Update on Zachary
 

I am so confused. We went to yet another pain management doctor today and he said that Zachary DIDN'T have RSD because of the tests that he did (pricking his foot with a toothpick, touching it with a q-tip, and general touching) was without his jumping. I am happy about that but yet still alarmed. I mean that is good news but that is not why we went to see him for.
We went to see PM because Zachary's podiatrist that the surgery wants him to have pain blocker injections. Again, more good news because now he doesn't need them. Yet I am nervous about what the Podiatrist is going to think since it's been 4 months and Zachary is barely walking. We have seen 2 PM doctor's now and Zachary has been in physical therapy but hasn't returned to physical therapy since everything is on hold since the PM doctor's.
Ugggggg I am so confused and frustrated. I just want Zachary to get better.
Too many doctor's and too many conflicting outcomings is what this all boils down to.:confused:

One test does not determine whether one has RSD or not. I can't stress that enough, and the doctor should know this. Unfortunately, it seems, it's several tests over a span of time. It took my wife 2 years just to hear a doctor mutter the word RSD.

You are so correct on that......there are so many factors in getting diagnosed with this horrible disease. I have had Crps for nearly 2 years, 9 months of the 2 years without even knowing. I couldn't figure out why it seemed as though my foot wanted to explode from swelling and across my shoulders it felt as if someone was holding a torch to my back and just running it back and forth. I had severe nerve damage and massive scar tissue from several surgeries on my right foot, then to explain my shoulder and pain , nerve damage to my right shoulder and and injury to my hand. None of this made any sense to me, THEN....my oldest daughter was in a severe car accident on 2/20/11 and suffered severe blunt force trauma to her brain among other injuries, but on 3/5/11 I had to make the decision of turning off the life support and 12 hours later she past away on 3/6/11. She was 28 years old, my first born and the mother to my only grandchild. My life hasn't been the same. I do have a son and daughter she left behind and the chronic depression, stress and inability to cope with the loss of my beautiful Jessie. I began to fell agonizing pain all over my body unlike anything I have ever felt in my life. It started in my right foot where I had my surgery. So I went to the doctor that treated me, he objects me with steriods, EVERY SINGLE TIME! This was when I was living in the sack area so for over 9 months, I'm dealing with this pain, purple colored foot, pain omg the pain was horrible. When I felt emotionally stable enough to leave my grand baby and after losing everything I had, I moved to Austin with my sister and immediately went to my orthodox specialist, he took one look at my foot and said there's nothing I can do, this being 11/14/12, and sent me to APA. Well I have been going there ever since. Being told the old injuries and loss of my daughter triggered the onset of the CRPS and because the other Dr didn't diagnose or catch it, it was past the point of getting control of it. It is now throughout my entire body. J am on some of the strongest pain meds and have had 9 SLBs to which not one has helped,. The last one has made my entire right are nearly crippled and my right foot, back all on fire. Geezzz sorry I was just going to try to answer a question and look at me you all know my horrible experience of my life for the last couple of years. Sorry.........

This would make me very nervous. RSD is a clinical diagnosis that can't really be ruled out of in from any one test. You don't need to have ALL of the symptoms of RSD to HAVE RSD...it's a very complicated thing and not well understood by many people/doctors.

Don't get me wrong...I would be absolutely THRILLED if Zachary doesn't have RSD...but the doctor's reasoning would make me very skeptical and nervous. Did he have any other ideas about what IS wrong Zachary? That is typically my first question when a doctor questions whether or not I have RSD. They typically don't and have no explanation for all the symptoms I have (all of which have been witnessed by doctors at one point or another). I would hate to see Zachary go through with the surgery and then experience spread or a worsening of the condition because of it.

My suggestion would be to see another PM specialist for another opinion. Unfortunately, these things take time. Sometimes it's hard to get a diagnosis of RSD in one visit because, as I said, it is a clinical diagnosis. If you are "lucky" and present with many of the physical symptoms at the time of the visit then perhaps you will get the diagnosis. But I know that for me, unless I am in a really bad flare, all my symptoms are not always visible at the same time. So for a doctor who doesn't know you from a stranger on the street, all they have is your word for it that you experience these symptoms.

I hope that he does not have RSD and that this PM is right...but it's a big risk to take (in my opinion) to go ahead with surgery when another doctor suspects RSD. If you get a second opinion, I would make sure you go into the appointment ready with some questions so that you don't leave the appointment confused about the situation. Things like:

What is the diagnosis? Why do you believe this?

If it is not RSD, then what IS it?

What would you suggest the treatment plan be?

If there is a CHANCE this is RSD, should be hold off on the surgery or get blocks prior to the surgery to minimize the chance of spread?

That's not really a complete list or anything but I would be ready and armed with questions (preferably written down on a piece of paper that you take WITH you to the appointment so you don't forget anything). I would make sure it is a list of things you WISH you had asked this last doctor. I know from experience how frustrating it is to leave an appointment and think of all the things you should have asked but didn't. This is why I write down my questions during the week BEFORE the visit and add to it as I think of things. Then at the appointment I have it in my hands so I don't forget anything.

I'm very sorry that you are going through all of this and I hope that you find some answers soon.

Zachary had surgery on December 19,2011. The podiatrist that did the surgery was afraid that he would get RSD from the get go but never really mentioned it until after he got all the casts off, he had like 5 total. Then once he said he had RSD he blamed Zachary instead of the massive surgery that he had done. We have been to 2 PM's now (Pain Management doctor's). It is sad that noone can agree with what the treatment should be