Reflex Sympathetic Dystrophy (RSD and CRPS) Reflex Sympathetic Dystrophy (Complex Regional Pain Syndromes Type I) and Causalgia (Complex Regional Pain Syndromes Type II)(RSD and CRPS)

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Old 11-24-2011, 12:58 AM #11
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Originally Posted by kemmererja View Post
Thank you so much for all your input. It is very much appreciated. My wife had her first Stellar Ganglion Nerve Block today. We are not sure how to interpret the results. She went into the procedure with a pain level of 3 and left with a pain level of 4. She also left with a slight red streak going down her hand that was hurting which she has not had previously. So the nerve block did nothing for pain. But I am curious why her hand with the RSD, which has been cold was now significantly warmer than her good hand. I assume more blood is now flowing into the RSD hand. We were so disappointed in the outcome of no reduction of pain Nurses and doctors were all touting how wonderful the block would be and how some wake up from the procedure with no pain and can move their fingers. While it is wonderful for many, it did nothing for us. We also expected more since the injury happened a little over 2 months ago. So we are sad. The doctor wants to try another block next week to see if we have a better outcome.
Warming of the extremity is an indicator that the block was on mark. She should have also experienced a temporary Horner's syndrome (Google it). You are in a good time frame to be treating with SGB's so I would continue with multiple blocks. I started with SGB's at 8 weeks post-surgery and started to notice progressive relief after 5 or 6. My results peaked probably around number 9 or 10 but continue to go back every 4 or 5 months for one or two when my symptoms degrade. I have had a total of 17 or so now but they still work for awhile after each series so for a bit, I am happy as pigs in slop.

The fingers stiffness could just be a residual from immobilization, unrelated to CRPS, that will resolve with PT. BTW, physical therapy is essential at this point especially after blocks. Unless there is a reason to do otherwise, she should try to use the hand as normally as possible to help regain function and avoid contractures (which perpetuates more pain and dysfunction).
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Old 11-29-2011, 12:22 AM #12
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I highly recommend Parafin dips. Either through therapy or on your own. Make sure if you do it on your own to really try and manipulate her fingers while the wax is warming her hand. Good Luck to you both
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Old 11-29-2011, 07:51 PM #13
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Hi, Thanks again so much for all your comments and ideas. It is very much appreciated as we try to make the right decisions. We had our 2nd nerve block today. While last week's Stellar Ganglion Nerve Block made the pain worse but did create a warm hand with the droopy face, today's was more successful. For the first time since the accident in mid-Sept, she is able with alot of painful effort to have the tip of her thumb touch the tips of all her fingers. That is a huge success since she has not been able to move two of her fingers. She was also able to sign her name using 3 fingers comfortably. But as each hour passes, she can feel more and more pain returning and getting more difficult to touch the thumb with the other fingers. Someone asked what else she is doing for treatment She is doing physical therapy 3 times per week with a certified hand therapist, ear acupuncture from an acupuncturist who has a personal interest in treating RSD, takes Lyrica, clinodine patch, daily parifin dips or epson salt soak for the hand, and hand exercises throughout the day. One of the most useful things she does when she goes to sleep is wraps her hand with globs of Topricin in saran wrap. This seems to take away alot of pain during the night. Our next nerve block is scheduled for Monday. We are hoping to get a little more mileage out of this one in fear the doctor will stop performing these nerve blocks. Thanks again for all your comments. Jerry
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Old 11-29-2011, 11:28 PM #14
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I am so happy to hear that the second block was more successful. I pray that the effects just last longer and longer. Sounds like you are on the right track with treatment so that is wonderful. You are a great person to stick by her and support her throughout all this. We don't always take the time to acknowledge our loved ones for their support...but it means a great deal to us when we are suffering so much. Please keep us posted on how things go...I hope she gets some long term relief with all the things she's got going on right now with treatment.
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Old 12-05-2011, 11:30 PM #15
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Hello, I am new to this site, and it seems already, that I am in the right place. First, let me tell you that I hate rsd, and what it does to you and your family!!!
My husband was diagnosed after sustaining a work related injury. He had to have his right shoulder operated on and go through therapy, but he just wasn't getting any better, numerous blocks and injections later, the doctor said" I think you might have rsd" sure enough.

After 2years of on going blocks and surgeries my husband can't even climb a flight of stairs without needing his inhaler. For a relatively healthy 36 yo man, asthma is not the cause, but rather rsd has affected his lungs. I feel that it has attacked his heart or it is now. My husband used to climb trees and always be on the go, now my children and I have watched a man do a complete turn around.

Over the summer it reared it's ugly head, Sean was laid up in bed for 2 months couldn't move or get out of bed. We all would have "family slumber nights" so that the kids didn't get too worried or upset. Things started to seem as if they were getting better, but now we have new symptoms: numbness in one or more extremities, anxiety attacks, chest pain, difficulty breathing and constantly feeling sick.

I have tried to contact various doctors(pain mgmt) to no avail they either don't accept our insurance or don't know enough about rsd. The one doctor we went to wanted to re operate on his r shoulder and bicepital tendon,I said no my husband is no guinea pig. So now we are at a total loss, him not working and we have to hurry up and wait for disability.
I don't work for fear something may happen to him while I am at work, leaving our children in a very scary situation. My question is, I guess I could use all the help I can get, advice wanted. Sorry to be babbling, but I am super scared for my husband! I don't want to lose my best friend, and I don't want my children to lose their father either. So any help would be greatly appreciated. My best wishes to all!!! Kathy
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Old 12-06-2011, 09:23 AM #16
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Kathy
I see your from NJ. There are some great docs from what I'm told in that area. Start a new thread and copy and past what you have put in this thread. You will get lots of help.
:welco me_sign:
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Originally Posted by Kathysevans View Post
Hello, I am new to this site, and it seems already, that I am in the right place. First, let me tell you that I hate rsd, and what it does to you and your family!!!
My husband was diagnosed after sustaining a work related injury. He had to have his right shoulder operated on and go through therapy, but he just wasn't getting any better, numerous blocks and injections later, the doctor said" I think you might have rsd" sure enough.

After 2years of on going blocks and surgeries my husband can't even climb a flight of stairs without needing his inhaler. For a relatively healthy 36 yo man, asthma is not the cause, but rather rsd has affected his lungs. I feel that it has attacked his heart or it is now. My husband used to climb trees and always be on the go, now my children and I have watched a man do a complete turn around.

Over the summer it reared it's ugly head, Sean was laid up in bed for 2 months couldn't move or get out of bed. We all would have "family slumber nights" so that the kids didn't get too worried or upset. Things started to seem as if they were getting better, but now we have new symptoms: numbness in one or more extremities, anxiety attacks, chest pain, difficulty breathing and constantly feeling sick.

I have tried to contact various doctors(pain mgmt) to no avail they either don't accept our insurance or don't know enough about rsd. The one doctor we went to wanted to re operate on his r shoulder and bicepital tendon,I said no my husband is no guinea pig. So now we are at a total loss, him not working and we have to hurry up and wait for disability.
I don't work for fear something may happen to him while I am at work, leaving our children in a very scary situation. My question is, I guess I could use all the help I can get, advice wanted. Sorry to be babbling, but I am super scared for my husband! I don't want to lose my best friend, and I don't want my children to lose their father either. So any help would be greatly appreciated. My best wishes to all!!! Kathy
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Old 12-06-2011, 09:28 AM #17
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I am still fairly new to RSD compared to some others, so they are still doing the lsb (lower sympathic nerve blocks) and trial scs, which have all failed, until recently I went thru 3 lsb a week apart and the heat from them has lasted longer then previous 3 weeks and I could put a real shoe on. (couldn't walk after a week with them, but I could put them on.) So don't give up, I am happy to hear the 2nd went better, I hope the 3rd will be even better. How far apart are they?
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Old 12-06-2011, 07:03 PM #18
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Our stellar ganglion nerve blocks are 1 week apart. Our 3rd one appeared to not help at all with pain or increase movement just like the 1st. I was hoping the 3rd would be better than the 2nd where the 2nd made lots of hand movement progress. So my wife continues to be discouraged. She did have a very warm hand for a few hours. We will try our 4th nerve block Monday. We wonder if it is worth doing them. Thanks for your encouragement. Jerry
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Old 12-06-2011, 08:58 PM #19
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My doc will only do a serious of 3. Usually several months apart. I am 2.5 years into this and because I had a little improvement my doc continues to do them. I hope 4 goes well, but you may want to take a break. Also try those parrafin dips, they are great for skin care and will warm the hand.
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Old 12-06-2011, 11:34 PM #20
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Quote:
Originally Posted by kemmererja View Post
Our stellar ganglion nerve blocks are 1 week apart. Our 3rd one appeared to not help at all with pain or increase movement just like the 1st. I was hoping the 3rd would be better than the 2nd where the 2nd made lots of hand movement progress. So my wife continues to be discouraged. She did have a very warm hand for a few hours. We will try our 4th nerve block Monday. We wonder if it is worth doing them. Thanks for your encouragement. Jerry
That has to be disappointing...but don't give up. I hope the next one has success like or better than the second one. Even if they stop after the next one and want to wait a few months in between...it may still be worth it seeing as she did get some relief from the one block. Only you guys can make that decision though. But please don't let her stop trying to find relief. Keep supporting her with therapy and other things that she can try to do to help. There is unfortunately no miracle cure...just gotta keep fighting.
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