Hello everyone

I have some questions about bone scans, and am wondering if someone can help me out. I am waiting to hear back from the doctor/nurse, but in the meantime, thought I'd check here.

I have peripheral neuropathy, but the pain management doctor I saw yesterday wants me to have a bone scan to check for RSD/CRPS. I don't think I have it, yet I have a lot of the symptoms. However, it has never spread like everyone here talks about happening. The blood vessels in my legs and feet don't correctly pump the blood back up once it gets down into those places, so I experience pooling down in my legs and they turn so dark purple that they are nearly black. I saw a vascular doctor (thinking it was a circulation problem) and he said that it was not, but just due to the neuropathy. He said to talk to my neurologist and see what could be done.

Lo and behold, my neurologist said that there is nothing he could do for the pooling and that it was just a normal part of a severe case of neuropathy. So I have now been bedridden for 4 months (since May) because anytime my feet are not elevated, the blood pools and causes intense pressure and pain.

My new pain management doctor said that he wants to do a bone scan to see if we can rule out RSD/CRPS. Either way, the treatments will be the same. I am most likely going to try a spinal cord stimulator.

My questions about the bone scan are this: What is the position that you are in when you have the scan done? He said that they administer an IV with a dye or something in it and then check for blood clots and pooling at specific intervals, up to 5 hours.

Well, when I lay flat, I don't experience any pooling at all. So if this is all done while laying flat in one position, I already know that the scan will not show the pooling, and there is no point in doing it. However, if it is done while sitting or standing, that is also a problem because between the pooling and the neuropathy, I cannot sit or stand with my legs down for 5 hours.

Can anyone explain to me how the bone scan was done if you have had this procedure done? As I said, I have a call in to the nurse or doctor... but I am getting curious and thought I'd see if anyone here can answer my questions.

Thanks, and hope everyone is having a good day.

Hello Sarah. I don't have RSD but I have had bone scans in the past, and they were all performed with me lying flat on their table.

When I first got there, they took a quick scan without any dye...... then injected the dye and did another very quick set of films.

I was then sent away and told to come back 3 hours later. This was to give the bones sufficient time to absorb all the dye.

This final scan was much slower than the others, but all the films were taken with me lying flat on my back.

With the concerns that you have, why don't you ask your doctor if you could have some erect films taken. Most tables in the XRays dept will tilt (I don't know about this scanner though), and some will even allow a patient to stand, but I doubt the Radiographer would change from their norm without a doctor's permission.

.... just a thought.

Yes, I plan to. After I asked about the position, I was going to ask if either we should just forget the bone scan and the possibility of having RSD, or if there is another way it can be done. If I am laying flat, the results simply will come out as normal with no pooling--which means a lot of money and time wasted for nothing. Thanks for answering my question! =)

I am thoroughly confused.

When I saw my new pain management doctor, he said that even though it is called a bone scan (and looks at bones), he wanted me to have it done to check for RSD and pooling/clotting of the blood. That's why I was asking about the position you are in during the test, as I only have pooling when I am sitting or standing.

The doctor now says that it has nothing to do with blood, only bones and checking for RSD. I know I'm not crazy because my mom heard him say the same thing (about the bone scan checking the blood).

So I will be going ahead with the bone scan even though it is all done laying down. I am just a bit confused as to why he said two totally different things... but maybe he got confused... or maybe we got confused. Who knows. The nurse is trying to get it pre-approved by my insurance so that it can be scheduled. We'll see how soon I can get it done. I can't move forward with either the pain pump or the spinal cord stimulator until this is complete, so I am anxious.

Well, I had the bone scan a week ago, and got the results today. It's interesting though--Thursday was the scan and Saturday or Sunday I figured out on my own that I didn't have RSD. We suspected it because of the pooling in my legs, turning my legs so dark purple that they were nearly black. Well I figured out over the weekend, that it was not RSD, but POTS causing the pooling. So I was not at all surprised when the results came back today and I do -not- have RSD! Just wanted to share my joy in knowing that... I have so many other problems, I really didn't need to add one more to the list!

Sarah Mae...

I want to share your joy with you in that you are not part of our RSD partcipants... It is such a dreadful disease ..and I have always said I need to be the one to have it rather than anyone else cuz I know (as my friends here) how mean and painful it is.... its a life long battle and I would never want anyone else to suffer with it.... It is however nice to see you here..I wish you much luck with your diagnosis...you always have us!!!

Hugz, Kathy

Thanks, Kathy! I have been wondering the last few days how you've been doing.. haven't seen you around, but I don't always check every forum, either.
While I am very glad to not have RSD, I don't want to give anyone the impression that I am pain free. As you can see by my signature, I have my own host of issues.. so I am thankful to not have to add one more. Now that I know it isn't RSD, I won't be spending as much time on this forum, but am around on other boards, specifically the peripheral neuropathy and SCS forums. I will stop in though and see how people here are doing, as I've met some wonderful people!

you are prompt..thank you and again.. nice to visit with you..Yes, this is pretty much my 'home' forum as RSD is my 'bag'... also my SCS... Such wonderful family we have here..We look out for eachother and care deeply.. not to mention the wealth of knowledge and prayers shared ..Having a terribly illness wheather RSD ir any other.. sure to know we have wonderful supportive friends... I di note your dialog nad I am terribly sorry for your health concerns otherwise... Please hang with us here also..It is always nice to have your company!! I will pray for you in that you do well inspite of your other concerns... Thanks for chatting with me..

Hugz, Kathy