Sunday, September 2, 2012
AH YES, WHAT A TITLE !
I know, we just did this one didn't we? Seems like it but looking back it has been a while. I guess it is because we talk about it a lot on the RSDHope Teen Corner and I get asked the question a lot by patients and loved ones who email us through our Contact US form at American RSDHope.
It is a very important question for CRPS patients
But it seems there are too many Drs out there who still haven't gotten the message. One Doctor who hasn't gotten the message is far too many in my mind.
Now before I start getting cards and letters, yes, I know. There are tons of wonderful Anesthesiologists who know exactly what they are doing when it comes to sympathetic nerve blocks (I always wanted to say that, like Jay Leno, the cards and letters thing, not the Anesthesiologists thing) . I realize that. But you would be shocked if I told you how often we hear from patients who are not even counseled about blocks, not even told they should consider them until it is too late.
BLOCKS BLOCKS BLOCKS!!!!!!
Ok, here it is.
READ THE ARTICLE ON BLOCKS!
Read the article that discusses CAN THERE BE PROBLEMS WITH A BLOCK?, I have to add a new part after reading a new email I got today.
Also read the article that is at the bottom of that page SMP AND IMP, WHAT IS THE DIFFERENCE? This is very very important. Did I say it was important? Let me say that again. It is very, very important!
It is also key to understanding the following questions we get asked a lot.
1) Is there a certain time period for getting sympathetic nerve blocks?
In other words, is there a point in time after my injury, when my CRPS has started, that the sympathetic blocks will most likely no longer work? Or a time when they will be more helpful than another time? If so, what is it? Is it measured in weeks? Months?
Answer - yes and no. A time limit? Not really. You can get nerve blocks anytime and for a number of different reasons. They can help pain patients, and others, for a wide variety of reasons. We are only going to be addressing CRPS patients in this article and mainly focusing on the importance of early treatment with sympathetic nerve blocks.
So, is there a time when those sympathetic nerve blocks will be most effective? That is probably a better way to word the question.
Yes. The accepted wisdom is that if a patient is treated with sympathetic nerve blocks within the first 6-9 months they stand the best chance of putting the disease into remission, 12 months at the outside. This is the prime-time for treatment, the best window for attacking this disease. The younger the patient the better. That means post-onset of symptoms, not since diagnosis obviously. This can sometimes be a problem since it is not always easy to pinpoint when exactly the symptoms began since the symptoms of CRPS can sometimes be quite bizarre.
There are exceptions of course, like with everything else associated with this disease, or to put it another way, there are no absolutes, so blocks are tried long after that 12 month window.
Now, having said that, does that mean that Drs do not give CRPS patients sympathetic nerve blocks after the 12 month window? No. of course not. Because there is always a chance they will still work. Maybe a little, maybe a lot. it is a difficult disease to pin down and pin down absolutely. We have to work in generalizations. It is why it can be a very frustrating disease for Drs as well as patients.
It might help one patient in stage one, but not in stage two, you might show certain symptoms in stage two but not stage three, and vice versa. This is why WC and SSD cases are frustrating. Your symptoms may/may not be visible or as visible depending on the stage you are in or even the time of day, time of month, time of year, and a million other factors. Something to take into consideration when you are making your Drs appointments, try to make them at different times of day each time you go, that way if you are one of those patients whose symptoms vary as the day goes along, like most of us, the Dr gets to see that.
2) Is there a typical number of sympathetic nerve blocks that are given?
Do they usually just give one, or three? Should I stop if the first one doesn't work?
Answer - Usually they are given in a series of one to three, or three to five, depending on the Doctor or Clinic.
However, we still get a number of patients write to us who say their Dr has given them twenty or more sympathetic blocks, yet they still have a lot of pain. WHAT???!!! Is always my response. HUH????? How many?
I remember going to a conference for CRPS patients, actually it was still called RSD back then in 1995, and I was listening to Dr Hooshang Hooshmand speak. He was taking questions from the audience. I don't know how many of you got to hear him speak but he was a hoot and a holler. (for you city folk that means he was funny) He was always aghast at the incompetence of other Drs. I remember he had just finished talking about sympathetic nerve blocks and that after three blocks if they haven't worked by then, the chances of them helping you was pretty slim and after 12 months it was pretty much nil especially if the first three didn't work.
One patient raised her hand and said "My Dr says you can keep giving the blocks as long as you want. I have gotten over 100 nerve blocks in the last three years." She had this smug little look on her face like she had proven Dr Hooshmand wrong. He just stared at her for a few minutes. You could have heard a pin drop. Everyone was looking back and forth between her and him. She was sitting in a wheelchair near the front.
He finally said "When did he tell you he thought they might start working? 125, 150, 175 blocks?"
She just sat there and looked at him, didn't know how to respond. No one said anything, not sure if he was serious or making a joke. I thought it was a hilarious response. But now, having heard quite a few other patients tell me their Dr has given them over 100 nerve blocks, I wonder if this is the same guy!
c'mon people! Wake up! I feel we need to make a poster for this possibility; "Don't let this happen to you!" and have a person with CRPS sitting in a clinic room lying on their stomach, beside a fluoroscope and on the table are 100 used syringes.
Fortunately it isn't as common as it used to be but there are still a few Drs out there who seem to do far too many sympathetic nerve blocks, in the twenties and above , when they are not helping at all! If they were helping the patient, that would be something else entirely, and if you are getting some from your Dr., a type of block and they are helping we certainly are not suggesting that you stop. Maybe it is a different type and/or for a different medical issue. There are many CRPS patients who develop other medical problems along the way; fibromyalgia or CFIDS for example. Many have also gotten into MVA's initially and developed CRPS as a result so they have significant injuries from that accident and may have back issues and they receive ongoing blocks of one type or another that help them.
Hey, if you get blocks and are in less pain, fantastic.
Listen, if the first ten aren't working, what makes you think the second ten will help? Or the second set of five if the first set of five didn't?
The way sympathetic nerve blocks are supposed to work is they build in success. Think of it like the crescendo at the end of a movie or a concert or a opera or a big drum solo or whatever you can relate to based on your age and music tastes.
The music/drums starts out slowly
(first block a little relief, maybe hours, perhaps a day or longer),
then builds a little more, little louder now
(second block a little more relief, instead of a day maybe you get a week or two of relief)
louder still, you can feel the ground start to shake
(third block really gives relief, instead of week or two maybe longer, 3 weeks or more)
So, if these three work one of two things will happen next.
1) The CRPS will start to recede and the Dr will wait before doing another block, to see what will happen. See if maybe it will go away on its own. The less times you inject the body, subject the body to a needle, the better. (one of the most painful forms of CRPS is called Venipuncture CRPS caused by a needle, it can even be caused by giving blood).
2) The Dr will try a fourth block to see if you can get even longer relief.
HOWEVER, if the Dr, (typically an Anesthesiologist does these types of blocks by the way), does not get these types of results from the first blocks, a CRPS-skilled physician usually stops there. It depends on how long you have had CRPS, how far out from the initial injury you are (they work best within the first 6-9 months but definitely within the first 12 months is key).
If you have not gotten any relief from the blocks, from any of them, if you showed little or no response (warmth in the extremity , either hand or foot), and very little pain relief from them, and yet the Dr is still doing them, 3, 4, 5 blocks down the road, start questioning him. Why are we still doing them???
Again, look at the article on SMP and IMP here.
Remember that your Doctor is part of your healthcare team and you are the captain. It is ok for you to question any play call. If you don't understand something, ASK! Not sure why a treatment is being done? Ask! Not sure why a particular medication is being prescribed or what it is supposed to do? Ask! Not sure why the blocks aren't working and/or why we are still doing more? Ask! Not sure what will happen next in the treatment plan if this step doesn't work? Ask!
If your current Doctor doesn't like to discuss these things with you, believes he doesn't need to, then you need to replace that particular player on your team and find another Doctor. There are plenty of amazing Doctors out there who are team players. You might be surprised how many there are who are willing to work with you, who are actually eager to have a patient who is interested in being a part of the treatment plan. Even if they are not currently the most educated in the disease don't let that stop you, they might be willing to learn. Some of the best Drs I have ever had over the last four decades battling this disease have been the ones who did On-The-Job-Training. They did not mind my bringing in information from the internet as long as it was from a reputable source, talking with me about the disease, our plan to battle it, and I truly felt a partner in it. It makes a huge difference in how you approach it.
3) How does a block actually work? What is entailed in one?
Answer - There is a good link here that illustrates a lumbar sympathetic block from Spine Universe. It is an excellent website and has wonderful information on a wide variety of topics, especially injections. This gives you a good idea of how blocks work.
You can visit one of their other pages if you want to get an overall view of a vast variety of INJECTIONS including some of the other types that would be given to CRPS patients.
Hope some of this information was helpful to you. We know that dealing with CRPS can be very difficult at the least but confusing at the most. The American RSDHope website was designed to try and help patients, loved ones, and medical professionals steer through the maze of this disease and not only better understand it but also better understand the patients who live with it 24/7.
Peace and freedom from pain, it is all we seek.
Keith - 38 year systemic CRPS survivor
I am not a medical professional of any kind, just a fellow patient and the information I share is not intended to replace any that your Dr has given you. Do not stop or start any treatment or medication that your Dr has given you or started you on without first consulting with your Physician.