body is working. They helped me with my rotator cuff after I was getting nowhere with the traditional MD approach.
Good luck.
posted by Argyle at 9:40 AM on July 9, 2012
the doctor diagnosed it as a spinal fluid leak because there was no other explanation.
I would say your doctor speculated that it was a spinal fluid leak. In reality, there are a million reasons why you could have had excruciating headaches (if not a million, seriously thousands) that went away on their own. Without proof, I would feel dubious that I for sure had a spinal fluid leak.
I am not an MD doctor, but I am a biomedical scientist. I can't envision a way that an MRI would just not work for some people, unless they were fundamentally different on an atomic level from the rest of the living world. That being said, if you moved during the MRI and what they were looking for was very, very tiny and difficult to see, they could miss it. However, with the number of tests you've had so far I'd say that is unlikely.
Unfortunately, modern medicine really has more questions than it does answers, and my experience is that it is mostly educated guessing. There are few things that can be said with absolute certainty.
I hope that your leg feels better soon.
posted by corn_bread at 9:41 AM on July 9, 2012 [5 favorites]
I would say your doctor speculated that it was a spinal fluid leak. In reality, there are a million reasons why you could have had excruciating headaches (if not a million, seriously thousands) that went away on their own. Without proof, I would feel dubious that I for sure had a spinal fluid leak.
I am not an MD doctor, but I am a biomedical scientist. I can't envision a way that an MRI would just not work for some people, unless they were fundamentally different on an atomic level from the rest of the living world. That being said, if you moved during the MRI and what they were looking for was very, very tiny and difficult to see, they could miss it. However, with the number of tests you've had so far I'd say that is unlikely.
Unfortunately, modern medicine really has more questions than it does answers, and my experience is that it is mostly educated guessing. There are few things that can be said with absolute certainty.
I hope that your leg feels better soon.
posted by corn_bread at 9:41 AM on July 9, 2012 [5 favorites]
I'm seconding an D.O. it's a different mind-set. They are as highly trained as MD's, they are just more holistic in their approach.
posted by Ruthless Bunny at 9:42 AM on July 9, 2012
posted by Ruthless Bunny at 9:42 AM on July 9, 2012
There are so many possible factors at play here that it's difficult to say anything with certainty. If you don't think you're imagining it, then you're probably not imagining it. The next question is whether the particular MR imaging technologies that you have experienced are capable of identifying and helping diagnose your issue.
You see, there isn't really anything called "just MRI." You can think of an analogy between MR scanners and film cameras. The camera body may be the same, but there's a giant range of film types you can use with it: color film, B&W film, fast film, slow film, grainy film, infrared film, and so on. And then you add the range of all possible lenses to your camera: wide angle, zoom, macro, etc. What you capture with any one combination only shows you a very specific aspect of what's in front of the camera.
Obviously, none of these things have an exact analogy in the MR world. But whatever is going on with your leg may not be adequately captured by standard MR imaging protocols. It's not so much that they "don't work" on you — that would be as silly as saying that cameras "don't work" on you. It's just that MRI hasn't been very helpful in diagnosing your condition.
posted by Nomyte at 9:46 AM on July 9, 2012 [2 favorites]
You see, there isn't really anything called "just MRI." You can think of an analogy between MR scanners and film cameras. The camera body may be the same, but there's a giant range of film types you can use with it: color film, B&W film, fast film, slow film, grainy film, infrared film, and so on. And then you add the range of all possible lenses to your camera: wide angle, zoom, macro, etc. What you capture with any one combination only shows you a very specific aspect of what's in front of the camera.
Obviously, none of these things have an exact analogy in the MR world. But whatever is going on with your leg may not be adequately captured by standard MR imaging protocols. It's not so much that they "don't work" on you — that would be as silly as saying that cameras "don't work" on you. It's just that MRI hasn't been very helpful in diagnosing your condition.
posted by Nomyte at 9:46 AM on July 9, 2012 [2 favorites]
Response by poster: I would say your doctor speculated that it was a spinal fluid leak. In reality, there are a million reasons why you could have had excruciating headaches (if not a million, seriously thousands) that went away on their own. Without proof, I would feel dubious that I for sure had a spinal fluid leak.
It wasn't just the headaches - it was due to the fact that the headache would disappear within a few minutes of laying down, and as long as I stayed that way, I felt fine. Within minutes of standing up or sitting, they would come back. He said that this was the classic symptom of spinal fluid leaks. Also the fact that I was at an amusement park when it started, and he had heard of cases where these leaks developed after being on a rough ride - which I had been.
Anyway, didn't mean to take the thread in another direction here. The responses so far have been helpful, but I could always use more!
posted by LaurenIpsum at 9:55 AM on July 9, 2012
It wasn't just the headaches - it was due to the fact that the headache would disappear within a few minutes of laying down, and as long as I stayed that way, I felt fine. Within minutes of standing up or sitting, they would come back. He said that this was the classic symptom of spinal fluid leaks. Also the fact that I was at an amusement park when it started, and he had heard of cases where these leaks developed after being on a rough ride - which I had been.
Anyway, didn't mean to take the thread in another direction here. The responses so far have been helpful, but I could always use more!
posted by LaurenIpsum at 9:55 AM on July 9, 2012
Get a second opinion with an expert/specialist. Not just a doctor. Maybe a clinic that specializes in something like this. Look up specialist nationwide and do some searches. I think it is weird but don't rely on just what these doctors tell you. This may be something that not many may have familiarity with. Frankly I am quite wary of the medical professionals as a lot of them follow what they have learnt in school but do not broaden their horizons to keep up with trends/issues.
posted by pakora1 at 10:05 AM on July 9, 2012
posted by pakora1 at 10:05 AM on July 9, 2012
MRIs work because your body is a large sack of water in varying densities. The only way it wouldn't work is if you're some alien species :)
posted by sbutler at 10:07 AM on July 9, 2012
posted by sbutler at 10:07 AM on July 9, 2012
Response by poster: Sorry, I should have specified what the doctors were. I've been to 3 orthopedic doctors, one of whom refused to see me after I had already arrived, saying they don't do second opinions. The other two, after doing a few tests, basically told me that nothing appears to be wrong from the tests (despite the obvious swelling) and there was nothing they could do. I had also seen a sports medicine doctor, who had referred me to the latest ortho that I saw. When the ortho gave up, I tried calling the sports medicine doctor again, but I could only get through to an assistant who took a message and then called back with a reply. The reply was that I should follow-up with the ortho instead, and if he didn't have any ideas, then she didn't either.
I'll look into seeing an osteopath, and possibly a clinic. I'm also considering acupuncture, although my gut instinct is that it would make it worse - but I'm desperate enough to try anything, since the doctors haven't helped. I guess it's easy for them to say "we can't help you" when they are not the ones in pain every day. As long as they run a few tests and humor me for a few appointments, they can get paid whether or not they solve anything.
posted by LaurenIpsum at 10:17 AM on July 9, 2012
I'll look into seeing an osteopath, and possibly a clinic. I'm also considering acupuncture, although my gut instinct is that it would make it worse - but I'm desperate enough to try anything, since the doctors haven't helped. I guess it's easy for them to say "we can't help you" when they are not the ones in pain every day. As long as they run a few tests and humor me for a few appointments, they can get paid whether or not they solve anything.
posted by LaurenIpsum at 10:17 AM on July 9, 2012
I would also suggest getting an opinion from an expert/specialist, possibly a sports medicine doctor or an orthopod. I say this as somebody who had something misdiagnosed by three different generalist doctors. The orthopedic surgeon got it instantly, and he didn't even operate.
posted by Comrade_robot at 10:18 AM on July 9, 2012
posted by Comrade_robot at 10:18 AM on July 9, 2012
Definitely try a sports medicine specialist. And no, you are not impervious to MRIs. Spinal fluid issues don't necessarily show up in imaging.
posted by Sidhedevil at 10:26 AM on July 9, 2012
posted by Sidhedevil at 10:26 AM on July 9, 2012
The MRI "worked," in that if it hadn't produced a detailed picture of the target tissue, the tech would have known about it right away.
But the image is just an image. It doesn't actually come pre-labeled "This is what is causing your pain." For that, we rely upon the skills of radiologists, and the art of reading imaging studies is very much an art.
Further, the image is only an image of what it's an image of. If the problem is elsewhere, it's axiomatically not going to appear on the films that were taken. So just because the MRI reads as normal doesn't mean that you are.
So while it's really not conceivable that the MRI didn't "work," there are any number of explanations as to why you might still be having problems.
posted by valkyryn at 10:28 AM on July 9, 2012 [7 favorites]
But the image is just an image. It doesn't actually come pre-labeled "This is what is causing your pain." For that, we rely upon the skills of radiologists, and the art of reading imaging studies is very much an art.
Further, the image is only an image of what it's an image of. If the problem is elsewhere, it's axiomatically not going to appear on the films that were taken. So just because the MRI reads as normal doesn't mean that you are.
So while it's really not conceivable that the MRI didn't "work," there are any number of explanations as to why you might still be having problems.
posted by valkyryn at 10:28 AM on July 9, 2012 [7 favorites]
MRIs don't just not work without that being extremely obvious to the operator. What they do is detect a very very long list of possible ailments as well as, I'm sure, many that have not been described. So, now that you've had not one but TWO MRI scans, there is something that you do know. You don't have an ailment that would be detected by an MRI.
There is something that stands out to me with your bicycle issues, we really can't even begin to speculate about the other stuff. A trained bicycle mechanic at a shop should be able to get your bike to a point where it would stop causing you pain, with all of the various bits in a similar order to the way they were on your last bike at the very least.
A strange pain that has a reason to be there initially, with your unadjusted bike and all, but doesn't go away when the reason does, ie: when you got the bike professionally adjusted and then stopped biking altogether, indicates that the issue might be psychosomatic. This is not to say that it would then be not real or made up or faked in any way, but a real medical issue that is thankfully addressable with different tactics than you are using now. Has your leg been bothering you as you've read this thread? All of the symptoms you've described so far are ones that your mind can create totally de novo. Try thinking about your bicycle and moving your knee around for about two minutes, does it hurt in the same way?
The etiological model I'm suggesting is that you had initial leg symptoms with an external origin, the badly adjusted bike, and then your brain, expecting to encounter damage that wasn't necessarily coming, preemptively swelled your leg to encourage you not to use it and jump-start the healing process using your cycling as a trigger to start it. Then, once the pattern was established it expanded like these things sometimes do.
I have psychosomatic coughing fits, that are triggered by stress, mornings, and particularly the act of brushing my teeth. Its weird and really unwelcome, but I've managed to have a great deal of luck addressing it with meditation techniques and a trusted and understanding friend with a charismatic personality. A lot of people however have luck with this sort of thing using various types of home-brewed and professional woo, such as massage or acupuncture.
posted by Blasdelb at 10:52 AM on July 9, 2012 [1 favorite]
There is something that stands out to me with your bicycle issues, we really can't even begin to speculate about the other stuff. A trained bicycle mechanic at a shop should be able to get your bike to a point where it would stop causing you pain, with all of the various bits in a similar order to the way they were on your last bike at the very least.
A strange pain that has a reason to be there initially, with your unadjusted bike and all, but doesn't go away when the reason does, ie: when you got the bike professionally adjusted and then stopped biking altogether, indicates that the issue might be psychosomatic. This is not to say that it would then be not real or made up or faked in any way, but a real medical issue that is thankfully addressable with different tactics than you are using now. Has your leg been bothering you as you've read this thread? All of the symptoms you've described so far are ones that your mind can create totally de novo. Try thinking about your bicycle and moving your knee around for about two minutes, does it hurt in the same way?
The etiological model I'm suggesting is that you had initial leg symptoms with an external origin, the badly adjusted bike, and then your brain, expecting to encounter damage that wasn't necessarily coming, preemptively swelled your leg to encourage you not to use it and jump-start the healing process using your cycling as a trigger to start it. Then, once the pattern was established it expanded like these things sometimes do.
I have psychosomatic coughing fits, that are triggered by stress, mornings, and particularly the act of brushing my teeth. Its weird and really unwelcome, but I've managed to have a great deal of luck addressing it with meditation techniques and a trusted and understanding friend with a charismatic personality. A lot of people however have luck with this sort of thing using various types of home-brewed and professional woo, such as massage or acupuncture.
posted by Blasdelb at 10:52 AM on July 9, 2012 [1 favorite]
Were they able to see the lump/bump area on the MRI at all? Sometimes doctors will say the MRI was "normal" when they can't see any cause for the problem (your tendons are all intact, no broken bones or foreign bodies in there, etc. must be "normal"), when what they really mean is "normal except for that weird swollen spot that we already knew about from feeling around with our hands." If they literally couldn't even see the weird spot on the MRI, then maybe it's time to start wondering if you're worrying so much that your mind is exaggerating a normal bump.
If the lump did show up on the MRI, just without any useful info about what's causing it, then it's worth persisting with the doctors to find out what's going on. But only if it's actually causing you problems! A lump on your leg that is painful enough to prevent some day-to-day activities is worth looking into; a lump that doesn't really bother you but just seems weird, when MRI has ruled out anything that could eventually kill you -- that's not worth spending tons of money to investigate. Sometimes bodies are just weird.
If the spot did show up on the MRI, did the doctors give you any idea what is actually in the swollen area? Whether it's fluid or scar tissue or a weird fat deposit or something else, it might provide some kind of clue of how to get relief, even if they don't know what caused it.
If you do make an appointment to see another doctor, ask them to get your MRI records when you make the appointment, so the new doctor will have the results before your appointment. It helps if you have the phone number of whomever has the MRI records, so you can give it to the new office when you're making the new appointment. You might have to go to the old office and sign a release of information form, but it's worth it to get all the relevant info to your new doctor. You might even be able to get a copy of the MRI images on a CD for you to keep, so you can bring them to other doctors.
posted by vytae at 10:59 AM on July 9, 2012
If the lump did show up on the MRI, just without any useful info about what's causing it, then it's worth persisting with the doctors to find out what's going on. But only if it's actually causing you problems! A lump on your leg that is painful enough to prevent some day-to-day activities is worth looking into; a lump that doesn't really bother you but just seems weird, when MRI has ruled out anything that could eventually kill you -- that's not worth spending tons of money to investigate. Sometimes bodies are just weird.
If the spot did show up on the MRI, did the doctors give you any idea what is actually in the swollen area? Whether it's fluid or scar tissue or a weird fat deposit or something else, it might provide some kind of clue of how to get relief, even if they don't know what caused it.
If you do make an appointment to see another doctor, ask them to get your MRI records when you make the appointment, so the new doctor will have the results before your appointment. It helps if you have the phone number of whomever has the MRI records, so you can give it to the new office when you're making the new appointment. You might have to go to the old office and sign a release of information form, but it's worth it to get all the relevant info to your new doctor. You might even be able to get a copy of the MRI images on a CD for you to keep, so you can bring them to other doctors.
posted by vytae at 10:59 AM on July 9, 2012
Did you have a normal MRI, or an MRI with contrast? Because there are things that are problems that only show up when you have contrast, as I found out with my shoulder. However, I echo everyone else saying that you don't have an impervious body to MRI. However, I did find that with my shoulder problem, the orthopedists were useless, assuming I couldn't have done enough to tear my shoulder, but as soon as I went to a sports specialist, he knew exactly what I had torn and why they hadn't found it before and he found it on the first try. However, I had hurt myself doing something athletic and so it made sense for me to see such a person. It is somewhat unclear if your pain was caused by bike riding or merely coincident to it, but it can't hurt to try. Make sure you don't undersell your pain or let them push you away. If necessary, oversell it, it's often what I have had to do to get doctors to take me seriously unfortunately. You might also want to look into getting some physical therapy, because often if there is just a weird pain that won't go away, physical therapy can fix it, which it did for my weird knee pain the doctors couldn't find a reason for either.
posted by katers890 at 11:12 AM on July 9, 2012
posted by katers890 at 11:12 AM on July 9, 2012
Response by poster: Actually, I had already stopped bicycling when I noticed the lump. At that point I was still having overall leg pain from the bike, so I can't say for sure if I was feeling specific pain in that area.
I mentioned it to a physical therapist I was seeing at the time, and he attributed it to muscles being different sizes, despite the fact that I told him it hadn't previously been there. Later on, he massaged my leg and knee, and it felt okay at the time, so I thought that maybe it wasn't a problem. About an hour later, the area swelled up so much that it looked like I had cut a baseball in half and inserted it under my skin. Plus it was extremely painful. That's when I first noticed that this area seemed to be especially painful. I waited to see if it would get better, and eventually the overall leg pain stopped, but the swelling remained.
Has my leg been bothering me since I read this thread? Yes. There are days when it hurts almost the whole day. Other days it may only hurt a few times, but I don't think I've ever had a full day without it hurting. I'm on my third physical therapist, and on Saturday I did some of the "homework" exercises I was assigned, and it has been hurting most of the time since then. One thing that I didn't mention in the OP (because I didn't want it to be too long) is the fact that within the past few months, the swollen area is also "twitching" (feels like when your eyelid twitches). And right after doing some kind of physical activity, it can keep twitching for an hour or so. Also if I sit with "perpendicular" crossed legs (left ankle on right leg) I feel an immediate (although not excruciating) pain in that area, despite the fact that nothing is touching it.
Moving my feet as if I am bicycling doesn't make a difference. But when I initially rode my bike, I didn't have immediate pain. I was fine for the first week, then in the second week I started having this vague feeling of soreness in the thighs, but not so bad that I thought I should stop. I just figured I wasn't used to this particular bike. As I kept riding, the pain gradually increased, but it was never during or immediately after riding, it was usually the next day, just getting worse very gradually. I noticed the swelling after I had already stopped. Sometimes the swelling gets worse immediately after an activity, and sometimes it's not until hours later.
I guess I can't say with 100% certainty that it's not psychosomatic, but I can't think of any reason why my subconscious would imagine it. I loved bicycling, and would have gone back to riding because I kept my older bike - but any kind of activity causes it to swell and hurt. This whole thing has had a major negative impact on my life, and I would like nothing more than for it to go away. I can't do bicycling, or exercise, or going for a walk, all things that I loved. I almost wish I could get the leg amputated, because at least then it would stop hurting and I could learn to walk with a prostetic - rather than going the rest of my life avoiding physical activity.
posted by LaurenIpsum at 11:15 AM on July 9, 2012
I mentioned it to a physical therapist I was seeing at the time, and he attributed it to muscles being different sizes, despite the fact that I told him it hadn't previously been there. Later on, he massaged my leg and knee, and it felt okay at the time, so I thought that maybe it wasn't a problem. About an hour later, the area swelled up so much that it looked like I had cut a baseball in half and inserted it under my skin. Plus it was extremely painful. That's when I first noticed that this area seemed to be especially painful. I waited to see if it would get better, and eventually the overall leg pain stopped, but the swelling remained.
Has my leg been bothering me since I read this thread? Yes. There are days when it hurts almost the whole day. Other days it may only hurt a few times, but I don't think I've ever had a full day without it hurting. I'm on my third physical therapist, and on Saturday I did some of the "homework" exercises I was assigned, and it has been hurting most of the time since then. One thing that I didn't mention in the OP (because I didn't want it to be too long) is the fact that within the past few months, the swollen area is also "twitching" (feels like when your eyelid twitches). And right after doing some kind of physical activity, it can keep twitching for an hour or so. Also if I sit with "perpendicular" crossed legs (left ankle on right leg) I feel an immediate (although not excruciating) pain in that area, despite the fact that nothing is touching it.
Moving my feet as if I am bicycling doesn't make a difference. But when I initially rode my bike, I didn't have immediate pain. I was fine for the first week, then in the second week I started having this vague feeling of soreness in the thighs, but not so bad that I thought I should stop. I just figured I wasn't used to this particular bike. As I kept riding, the pain gradually increased, but it was never during or immediately after riding, it was usually the next day, just getting worse very gradually. I noticed the swelling after I had already stopped. Sometimes the swelling gets worse immediately after an activity, and sometimes it's not until hours later.
I guess I can't say with 100% certainty that it's not psychosomatic, but I can't think of any reason why my subconscious would imagine it. I loved bicycling, and would have gone back to riding because I kept my older bike - but any kind of activity causes it to swell and hurt. This whole thing has had a major negative impact on my life, and I would like nothing more than for it to go away. I can't do bicycling, or exercise, or going for a walk, all things that I loved. I almost wish I could get the leg amputated, because at least then it would stop hurting and I could learn to walk with a prostetic - rather than going the rest of my life avoiding physical activity.
posted by LaurenIpsum at 11:15 AM on July 9, 2012
Please see a sports medicine doc. This is the kind of thing they know how to treat, and they have physical therapists working with them who know how to treat this kind of thing as well.
posted by Sidhedevil at 11:23 AM on July 9, 2012
posted by Sidhedevil at 11:23 AM on July 9, 2012
First lecture on orthopaedics: symptom severity and visible changes on imaging are in no way correlated. Both in people who are in horrible pain, and people who have no symptoms, have (usually) an X-ray for something different which gives a picture of a horrendous joint. MRI/X-ray/CT works just fine, it's the human body that's bloody weird.
posted by Coobeastie at 11:59 AM on July 9, 2012
posted by Coobeastie at 11:59 AM on July 9, 2012
As an anecdotal response, I had a torn rotator cuff that did not show on MRI.
posted by lawhound at 2:55 PM on July 9, 2012
posted by lawhound at 2:55 PM on July 9, 2012
MRI sees things that are differentiated mostly by the amount of water they hold, it is considered to be great "soft tissue" differentiator as compared to x-rays (CT scans are x-ray) So for example, fat and muscle will look different on an MRI because of water content.
Sometimes, a radiologist will look at this water map, along with structures and patterns that are typical to muscle, organs, fat etc. to make a diagnosis. It is possible that your injury just looks too much like the uninjured structures in the leg, and there is nothing to differentiate it from the background. If the lump is clearly visible, I am surprised they didn't use ultrasound or even biopsy to figure things out. Is it a general inflammation, or very obvious lump, like for example a rock or bubble under the skin?
You might have just had bad luck with the doctors you have visited, so I would recommend talking to a few more.
posted by Yavsy at 3:56 PM on July 9, 2012
Sometimes, a radiologist will look at this water map, along with structures and patterns that are typical to muscle, organs, fat etc. to make a diagnosis. It is possible that your injury just looks too much like the uninjured structures in the leg, and there is nothing to differentiate it from the background. If the lump is clearly visible, I am surprised they didn't use ultrasound or even biopsy to figure things out. Is it a general inflammation, or very obvious lump, like for example a rock or bubble under the skin?
You might have just had bad luck with the doctors you have visited, so I would recommend talking to a few more.
posted by Yavsy at 3:56 PM on July 9, 2012
Response by poster: Is it a general inflammation, or very obvious lump, like for example a rock or bubble under the skin?
If I am standing up (or otherwise have my legs straight) it doesn't look like anything is there. If I bend my knee, then it becomes visible. On a good day (where I avoided physical activity), it just looks like the skin is a bit raised up. On a bad day (if I did physical activity recently, or even if I did it the day before) it can look bigger, as if there is an object under the skin. On a really bad day (like one time with my second physical therapist) it can be huge, where I can even see it when my leg is straight, and it looks like half a baseball is under the skin.
Based on everyone's suggestions, I now have a few appointments coming up. I'm now onto orthopedic doctor #4, and I have an appointment next week. He was recommended by a co-worker. I also have an appointment in August with a doctor who is both an orthopedic doctor and an osteopath - and one of the other doctors in that practice does acupuncture, so I will look at that too.
The place that gave me the vein test 2 weeks ago has actually referred me to a rheumatologist. I tried to make an appointment, but they wanted blood work done first. I did that last week, and when I called the doctor, they said he hadn't received the results. I will have to call the lab tomorrow and find out what happened, then hopefully I can make an appointment.
I also have an appointment with the physician's assistant of ortho #3 next week. I think she is just humoring me as she's already said they are out of ideas, but probably agreed to see me one more time because I got so whiny. (My husband will agree that I'm a very good whiner.) The one time I had previously seen her, I was having a "good day" with my leg, so the swelling, while still visible, probably didn't look "that bad" to her, so she thinks there's no problem. So she is insisting that I come early and walk on their treadmill to make it swell, so that she can see it better. I don't hold out much hope for this, as I think they've already given up, but I guess it wouldn't hurt to go one more time.
So, hopefully one of these visits will result in something. But still, if anyone has any suggestions for other possible tests or specialists, I'm all ears. (On the internet, would that be "all eyes"?)
posted by LaurenIpsum at 4:57 PM on July 9, 2012
If I am standing up (or otherwise have my legs straight) it doesn't look like anything is there. If I bend my knee, then it becomes visible. On a good day (where I avoided physical activity), it just looks like the skin is a bit raised up. On a bad day (if I did physical activity recently, or even if I did it the day before) it can look bigger, as if there is an object under the skin. On a really bad day (like one time with my second physical therapist) it can be huge, where I can even see it when my leg is straight, and it looks like half a baseball is under the skin.
Based on everyone's suggestions, I now have a few appointments coming up. I'm now onto orthopedic doctor #4, and I have an appointment next week. He was recommended by a co-worker. I also have an appointment in August with a doctor who is both an orthopedic doctor and an osteopath - and one of the other doctors in that practice does acupuncture, so I will look at that too.
The place that gave me the vein test 2 weeks ago has actually referred me to a rheumatologist. I tried to make an appointment, but they wanted blood work done first. I did that last week, and when I called the doctor, they said he hadn't received the results. I will have to call the lab tomorrow and find out what happened, then hopefully I can make an appointment.
I also have an appointment with the physician's assistant of ortho #3 next week. I think she is just humoring me as she's already said they are out of ideas, but probably agreed to see me one more time because I got so whiny. (My husband will agree that I'm a very good whiner.) The one time I had previously seen her, I was having a "good day" with my leg, so the swelling, while still visible, probably didn't look "that bad" to her, so she thinks there's no problem. So she is insisting that I come early and walk on their treadmill to make it swell, so that she can see it better. I don't hold out much hope for this, as I think they've already given up, but I guess it wouldn't hurt to go one more time.
So, hopefully one of these visits will result in something. But still, if anyone has any suggestions for other possible tests or specialists, I'm all ears. (On the internet, would that be "all eyes"?)
posted by LaurenIpsum at 4:57 PM on July 9, 2012
Getting a CSF leak from an amusement park ride is obviously pretty unusual, and judging by the puzzlement of your multiple doctors, so is the painful lump above your left knee, but there are conditions that I think could explain both simultaneously; namely, any of a number of connective tissue disorders giving rise to very flexible collagen, the most famous of which is Marfan's:
If you do indeed have "hyperflexible joints", I'd guess that the lump above your knee is actually an outpouching, or herniation of the membranes which contains the synovial fluid of your knee joint, and that this outpouching is now trapped under the ligaments and tendons of your knee, and swells and subsides according to how much synovial fluid is pumped into it at different times.
This outpouching would not be possible for a person with standard-issue collagen, and would require the hyperflexible and hyperextensible collagen of a Marfan's-like condition.
a painful swollen lump on the outer side of my left thigh, above the knee. I've had it since September 2011, and any kind of physical activity makes it worse.
...
I remembered that 2 years ago I came down with excruciating headaches that only went away when I laid down. I got 2 MRIs that showed nothing, and in the end, the doctor diagnosed it as a spinal fluid leak because there was no other explanation. He said it would eventually heal on its own, and it did.
This puts these two events in roughly the same time-frame, and I initially tried to construct a scenario in which hyperflexible collagen could lead to a CSF leak, and then the CSF leak would cause an outpouching, but I finally decided it was too convoluted to be a useful answer, yet I would still be interested in knowing whether the lump developed between the time of the amusement park ride and the period of rest which allowed the CSF leak to heal.
posted by jamjam at 4:43 PM on July 10, 2012
Spontaneous CSF leaks: Underlying disorder of connective tissue
...
Abstract
Of 58 consecutive patients with spontaneous CSF leaks, nine exhibited features of connective tissue disorder. One had Marfan’s syndrome. Five additional patients had hyperflexible joints, of whom four had arachnodactyly, four were tall and slender, two had hyperextensible skin, and one had a strong family history of abdominal aorta aneurysms. Retinal detachment at a young age was noted in two. One patient had bilateral carotid dissections. A dural weakness may predispose patients to spontaneous CSF leak.
If you do indeed have "hyperflexible joints", I'd guess that the lump above your knee is actually an outpouching, or herniation of the membranes which contains the synovial fluid of your knee joint, and that this outpouching is now trapped under the ligaments and tendons of your knee, and swells and subsides according to how much synovial fluid is pumped into it at different times.
This outpouching would not be possible for a person with standard-issue collagen, and would require the hyperflexible and hyperextensible collagen of a Marfan's-like condition.
a painful swollen lump on the outer side of my left thigh, above the knee. I've had it since September 2011, and any kind of physical activity makes it worse.
...
I remembered that 2 years ago I came down with excruciating headaches that only went away when I laid down. I got 2 MRIs that showed nothing, and in the end, the doctor diagnosed it as a spinal fluid leak because there was no other explanation. He said it would eventually heal on its own, and it did.
This puts these two events in roughly the same time-frame, and I initially tried to construct a scenario in which hyperflexible collagen could lead to a CSF leak, and then the CSF leak would cause an outpouching, but I finally decided it was too convoluted to be a useful answer, yet I would still be interested in knowing whether the lump developed between the time of the amusement park ride and the period of rest which allowed the CSF leak to heal.
posted by jamjam at 4:43 PM on July 10, 2012
Response by poster: Thanks for the suggestion, jamjam. The leg pain/lump didn't happen until about a year after the headache resolved. It happened in conjuntion with overall thigh pain due to a bike that apparently wasn't right for me. The allover pain eventually went away, but the sweeling/pain above the knee never did. So maybe I have a coonective tissue problem that was the underlying cause of both? I'll mention it at my next doctor appointment.
posted by LaurenIpsum at 8:37 AM on July 12, 2012
posted by LaurenIpsum at 8:37 AM on July 12, 2012
This thread is closed to new comments.
I ran 42 miles last week.
Sometimes, people read images wrong, or the images itself are wrong.
posted by roomthreeseventeen at 9:38 AM on July 9, 2012 [3 favorites]