[Caraleigh]

Originally Posted by Littlepaw

Hi Caraleigh,

You must be so frustrated. There is no need to apologize for that. Your concerns are valid. As a mother, I too would be questioning sending him back into activity without answers I felt confident about.

How many chronic pain patients are 9 years old? This doesn't make any sense to me. He hasn't had a pain syndrome so long that he is completely centralized in his pain interpretation. Be sure that isn't a label they are giving because they can't figure out what is going on.

I would want to know what kind of testing they are considering, what they expect it to show and if it is at all invasive.

I don't remember whether your son's doctors were at a major educational center or not. Travel if you need to. Get second opinions. Take the actual MRI disc and all other imaging with you, not just the reports. Be relentless if it is called for. Doctors have different focuses and skill levels. My first orthopedist didn't think anything was wrong with me. Nine months of appointments and searching led me to an entirely different specialty and finally some helpful answers and treatment. Unfortunately it can take a lot of persistence to get what you need sometimes.

I am so sorry your son and family are going through this. Do not give up until you are ready and feel that your concerns have been adequately addressed.

Keep at it Mom, we support you. You gotta take care of that cub!


Oh question on the popping...I am not sure what you mean by that. I used to feel like I was walking on bubble wrap due to swelling.
There is also something called crepitus where there is air build up in joints that have cartilage damage...it causes creaky, popping sensations.
I think many of us can identify with burning, freezing, gnawing and throbbing pains.

Thank you, this actually helped a lot. I am going to get some second opinions for sure. And that's exactly what they seem to be doing. Just labeling it just as a "chronic pain disorder". The popping in his foot is painful and normally has throbbing with it. I just want to try to get to the bottom of it. its not like the bone scan showed nothing... there was something there. they just keep saying it wasn't definitive enough. Very aggregating!

[Littlepaw]

Caraleigh,

Bone scans show different results depending on how long a person has had CRPS. My understanding is the further out it goes the less likely it is that a bone scan will show positive. Just to muddy the waters, Keep in mind that bone scans also show things other than CRPS and findings such as bone marrow edema on MRI can be CRPS or can be something else. No test is definitive. CRPS is a clinical diagnosis of exclusion, reached when everything else has been ruled out.

IMHO, the most important thing about testing and imaging is making sure that there is no other reason for the pain. Nerves are easily aggravated and compressed. Mechanical issues with the foot can lead to many nervy symptoms simply through swelling. And CRPS can be caused by a treatable pain contributor. Finding if there is one can be a game changer as far as being able to achieve remission.

I hope you are able to find what you need quickly. Aim high. It is absolutely worth it.

[PurpleFoot721]

Caraleigh;

Littlepaw has done a much better job of answering some of the concerns than I would be able to. As far as the popping, it reminds me of one of the things that my ankle was doing before I went in for surgery back in January. There was so little cartilage left that quite often, the bones would rub against each other and make a popping feel as they slipped off the remaining cartilage and hit bone to bone, very much as Littlepaw said.

I do hope that you are able to find the answers and treatment that your son deserves. So far, the neurologist sounds as if he really does not know exactly what is going on, so he is grasping at straws trying to come up with a different diagnosis first, even though other doctors that you have been to have already ruled them out and concluded that it is CRPS.

If I were a mom, and my son was having a constant problem with pain, I would be pushing the doctor to consider CRPS and do what he can to treat it while it is still early to get the best chance of remission, since other doctors have already made that diagnosis. From there, go ahead and search to see if it is something else. If he won't do that, go somewhere else. I would do what is in the best interest of treating my son's problems, which it sounds as if you are doing that.

I wish you the best at finding the answers, and treatment that your son needs.