Reflex Sympathetic Dystrophy Support Group

I think if hte blocks are not working why keep doing them?

But I think most doctors do not know how to treat CRPS and for some reason they do not want to try non-invasive treatments. I asked about a few and all my doctor had to say was without hesitation "those do not work".

I had a friend that is a nurse where I work and she sent an e-mail to our Medical Director to get his opinion on CRPS. His response was there really is no good treatment. Not that is not to say there are not treatments out there but what may work for one may not work for others.

I was asking my doc about HBOT, CALMAR. I have heard some good things about ketamine BUT i have also heard from others that it did not work for them.

in my opinion doctors like to poke and prod at us and do not know what else to do. In my case when I got injections it made my crps worse and spread. I myself am staying away from that.

Hi, The last posts really made by think a lot about the treatments and the doctor. The blocks are very lucrative for the doctor I am sure. The doctor does them in the surgery center I go to two days a week and I was going two days a week sometimes and once a week others with some breaks built in.

I did 18 blocks because the doctor told me and my mom who went to my original appt where I was diagnosed that the only hope of remission was to act quickly and try and put it in remission through 3 series of 6 blocks blocks followed by PT. I joke that I feel like a part of a herd when I get the blocks. There is a patient scheduled every 15 minutes and we are all lined up in the beds waiting. The doctor is a partial owner of the surgery center also so he makes money off of the block itself he does and also from the facility. I am sure it's good money on his end. The doctor says the blocks are necessary because I can't participate in PT without them and if I don't do PT and move the leg the CRPS gets worse. Use it or lose it is what he says.

I have asked about Ketamine infusions but my doctor said they don't work-he kind of rolled his eyes-my pain dr. is an anestheseologist so that's how he treats. The blocks help for the day to get through PT but they don't last any longer than the day they are done even though they worked longer in the beginning.

I am scared to not cooperate and be fired as a patient whether it be the SCS or the blocks. I do think if I was to not follow one of his treatments he says are needed that he will fire me for not cooperating. I told the doctor yesterday I really didn't want to do another series of 6 but felt pressured. There is one other pain mgmt doctor in my area so I think I will try to get a second opinion but you are so right I have to be so clear that I am not there for meds just for an opinion about what can be done for treatment.

It's hard to stand up for myself with the doctor because I feel like I am literally at the mercy of the doctor and I am worried about being fired. It stated very clearly in the pain/opiate contract that not following his treatments are grounds for terminating the patient from his practice. Before pain mgmt. I had never heard of doctor's firing patients.

Think I will call my primary today and ask very carefully for a referral for consult only-no meds at all-to the other pain dr in the area.

18 blocks is getting to be a dangerous number! Everytime you get one it leaves scar tissue. I now have arachnoiditis because of all the blocks/epidurals I had. None of them helped. The last one I had landed me in the hospital for over a week because the doctor punctured the lining of my spinal cord and hit a nerve. That was in April and I still have problems with it.

I have NEVER heard of 3 sets of 6, that is way too many unless they are working very well. I would think very long and hard before getting another one! I believe the standard is, at least for the doctors I have been to, they do one set of 3, sometimes 2 sets of 3, If those don't work there isn't cause for any more. I know you are afraid of getting "fired" but that doctor is putting you at risk. The blocks are a very lucrative business for those doctors, a lot of money for a few minutes of work. I had 6 of them, and I can't ever have any more. THey didn't help a lick anyway! I now have a wonderful doctor and I am in the process of getting Ketamine infusions(I got my first day of boosters today.) Don't let your doctor tell you stuff hasn't worked, if he doesn't know anything about it. I encourage to do your research and look into some new doctors, one that will have YOUR best interest in mind, not his wallet.

I agree with snoopyemt,

And maybe I believe she is who I had heard of being SO sick after a LSB and also the danger of that much scar tissue is a factor I hadn't thought of. I think there are a bit different protocols for how many blocks are done, and like I think I said I was suppose to have one a week UP UNTIL TEN but that was all, and to stop doing them at whatever point we could tell that I was not getting significant longer times of pain relief with each block done. I've never heard of 18, but could see it being OK if you were getting SO much better that it seemed to almost have you in remission! But, to have a few hours of relief only, my doctor said that he would NOT do them after the third one since we didn't get better results, and I had better results than you did. Is there any way for you to do the physical therapy without doing a block first? I can understand him wanting you to keep parts of you body both moving and working well. That sounds like a reasonable goal, but I don't know that a surgical procedure (block) is appropriate anymore for you in this situation and feel more firmly than last night that you need to get a second opinion- and if you like her, fire the one you have now But, before you fire anyone, take a lot of questions to ask about how she would procede and what would she do if you never feel comfortable with the idea of a spinal cord stimulator- also what about trying ketamine infusions and her thinking about that- and then let her do any talking about medications. She will want to be in charge of that because of people come in asking for a specific medication they get the feeling that you are a problem with meds. So answer any questions truly about your pain levels, your hard time working your trouble sleeping and anything else you are having trouble with doing. If your mom can go, take her, or if a respectiable other person can go, take them. I'm going to pray that you find a better doctor who will listen and not threaten you. But, still if you do you will likely sign a pain contract and that's fine. They kind of have to make rules and put them out there because of all the times they've been lied to. Don't let it bother you. I hope this works out well for you!

gail

HI.... I am sorry .... but HOw does having 18 blocks make it any more dangerous than 3 blocks except the obvious ...infection...... I don't understand how you are saying that it is more dangerous to have this many....... please fill me in... I hate to say this with this thought going around,, I have had that many over time.... and NO I don't thing scare tissue enters into the subject really, but it might.... I think the ones that I had at the end did more good, than the ones I had at the first.....

Craig

I don't know about the scar tissue in the back where they do the left lumbar block. I do know after 18 Iv's, plus other Iv's for the other surgeries this past year, I have a "knot" in my arm or vein I guess where they would put the IV most times. So they can't use that spot anymore for IV's because of the knot. They just use the other veins now. Not sure if that is scar tissue or not but I have not heard about the Dr saying he sees any scar tissue on the machine when he does the actual block. The rationale is that I can't do enough in PT without a block to justify me going without a block first. The block lasts for the day I get it so enough time to get through PT. Lasted longer than one day at first so not sure why it isn't so effective anymore.

I was told that the 18 blocks is standard treatment to try and put CRPS into remission. That is was the only thing that had a chance to have remission so I hoped maybe there would be remission but it didn't happen. Not sure if I want to proceed with the rest of the blocks anymore after all of the posts. I am now very curious if there are any potential damages to more blocks like scar tissue forming.

Just had to say also I am going to see if I can obtain a second opinion but am worried about being perceived as pain seeking so will have to be so careful about making clear just there for opinion about treatments and not any meds. I really want to find out about the ketamine infusions. They sound promising.

Also I don't fell threatened by my doctor. I don't think I can say no to how he wants to treat but I also haven't tried to say no I will not do it when I don't want to because I am worried and don't want to lose my pain doctor for not cooperating. Hard to say no when you can be fired. I met a lady who didn't want to take the specific pain meds the dr I have now prescribed and so she was fired as a patient with two weeks worth of pain meds and it took her three months to get an appt with the other pain dr in the area. I literally can't walk without the pain meds so the idea of losing my meds and being back exclusively to the walker/crutches/wheelchair scares me enough to comply with the treatment even when I would rather do something different. Too important for me to keep being able to stand walking on the leg. Plus if I can't walk maybe I will make the CRPS worse because I'm not using the leg.

Very grateful for the last few posts from members. Thanks for all the great info and views. Really helping me and hopefully others in the same boat as me. I have a few weeks before the next series of blocks starts while the insurance approves them so have some time to try for a second opinion.

HI.... I don't know that 18 blocks is standard, but what is most important here is that you are comfortable with your doctor and your treatment. YOU have heard the other side of this story..... so now you can look into it and research it... so that you can see for yourself if there is another way to do things... But as far as I see it, As long as you trust him, that is all that matters......I know there are people out there that don't agree with the way my PMD has treated me and my back problems, but I think the world of this doctor, and trust him completely. I have researched every treatment he has done and none are outside the norm. so I understand how you feel..... I hope you the best..... And please keep us informed on it goes....

Craig

Post edited by: Fletch2ya, at: 07/20/2012 08:36 AM

Hi -

I've not heard of as many as 18 blocks, but that doesn't mean that I think it's a bad idea. These are lumbar sympathetic blocks, right? If so, they're just getting an injection in an unusual place with a long needle that's not as thick as the needle used when you donate blood.

Generally, the only time scar tissue develops after injections is when they're done many times/day, using the same place each time - as heroin and other injectable drug addicts do.

RSD is such a weird, unpredictable illness - none of us seem to have the very same experiences, which is why we find ourselves undergoing such varied treatments. What works like a charm for one person might have no effect or even cause deterioration for someone else. That's why it's so important here not to generalize what works for us as something that would work for everyone!

I endorse what Craig said - if you trust your PMD, and are certain that s/he has your best interests at heart and is being 100% honest with you, I'd follow their suggestions. My own PMP has almost 35 years treating RSD and other types of chronic pain, and I have never asked her a medical question - in any field - that she hasn't instantly known the answer to. September will be my 10th anniversary with her, and I consider myself very fortunate.

Howard

Crpspatient, I think my personal experiences have shaped my opinions and thoughts and they are not neccesarily based on actual knowledge, so I probably can get a bit emotional about certain topics and need to learn to remain calm. I've felt very threatened by three pain management doctors in my 6 years of RSD/CRPS and very much that if I didn't do exactly every tiny thing they told me to do then I would be without treatment and I totally understand how that would frighten you!

I'm absolutely dependent upon my pain medications, which is not addicted, but I do feel that I need them in order to maintain the ability to function at all right now as well as the amount of suffering they at least help with. That makes the idea of being fired by my doctor VERY scary. It can be hard to get in to see another pain doctor and there could come a span of time with no medications. That terrifies me. I can't imagine the pain I would be in not to mention how sick I would be.

I was actually fired by my current pain doctor and it was a misunderstanding combined with a panic attack (me) and once I was over the panic attack and he agreed to see me one more time, it was all worked out and that was about 3 years ago. But, I don't have the option not to take the UA when I'm told it's time or anything else in my contract with him and I see that as somewhat reasonable with the pressure he is under yet financially it's a burden for me.

What I'm trying to say is that I still feel like if you DO have any doubts about the current treatment plan, doubts that are really bothering you, I think a second opinion could help you determine whether you're doing the right thing or even with the right doctor. I went to a second opinion when I was trying to determine if I really DID have RSD, and the guy was insane! He yelled at me and seemed like an egomaniac. I'm not exaggerating. I was so frightened by him that coming back to simply being uncomfortable with the pain doctor I have was a relief! I even told my pain doctor that I had gone for that appointment and he wanted to know all about it and was amused at how it had gone. Anyway, crpspatient, you will likely just need to search your heart and do what you feel is right for you right now and take what someone like me says as an opinion but not neccesarily the best answer for you. And, you can always keep the idea of a second opinion in mind in case things don't progress in a way you feel good about.

Let us know what you do... I hope whatever you do works out well for you!

gail

Check out what the side effects are from Ketamine.