Femoral Cyst

[bekens]

I'm a 23 year old female with Ehlers Danlos type 3, hypermobility type.

I've had increasing hip and lower back pain for about 4 weeks. I finally got in to see my new Ortho this morning. I had attributed my pain to my EDS and he seemed to agree with me. My IT Band snaps and he thought was probably a good part of my issue. But since I've felt a sort of popping/grinding where my femoral head sits he went ahead and ordered an MRI to make sure there was no soft tissue damage before starting me on physical therapy.

The MRI came back within 30 minutes and I got a phone call. The doc said it "looks like" a cyst on the femoral neck and that I'm not allowed to stand/walk/anything weight bearing. He ordered me a pair of fore-arm crutches since my shoulders are bad from the EDS and I can't use normal crutches. I have a CT Scan and a Bone Scan on Monday.

I can't seem to find any information about possible causes or treatments for a cyst in the location mine is in. I'm more than a little nervous about the whole thing.

Because of my EDS being put through a bunch of tests and seeing all kinds of Docs is nothing new for me. But the lack of available information on this has me spinning my wheels a bit. I just what to know what the best and worst case scenarios would be so I know what to be prepared for once I get these tests finished up.

Thanks a bunch!
~Becka

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[gcoe]

Hi Becka

There are different types of bone cysts so the Ortho should inform you what type:

Unicameral simple) bone cysts
anneurysmal bone cysts
traumatic bone cysts

Did he/she say what type it was? If it is a simple bone cyst have a look at this site:

Your Orthopaedic Connection: Unicameral (Simple) Bone Cyst

So this type of cyst has nothing to do with cancer, is benign but doesn't seem to be very well understood (eg why they occur)

Why the non weight bearing? The ortho maybe concerned enough about the cyst, potentially collapsing, hence why the non weight bearing (although I don't know that). However I think it would pay to go and find out from the ortho exactly what the thinking is. To have you off your leg is a major issue and as you are worried I think it would pay you to go back with a list of questions you want answering. For example:

What exactly have you got ie is it a unicameral bone cyst.
As it is causing pain is there a risk of it collapsing causing a pathological fracture
How sure is that it couldn't be something else - should it be biopsied?
What is the rest supposed to do? How long will this go on and when will you know that it has worked?
why not surgery at this stage. If surgery is warranted what would it involve?

You are entitled to know more.

I'll have a look on a database at work if there is any more detailed info if you like.

In the mean time keeping fit would be good! your PT should be able to help you with this - aqua for example.

[bekens]

Thank you so much for the response!!

I'm not even sure if it's a bone cyst. They didn't tell me much when they called about my MRI results. Just that it looked like I have a cyst on my femoral neck and need to get crutches and have more tests run.

So we haven't discussed any of the possibilities/treatment options yet. I don't have another appointment until after I get the CT Scan and Bone Scan done on Monday. Hopefully those results will be in quickly because not knowing what it is has me a little freaked out. :P

My mom talked to an Orthopedic surgeon where she works. He said that hopefully it ISN'T a bone cyst, because in that case all they would have to do is use imaging and go in to aspirate it. But that if it is a bone cyst I'll probably be looking at surgery.

Should I call my ortho and ask if they know which type it is? Or would they not know from the x-ray & MRI and need the CT/Bone Scan to answer that?

Thanks again!

[gcoe]

Hi Becka

It is a difficult and worrying time for you and I understand your concerns which are quite valid. Getting it diagnosed may not be that straight forward so further imaging with a bone scan and CT may shed more light on the diagnosis. I really am not an expert on the diagnosis - it really is the ortho's job. Perhaps the Dr just isn't that sure yet, or maybe he just wants to confirm his diagnosis before giving you all the facts.

I presume from the MRI that they can get a look at the architecture of the lesion and gives some likelihood whether or not it is a cyst. I understand that cysts are often quite distinctive. The CT may be another way of getting the image. The bone scan looks at uptake of a radioactive marker. The greater the uptake indicates an area of higher metabolism - as you might see with a bone cancer or an inflammatory process. So the bone scan may be used just to rule out the chance of something more sinister like cancer. There could be other reasons for the tests that I am not aware of. Presumably you have or will also have other things such as blood tests.

It could be he just isn't that sure yet. Are you going to have the imaging done soon? If you mean this Monday then you might as well wait till the results are in. However if you are having to wait then I would get in contact. You have a right to know as much as can be known at this stage.

It is good you have gotten onto it. It is always better to know.