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-   Reflex Sympathetic Dystrophy (RSD and CRPS) (https://www.neurotalk.org/reflex-sympathetic-dystrophy-rsd-and-crps-/)
-   -   Are Nerve Blocks really worth it? (https://www.neurotalk.org/reflex-sympathetic-dystrophy-rsd-and-crps-/90221-nerve-blocks-worth.html)

aj822 06-19-2009 02:22 PM

Are Nerve Blocks really worth it?
 
I am looking for some feedback and experiences with Sympathetic Nerve Blocks. I am new to this whole "CRPS...RSD" nightmare!

My Pain Specialist just performed a series of 3 lower lumbar blocks over the past 8 weeks, and I am trying to decide if they really help or if we are just spinning our wheels. He said if we don't get any better results, then he wants to do some kind of spinal stimulation. Not sure about that either! HELP!!

First block only lasted 5 hours. I initially had no feeling in my entire leg for about an hour then it slowly returned to normal. It warmed my leg/foot to 91 degrees which felt wonderful while it lasted. Over the next few days I really couldn’t tell if it helped my leg/foot was right back to subzero frozen and continued to have all of the normal (LOL) symptoms and pain that I have been fighting for months.

3 weeks later, 2nd block was performed. I had about 6 hours of relief from the cold - 95 degrees. Then when the temp started to drop, my knee (which is the original trauma area) went crazy. It had a fever of over 101 and swelled to twice normal size. The burning and intense pain caused my ears to ring and I was climbing the wall. Called Ortho the next morning and went in for a cortisone injection to help the bursa area and related areas where the nerve damage is to calm down. Funny part is my leg/foot was stone cold and was back to molten color. After a few days, my knee calmed down and I was able to handle the pain better but I had a hard couple of days. Saw no additional relief from the block.

2 wks later (Wed this week), back for third and final block. Block went fine but I had no feeling in my upper thigh for about 2 hours. Temp in leg/foot was 95 degrees and the pain was substantially down for the next 5 hours. Then the temperature in my entire leg (hip to toe) started rise. It went to over 101 degrees and I thought I was on fire. My leg was bright red and the burning was bone deep. The pain was off the charts. It lasted for almost 5 hours. Finally the temp started to decrease and my leg stayed lukewarm for the next several hours. Finally, by mid morning the next day, entire leg/foot was right back to the frozen tundra and the normal awful symptoms returned.

Today is day two since the block and I am back to wearing my wool sock and dealing with the same pain and discomfort as always. My knee (I call it my sweet spot) is starting to hurt again but they don’t want to inject again so soon. So I suffer!

Do you keep doing blocks to see if you finally get response or if you are too far along with RSD do you just mark this treatment off the list and move onto the next option?

I just want some kind of relief… Is it possible? :confused:

ali12 06-19-2009 03:13 PM

I really think it depends on the indivual and how YOU feel about getting the nerve blocks. It sounds to me as though you aren't getting that much relief and the pain/numbness increases for a little while afterwards so it makes me wonder whether the blocks are worth it in your case, especially just for 6 hours of pain relief?

I have had 3 nerve blocks. I was diagnosed with RSD when I was 12 years old and my doctor decided to do a Guanethidine Block into my foot around the ankle bone.

I was put to sleep for the block due to my age as my doctor thought it would be too scary for me. The blcok didn't work at all and it made me a LOT worse!!

When I woke up from the block, I found that I couldn't walk. Everytime I tried to get up and walk, my legs would just shoot out in front of me and I would fall to the ground. My doctor thought it would pass so sent me home for the weekend.

As we were home, my mum found an article on the internet stating that you should never inject into an RSD limb unless you absolutely have to has it has been proven to make things worse. My doctor didn't know that before the block unfortunately and didn't give us enough time to read up on it as he wanted it doing ASAP.

I returned back to the hospital 2 days after the block to see my dr and still couldn't walk. He was stunned as to the side effect I was having from the block so took videos of my walking etc.

We kept getting told that the affects would wear off but they didn't and I was left in a wheelchair for 13 months which was extremely hard to cope with. I lost all of the independence I had and had to rely on my mum to take me everywhere which wasn't nice for a 12-13 year old!!!!

In about April of last year, I developed an ingrown toenail on my RSD leg. We kept trying to ignore it but it got really badly infected so we had no choice but to have it taken off. My dr put me to sleep for the procedure and decided to do a ring block into my toe to try and ease the pain after the procedure.

Once again, my body reacted to the procedure and I developed severe myoclonic spasms in my leg. My leg would jerk around on its own uncontrolably. My dr couldn't believe how bad it was and said that I have the most wound up nerves he has ever seen and I have to stay away from all procedures to my RSD limbs unless neccasary as they will only make things worse.

At the end of last year, my PTs decided to make a splint for my RSD leg as I have pretty bad Dystonia (a movement disorder) in it. I had to be put to sleep for them to make a cast for my leg as they can't move my foot hardly whilst I am awake and even when asleep, it takes a lot of force.

My dr knew the procedure would increase my pain so did an epidural and put Ketamine in it. I didnt want to have the epidural seeing as though the blocks made me worse but he assured me he would be careful.

Thankfully, the epidural went well and I got about 6 hrs pain relief from it which was really good!! My dr wont do any more now though as he said it wasn't really worth it for the ammount of pain relief I got.

I think it might be an idea for you to speak to your dr and see how he feels about doing the blocks and whether they are worth doing seeing as though you dont get much pain relief. How long have you had RSD? I know the blocks are proven to work better within the first 3 months of onset.

It is really you that has to decide whether you want to go ahead with the blocks. No one can force you into doing anything you don't want to! Weigh up the pro's and con's and then decide if they are worth it.

As for the spinal cord stimulation, i'd do a lot of research into it before going ahead, especially if you are relatively knew to the diagnosis and haven't tried all of the options available to you. I think sometimes drs want to push the invasive procedures without trying all of the other stuff first.

I wish you the best of luck and know you will make the right decision whatever you decide to do!

Please keep us posted when you can!

Alison.

stressedout 06-19-2009 04:00 PM

Quote:

Originally Posted by aj822 (Post 525547)
I am looking for some feedback and experiences with Sympathetic Nerve Blocks. I am new to this whole "CRPS...RSD" nightmare!

My Pain Specialist just performed a series of 3 lower lumbar blocks over the past 8 weeks, and I am trying to decide if they really help or if we are just spinning our wheels. He said if we don't get any better results, then he wants to do some kind of spinal stimulation. Not sure about that either! HELP!!

First block only lasted 5 hours. I initially had no feeling in my entire leg for about an hour then it slowly returned to normal. It warmed my leg/foot to 91 degrees which felt wonderful while it lasted. Over the next few days I really couldn’t tell if it helped my leg/foot was right back to subzero frozen and continued to have all of the normal (LOL) symptoms and pain that I have been fighting for months.


3 weeks later, 2nd block was performed. I had about 6 hours of relief from the cold - 95 degrees. Then when the temp started to drop, my knee (which is the original trauma area) went crazy. It had a fever of over 101 and swelled to twice normal size. The burning and intense pain caused my ears to ring and I was climbing the wall. Called Ortho the next morning and went in for a cortisone injection to help the bursa area and related areas where the nerve damage is to calm down. Funny part is my leg/foot was stone cold and was back to molten color. After a few days, my knee calmed down and I was able to handle the pain better but I had a hard couple of days. Saw no additional relief from the block.

2 wks later (Wed this week), back for third and final block. Block went fine but I had no feeling in my upper thigh for about 2 hours. Temp in leg/foot was 95 degrees and the pain was substantially down for the next 5 hours. Then the temperature in my entire leg (hip to toe) started rise. It went to over 101 degrees and I thought I was on fire. My leg was bright red and the burning was bone deep. The pain was off the charts. It lasted for almost 5 hours. Finally the temp started to decrease and my leg stayed lukewarm for the next several hours. Finally, by mid morning the next day, entire leg/foot was right back to the frozen tundra and the normal awful symptoms returned.

Today is day two since the block and I am back to wearing my wool sock and dealing with the same pain and discomfort as always. My knee (I call it my sweet spot) is starting to hurt again but they don’t want to inject again so soon. So I suffer!

Do you keep doing blocks to see if you finally get response or if you are too far along with RSD do you just mark this treatment off the list and move onto the next option?

I just want some kind of relief… Is it possible? :confused:

I am recently diagnosed also. Original injury Dec 2008, diagnosed May 09. I have just finished 6 stellate ganglion nerve blocks. I had 2 a wk for 2 wks then the 5th and 6th were a wk apart. They took about 75% of my pain away but only lasted a wk and a half. I am back to square on now. Dr doesn't want to do anymore blocks on me now either. Now I am trying Lyrica. I don't like meds but have given in, this is just too much to handle. I also had to go to Occupational therapy after each nerve block (been in OT since March). I am also looking into natural supplements that may help so I don't have to any other meds. I am trying to get my life back, I have always been in control and organized, have 3 teens and am very active but this has turned my life upside down.

fmichael 06-19-2009 04:17 PM

Dear AJ -

How long have you been symptomatic? The reason I ask is that there is fairly strong evidence that blocks are most effective when initiated within the first four or five months of disease onset.

Although I have absolutely no evidence for this proposition, I have a hunch that one of the reasons I didn't get aggressive spreading was because I was getting regular lumbar sympathetic blocks early on, until I no longer had any response to them, roughly 8 months after the pain first set in. That said, there may be a number of people on the forum who got prompt blocks but to no avail. This maybe worth a poll.

Mike

aj822 06-19-2009 04:30 PM

My Doc's both Ortho and Pain Specialist are thinking that I am more than a year into this. They just put a name to the symptoms a few months ago but they are my newest set of doctors. After all of my research I realize now that I have had progressing symptoms for a while. Shortly after my first surgery back in Oct 2007, I started having the burning sensation and swelling in my lower leg. This is when my FORMER Ortho - walked out on him when he acted like I was crazy when I kept complaining about the bone deep burning sensation that wouldn't go away. Got second opinion for my knee and have two bone plug surgeries since. Now RSD is full blown in entire leg. Hope this makes sense!

daniella 06-19-2009 04:33 PM

I had my first lumbar block after 2 year of rsd a month ago and it increased my pain. I had put it off due to that fear but after other doc before this one who again suggested it wanted to do more major like scs and my pain was so high I decided to try one. I guess of course I am not happy with it increasing my pain which lasted the flare up for a couple days it did give direction and now I am back trying meds again and a different approach and it also led me to the possibility that the scs for me would also do similar to what the block. I have heard of people getting relief to where they are able to get active which is key with rsd. Can you see another pain doc to get another opinion? Have you tried any meds? I am sorry you are suffering and wish I had more answers

fmichael 06-19-2009 05:07 PM

AJ -

My sense is that one should stay with them even if you get only one day's relief, where I have a hunch they are doing some good below the suface, so to speak. But what I was advised by my treating pm, way back when, was that once I no longer had any response in terms of relief from pain, there was no point in continuing the treatment.

I would urge you to discuss this with your current treating physicians, who appear to know what they're doing.

Mike

GalenaFaolan 06-19-2009 06:26 PM

At some point all people with rsd have their pain go SIP, sympathetically independent. This is the reason your pain increased after the block. Your pain was already independent at that point. WC made me get a block a year after rsd started and it threw me into a full body flare for 2 months.

Blocks only help pain that is SMP, sympathetically maintained. There is always hope when the pain is still SMP. Once it is SIP, blocks will not help at all and, from experience and talking to LOTS of people lol, it typically increases pain for awhile.

The SCS is not something the top rsd docs want any rsd to get, period. It is too invasive and the majority of people get much worse with big time spread and multiple surgeries after scs implant. The scs only helps pain that is SMP too. It does not touch pain that is SIP.

Hope this helps some of ya'll out in understanding the why.

Hugs,

Karen

Quote:

Originally Posted by daniella (Post 525601)
I had my first lumbar block after 2 year of rsd a month ago and it increased my pain. I had put it off due to that fear but after other doc before this one who again suggested it wanted to do more major like scs and my pain was so high I decided to try one. I guess of course I am not happy with it increasing my pain which lasted the flare up for a couple days it did give direction and now I am back trying meds again and a different approach and it also led me to the possibility that the scs for me would also do similar to what the block. I have heard of people getting relief to where they are able to get active which is key with rsd. Can you see another pain doc to get another opinion? Have you tried any meds? I am sorry you are suffering and wish I had more answers


AintSoBad 06-20-2009 10:08 AM

Quote:

Originally Posted by aj822 (Post 525599)
My Doc's both Ortho and Pain Specialist are thinking that I am more than a year into this. They just put a name to the symptoms a few months ago but they are my newest set of doctors. After all of my research I realize now that I have had progressing symptoms for a while. Shortly after my first surgery back in Oct 2007, I started having the burning sensation and swelling in my lower leg. This is when my FORMER Ortho - walked out on him when he acted like I was crazy when I kept complaining about the bone deep burning sensation that wouldn't go away. Got second opinion for my knee and have two bone plug surgeries since. Now RSD is full blown in entire leg. Hope this makes sense!




AJ;
It seems your "former" ortho is worried about his liability, or well, who knows? His ego got busted down... Do with that what you will... Seriously!

Get on to getting as best as you can be..
RSD is not curable.

I'm going to tell you a bit about my nerve blocks by the MAN, DR Schwartzman, in Philly.
They were done oh, say around 1989ish....?
But, they were done only on a DIAGNOSTIC BASIS!

In other words, they do a nerve block, in the AM, EARLY! (One of those GIANT ***'d Stainless steel needles that hang on the wall with others, handed down from generation to the next.. I saw that thing taken off the wall, and my "stats" started beeping. OK, something like Valium 50mg was introduced (nice intro, huh?).
The guys feels around those two kind of WTHeck are they called, one on either side of my Adam's apple, yea, he gets it and sticks that GIANT thing into my neck, right next to that (tendon, or whatever it is), right above my collar bone. (STOP, if you put your hand there, you can feel it).
So, he sticks it in, (I"m awake), and all my monitors are beeping again!) My feet are NOT on the bed! (Can you imagine? This GIANT TWO FOOT NEEDLE is stuk in my neck, and he's "diggin" around with it!) AGH!!!!!!
Oh Lord!
That friggin' "Needle" is in me, and, he starts "digging around" with it. ARGH! I could feel/hear the ripping/tearing that the needle was doing! Can you feel that? WHAT? YES!!!!!!
Pump in more relaxer...
As if it's gonna help now....
(remember, I was taken out of full sleep, to do this).

YAK! More digging and tearing, OUCH! He's shooting that stuff (who knows what?) into me.
Okay. Whew........................
I'm rolled back to my room, and rolled into bed.
Doctor Schwartzman comes in, on morning rounds with a dozen students, (as usual). which is fine w/me.

My entire right side of my face, and arm, are NUMB!, back through my shoulder and all that.
BUT, AND
HOWEVER!
The Pain was still there!

Dr S, says, I knew it, you're too far gone.

Meaning, Too far gone for a Sympathectamy!

(Do they still do those?)

This is all I know about "Nerve Blocks", they were diagnostic, NOT Treatment!
(Yes, I understand that the "cycle of pain" must be broken, as pain, begets pain". But, that's still another "thought / theory" that if they break the "cycle", it will stop the pain. IMHO, NOT LIKELY!)
Stopping the cycle is Great! But, it WILL restart!

They've got to "break the cause!"
RSD is not a Cycle.
It is cause and reaction!

So then, they did this again when it moved to my legs. Same thing over again.
Same agony. (Easier to ignore in my *** and leg) sorry.

Nerve blocks are not a treatment, IMHO.
They're diagnostic only.
I am not a doctor.

Yet, I want to be shown a doctor, who has cured rsd, or even helped it for a while, with nerve blocks.?*

*there are specialized situ's where a nerve block, may help for a month, and thus, keep you from taking daily meds that may affect your function. That's completely different, and I have very little knowledge of it. I do know that my own doctor has it done. Yet, he has it done for his back, I know of Nobody, with Full body, who can get by on nerve blocks, if so, please tell me?

I wish you AJ, and all the rest, the very best of pain relief.
Meds affect us all differently. It's up to finding that "One Particular Doctor" who will stand with you, as a partner, and help you thwart this bastard off ya! And, keep it at Bay!
:hug::grouphug::hug:
Pete
Asb

fmichael 06-20-2009 11:21 AM

Pete -

I agree that the data is sparce, but there is evidence that patients starting blocks within a few weeks of the onset of CRPS had significant relief lasting two weeks after the last injection, while the farther out treatment was, the less effective it would be. "Efficacy of Stellate Ganglion Blockade for the Management of Type 1 Complex Regional Pain Syndrome," Ackerman WE, Zhang JM, South Med J. 2006; 99:1 084-1088 at 1087, free full text at http://www.rsds.org/2/library/articl...lion_block.pdf
Patients who had early SGB treatment following
the onset of their symptoms had significantly better
pain relief following SGB therapy (r = 0.9).
Now, while I understand and appreciate Karen's point about blocks not working once the pain is SIP, I suspect that something deeper is going on, where the pattern of response as a funtion of the interval between the development of symptoms and initial treatment in the SGB study almost exactly maps with the results of studies strongly suggesting that low dose ketamine can have lasting effects, if and only if initiated within a few weeks of the advent of symptoms. For a good comparision of the results of several low-dose ketamine studies, see the "Discussion" section of "A Pilot Open-Label Study of the Efficacy of Subanesthetic Isometric S(+)-Ketamine in Refractory CRPS Patients," Kiefer RT, Rohr P, Ploppa A, et al, Pain Med. 2008; 9(1):44-54, 50- 53, free full text at http://www.rsds.org/2/library/articl...ohr_Ploppa.pdf. And for anyone who doubts the proposition that ketamine administered early enough can in fact be a "cure," read one of the greatest studies ever published, "Subanesthetic Ketamine Infusion Therapy: A Retrospective Analysis of a Novel Therapeutic Approach to Complex Regional Pain Syndrome," Correll GE, Maleki J, Gracely EJ, Muir JJ, Harbut RE, Pain Med. 2004; 5:263-275, free full text at http://www.rsds.org/2/library/articl...V_Ketamine.pdf.

Something significant is clearly going on here.

Makes one wish that we all had have the level of care that I understand is available in Germany, where local anesthetic is pumped for some time into the affected area, immediately upon the advent of symptoms.

Mike

AintSoBad 06-20-2009 01:18 PM

Quote:

Originally Posted by fmichael (Post 525866)
Pete -

I agree that the data is sparce, but the is evidence that patients starting blocks within a few weeks of the onset of CRPS had significant relief lasting two weeks after the last injection. "Efficacy of Stellate Ganglion Blockade for the Management of Type 1 Complex Regional Pain Syndrome," Ackerman WE, Zhang JM, South Med J. 2006; 99:1 084-1088 at 1087, free full text at http://www.rsds.org/2/library/articl...lion_block.pdf
Patients who had early SGB treatment following
the onset of their symptoms had significantly better
pain relief following SGB therapy (r = 0.9).
This is consistant with studies strongly suggesting that low dose ketamine can have lasting effects, if and only if initiated within a few weeks of the advent of symptoms. For a good comparision of the results of several studies, see the "Discussion" section of "A Pilot Open-Label Study of the Efficacy of Subanesthetic Isometric S(+)-Ketamine in Refractory CRPS Patients," Kiefer RT, Rohr P, Ploppa A, et al, Pain Med. 2008; 9(1):44-54, 50- 53, free full text at http://www.rsds.org/2/library/articl...ohr_Ploppa.pdf. And for anyone who doubts that proposition, read one of the greatest studies ever published, "Subanesthetic Ketamine Infusion Therapy: A Retrospective Analysis of a Novel Therapeutic Approach to Complex Regional Pain Syndrome," Correll GE, Maleki J, Gracely EJ, Muir JJ, Harbut RE, Pain Med. 2004; 5:263-275, free full text at http://www.rsds.org/2/library/articl...V_Ketamine.pdf.

Something significant is clearly going on here.

Makes one want to have the level of care that I understand is available in Germany, where local anesthetic is pumped for some time into the affected area, immediately upon the advent of symptoms.

Mike




Mike
You are, as always correct.
See they didn't do this to me, until at least 7 years after the accident that initiated the RSD.
So, I forgot to add that into the "diagram" of treatment....
Yet, the blocks for my lower extremities, were on time, and did the same nothing.
It's all for one!
Each of us reacts differently.
I suppose
that
the best I mean to say is,
If it doesn't work for you,
don't keep going back, and back, and back!

You'll know after a try or two. I think?

That's all......

Pete
Asb

Thanks Mike!

fmichael 06-20-2009 04:42 PM

ps to my last
 
This has been posted many times before, but for a great article, written for laymen, on the use of continuous regional anesthesia on the battlefield in Iraq, and the amazing results they have had with it, check out Silberman S. The Painful Truth. Wired Magazine. 2005 February;13(02). Available at http://www.wired.com/wired/archive/13.02/pain.html?pg=6.

And note to Karen: I just amended my last post (after Pete had captured it for his reply) to address the point on SIP that you had made earlier.

SandyRI 06-20-2009 09:27 PM

I had a series of 7 SGB in Boston at St. E's - the first was Christmas Eve, the last one was May 11th. When my doctor administered the last block, he used more medication than he had in previous blocks with the notion that it would be my last, because he was referring me to the Beth Israel where he thought I would be accepted into their low dose ketamine program (a disastrous appt for me - I still cry about the monstrous docs I had the misfortune to meet, and the fact that meds exist that can help me that I'll never be able to get. Life is truly not fair.)

In any case, the 7 blocks gave me about 6 months of relief from many of my symptoms. My life wasn't perfect, but it was so much better than it is now. Since the last block wore off, I am flaring out of control so that even my Methodone isn't helping my head pain much anymore. I took a medical leave of absence from work as of last friday.

The last block may have caused my RSD to spread to leg, or perhaps it was going to spread anyway - I'll never know. But I am sure that I now have RSD in my right leg.

I am heading back to St. E's on Tuesday. After I have an MRI of my back, I may have a lumbar block done. And perhaps I'll have another SGB done to help my head. I don't know if they'll do both. But I do know that I would rather live without the pain and other symptoms, even for a period of just 3 weeks, than live like this.

Sandy

Mslday 06-21-2009 11:04 PM

I'm sorry to get in here late.

I just thought I would add some thoughts from my experiences.

In 2002-2003 I had numerous lumbar sympathetic blocks, so many I lost count. Yes they ultimately lost their effectiveness but I did have a terrific summer and made it through my wedding and honeymoon in a remission like state.

AJ, if it is possible to find a doctor who can give you a continuous week long peripheral block as described in the article Mike posted you may have a chance at keeping this monster at bay.

I wish you all the best.

MsL

Gymjunkie 06-22-2009 02:45 AM

Hi
I just wanted to add a short post to say that I don't exactly know what sort of blocks you had. If you had lumbar sympathetic blocks then you shouldn't have experienced any loss of sensation of movement if they were properly placed and carried out using a continuous x-ray to watch for the correct placement site.

Nerve blocks are not the same as these sympathetic lumbar blocks and are placed completely differently. They can cause loss of sensation.

I suggest you check the type of block you actually had done and, if you think it was suppposed to be a lumbar sympathetic block then try to find out if you can get someone else to do one for you (even just one) to see how you get on.

Mslday 06-23-2009 12:05 AM

I beg to differ gymjunkie.

It is my understanding that a lumbar sympathetic block is just one of many various types of nerve blocks available.

AJ specifically asked about lower lumbar sympathetic blocks which I have experience with.

Quote:

What is a Lumbar Sympathetic Block?

Lumbar Sympathetic Block is an injection of local anesthetic in the "sympathetic nerve tissue" – the nerves which are a part of Sympathetic Nervous System. The nerves are located on the either side of spine, in the back.

What is the purpose of it?

The injection blocks the Sympathetic Nerves. This may in turn reduce pain, swelling, color, and sweating changes in the lower extremity and may improve mobility. It is done as a part of the treatment of Reflex Sympathetic Dystrophy (RSD), Sympathetic Maintained Pain, Complex Regional Pain Syndrome, and Herpes Zoster (shingles) involving lower extremity.

Perhaps I'm missing something but that sounds like a nerve block to me.

http://www.reddinganesthesia.com/LSB%20faq.htm

MsL

Gymjunkie 06-23-2009 03:00 AM

Mslday
There are all sorts of different types of nerve block that can be done for different reasons - both diagnostic and therapeutic. That was why I asked about the type of block the OP had had done. I think you have misunderstood since I was actually saying exactly the same as you - that there are many different types of nerve block done in different places, for different reasons and which produce different effects and potential side effects.

I have had the same type of block (lumbar sympathetic block) that you are describing so you are not the only one with experience to share here.

aj822 06-25-2009 08:15 AM

Follow-Up on Block
 
First I want to say thanks for all of the great feedback! All of you are awesome!!

Karen... you explained the SMP and SIP so perfectly (thank you!). I was at a loss on how to explain that part of our conversation but that is what he said he was concerned about... that the nerve damage was SIP. What he was talking about now makes perfect sense!

Anyway, one week since my (lower lumbar sympathetic nerve block) and I have had a change in my pain pattern but not the good change we had hoped for. The block has made my entire leg very angry… mornings it's subzero with purple toes and ankle then by afternoon, intense swelling, burning heat and the pain deep in my bones has been off the chart. The spasms and twitching has never been this bad. :(

He called me yesterday to get a 7 day progress report, he said that he feared I was not going to respond very well to the procedure but we had to complete the series of blocks (3/3) to know for sure that blocks will not help me. The next plan of treatment is RF - Radiofrequency Ablation/Lesioning. He is nationally known both in the US and Canada for this procedure and said he has had good responses with RSD patients with SIP nerve damage. He really thinks this will help me.

So, I am now researching this one (I guess I should start a new thread on this procedure)!:confused:

All I know is that the past 7 days have been really rough! I am so tired of hurting and was not expecting this type of negative response from my leg. I guess I am emotionally disappointed… This monster is wearing me out!!!! :eek:

Smoke_666 06-26-2009 02:52 AM

Tell ya what...
 
Just from reading what y'all have posted, there's no way I'm going to have some (insert derogatory comment here) poke me to see what happens. Wow. Fer-get that. Ma pills pretty well set the pain back, and I'll be happy with that, thank you very much.

suz66 07-03-2009 06:07 PM

Greetings: I have had three nerve blocks and none of them have really helped me. the third one had a steroid in it and lasted about 1 wk. I don't believe that they are worth the time, discomfort and money unless they are working well for you. I have been using something that I got on the internet called DMSO. A fellow at my church said that he has been using it for pain relief for 40 years. If you can, get your doctor to give you some cortizone (10 to 1; mostly DMSO), it could help further. I haven't gotten the cortizone yet. I am 9 months into my RSD. Good luck to you.:)

baseballfan 07-05-2009 01:05 PM

Nerve Block Approved
 
Hi All,

The insurance company approved my sympathetic nerve block lumbar area. It is scheduled for 7/8/09. I am kind of of scared as this is my 1st block since being dxed in April of 09 with RSD. Between 2003-2009 I have had 8 ESI/nerve blocks and none of them have helped me. With each one though I always had hoped maybe this would be the one to work. I do have hope that maybe the nerve block on 7/8/09 will help. I know though whatever happens is in God's hands. After all there is a reason why I had to go through 3 fusions of the lumbar in less than a year and a half, have permanent nerve damage at L5 nerve root which caused bladder probs for me. Also has a reason why my RSD had moved into all my limbs and have all the side effects from the RSD like sweating, and red dots on my neck, ect. I have faith, hope, and love that is what gets me through the rough times, that and all of you on here and all my other friends, and family. :hug::hug::hug::hug: gentle to all my RSD friends

aj822 07-06-2009 08:18 AM

I am praying for you and sending good thoughts your way. I hope and pray you will find some relief. Keep us posted. You have lots of friends here who care! :grouphug:


Quote:

Originally Posted by baseballfan (Post 533132)
Hi All,

The insurance company approved my sympathetic nerve block lumbar area. It is scheduled for 7/8/09. I am kind of of scared as this is my 1st block since being dxed in April of 09 with RSD. Between 2003-2009 I have had 8 ESI/nerve blocks and none of them have helped me. With each one though I always had hoped maybe this would be the one to work. I do have hope that maybe the nerve block on 7/8/09 will help. I know though whatever happens is in God's hands. After all there is a reason why I had to go through 3 fusions of the lumbar in less than a year and a half, have permanent nerve damage at L5 nerve root which caused bladder probs for me. Also has a reason why my RSD had moved into all my limbs and have all the side effects from the RSD like sweating, and red dots on my neck, ect. I have faith, hope, and love that is what gets me through the rough times, that and all of you on here and all my other friends, and family. :hug::hug::hug::hug: gentle to all my RSD friends


heartbeatmom 07-07-2009 09:57 PM

I am on my second lumbar injection...with no results. I am wondering if I too should continue. The only improvement I had was for about 1 hour my foot did warm up and turn a pink color instead of it's purple/gray look....at over 5 grand a shot, I'm not sure its wise to continue.


This is scarey stuff, I'm new to all this too.

Good luck.

bobber 07-07-2009 10:32 PM

you in our prayers,,i believe in prayer,,and we do go thru everything for a reason,,and God is glorified 1st peter 1:6-9 ...... i hope this needle does the trick............bobber

fmichael 07-08-2009 03:26 AM

Quote:

Originally Posted by heartbeatmom (Post 534302)
I am on my second lumbar injection...with no results. I am wondering if I too should continue. The only improvement I had was for about 1 hour my foot did warm up and turn a pink color instead of it's purple/gray look....at over 5 grand a shot, I'm not sure its wise to continue.

Dear heartbeatmom,

Ballpark, if you started within just a few months of the time the pain first began, you're in the best position for the blocks to help.

If you haven't done so, check out a study I cited on the first page of this thread, "Efficacy of Stellate Ganglion Blockade for the Management of Type 1 Complex Regional Pain Syndrome," Ackerman WE, Zhang JM, South Med J. 2006; 99:1 084-1088 at 1087, free full text at http://www.rsds.org/2/library/articl...lion_block.pdf and in particular Table 2 at page 1086, which shows that in a study of 25 people with CRPS in one hand following surgery for carpal tunnel syndrome, of those who received 3 stellate ganglion blocks over a 3-week interval, those who had complete relief from pain started the blocks within 4-6 weeks of the onset of pain, those who had partial relief started at the 10 - 12.5 week mark, and those who got no relief at all ranged all the way from 11.5 to 65 and 1/2 weeks. Interestingly, although all patients were tested until six months after completing treatment, both of the groups with complete relief and partial relief saw that relief end at the same time: 29 weeks following completion of the 3-round cycle of blocks.

As best I've searched, I can't find any similar studies for lumbar sympathetic blocks, but I would be surprised if it differed much from the S.G.B. study we do have, where nearly the same results occurs (success as inversely correlated with lenght of time between start of symptoms and initiation of treatment) with low-dose ketamine infusions, as set forth in my earlier post of the thread. (In fact, I just came across a study that found that the use of a fish hormone typically used to treat osteoporosis [remind anyone of pamidromates/organophosphates?] is effective in preventing CRPS-1 in stroke patients withe severe paralysis of one side of the body if given within four weeks of the stroke, but not after six. Use of Calcitonin to Prevent Complex Regional Pain Syndrome Type I in Severe Hemiplegic Patients After Stroke, Matayoshi S et al, Disabil Rehabil. 2009 May 19:1-7. [Epub ahead of print) abstract at http://www.ncbi.nlm.nih.gov/pubmed/1...ubmed_RVDocSum.)

I know that my first L.S.B. did nothing, but the next time my doctor decided to do a "bilateral" block, which is to say that I got two injections, one on either of the spine. And my pain went into remission for two weeks. And I started at roughly 12 weeks out.

So, if you started the blocks within a relatively short period of time after the pain first set in, the odds appear to be in your favor if you have a third one at least - and it has to be done under flouroscopy so the medication is delivered precisely without damaging any nerves - but I would consider asking your doctor what s/he though of doing bilateral injections.

Hope this is useful.

Mike

heartbeatmom 07-08-2009 07:48 PM

thanks for that info...yes, it's been since last august when I got hurt and knew it was not a normal injury...so it's been almost a year. The doctor is talking about some tube that is inserted along the spine with a device that will shock or stimulate the nerves...that must be his next move. I'm not sure I like the idea, but I dont like the idea of living like this. This is terrible. My foot looks so deformed and ugly. I walk with a cane and I'm not even 37 yet. I wish there was something that will make it normal again.:(

fmichael 07-09-2009 10:24 AM

Dear heartbeatmom -

You didn't say (at least here) but have you has intensive PT including hydrotherapy, where you work out the leg in a large tank with a built-in treadmill? It's something to consider before going to the wires. And on the last point, just run a search for threads containing the term SCS.

Mike

Praise God 07-09-2009 11:10 AM

Nerve Pain
 
Wow, I am so sorry you are all going through this kind of pain. Let me tell you I understand your pain. I was diagnosed with RSD in Dec. 2007 and have been trying to deal with it since then. I cut my left index finger and ended up with pain throughout my entire body (very rare, I am told). I did the blocks, different pain medications, saw a neurologist which tried different pain medications. The pain was unbelievable - intense burning 24/7 (7 on a scale of 10) - I could not function nor sleep. In August of 2008, after much prayer, we found a doctor who is a professor of neurosurgery at John Hopkins and he felt the pain was coming from the nerve damage in my finger. I had surgery to cut the damaged nerve and have it grow back - yes peripheral nerves do grow back - slowly - about 1 mm per day. The pain went even higher (8) as the nerve grew back (and I experience all sorts of new nerve pain, stabbing, shooting, vibrations, etc.). During this time I was doing PT and damaged the nerve about 6 weeks after surgery. Eventually, after about 3.5 months the pain was almost completely gone for about 9 days (what a joy that was) then it came back to about half of what it was before surgery (we believe I damaged the nerve during PT). Much more bearable at a 4 but still too high. By May 2009, I stopped using my hand and as long as I did not move the finger the pain stayed around a 1 or 2 but any movement of the hand sent it up (by this time it is 9 months after surgery). My arm has atrophied. I decided on a second surgery to bury the nerve in a bone in my hand to see if this would finally eliminate the pain and allow me to use my hand. I am 2 weeks after my second surgery and still waiting to see if the nerve will calm down.

I saw an article where researches now think RSD is simply nerve damage somewhere in the body. They know people can get RSD from a visable injury to the nerve (laceration, broken bone - Type II) - more and more doctors are now trying to repair the nerve (google nerve reconstruction, nerve grafting, nerve resection). Sometimes people don't remember dropping a can on their foot or hitting their elbow and then a while later they have RSD symptoms. Type I.

While I was at the PT office, I saw a man who simply twisted his arm and have nerve pain and a woman who simply bumped her arm on the fridge door and had nerve pain. They usually start with PT to try and resolve it but it if persists, surgery may be an option.

If they can find the source and fix the problem, the pain should go away or at least lessen.

Most of the doctors I saw (about 4 doctors) said that the cut probably started the problem but it was now its own problem and that fixing the nerve would not help. Well, for me, it did help somewhat.

Find a neurosurgeon who specializes in this.

Don't give up hope! With God, all things are possible!

Hope this helps you!

baseballfan 07-10-2009 07:34 PM

results of nerve block 7/8/09
 
Hi All,

I had my 1st sympathetic nerve block 7/8/09. So far the only thing the block has done is reduce my swelling in my left side. I did get the warm feeling for a while in my left leg and foot and left arm and hand. The pain was aweful with the warm feeling. Burning, stabbing, aching. ect. I still have horrible pain in my left foot. I am keeping a pain journal from my inj. to help my doc. My doc next wants to do the same block on my right side. Don't know if I want to go through with this again. Bobber I do agree with you God has a reason for everything that happens in our life and He is always there for us anytime. :grouphug::grouphug::grouphug::grouphug:

Kate


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