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-   Reflex Sympathetic Dystrophy (RSD and CRPS) (https://www.neurotalk.org/reflex-sympathetic-dystrophy-rsd-and-crps-/)
-   -   Radiofrequency nerve ablation (https://www.neurotalk.org/reflex-sympathetic-dystrophy-rsd-and-crps-/20119-radiofrequency-nerve-ablation.html)

lisalovesbilly 05-21-2007 11:35 AM

Radiofrequency nerve ablation
 
Have any of you had RF nerve ablation? I had it done on Wednesday and was told it could take up to four weeks to feel the good effects of it. Since the procedure I have been having really bad leg and foot cramps in the affected leg. I feel like my pain has increased by about 25% and I was just wondering if anyone out there has had a similar reaction. Thank you :)

Jomar 05-21-2007 05:57 PM

I did a forum wide search on "ablation"
here are the results as posts- the first ones are yours but then you will see the topic mentioned by other members and on other forums also.

updated link - I don't know what went wrong with that other one-
http://neurotalk.psychcentral.com/se...searchid=72108

theoneRogue420 05-22-2007 02:56 AM

Jo, when I clicked on your link, this is what it says:

Sorry - no matches. Please try some different terms

Just wanted to give you a head's up ;)

artist 05-22-2007 07:54 AM

Hi!

I knew there was a thread somewhere...and here it is :) !
In need of advice.....
http://neurotalk.psychcentral.com/sh...ad.php?t=17179

all the best.

Jomar 05-22-2007 10:21 AM

redid the forum wide search and got a useable link-
http://neurotalk.psychcentral.com/se...searchid=72108

Joselita 05-22-2007 11:15 AM

I have RFA's done....
 
Lisa,
Hello! Nice to meet you! I probably should have said that on the other thread, but...since I am here and all...I just figured that I would kill two birds with one stone. Besides, I tend to write longish posts, and if I tried to write on the other thread too, all that would happen is that you would have TWO long posts to read, instead of one! ROFL

Anyways..Welcome to Neurotalk! I wish that you didn't have to be here, but I am glad that you found us when you needed to. I am Joselita...AKA Jose...AKA..Josie...and probably other things as well (Heh, like "The Girl That Writes Too Much!" LOL). I answer to all of those. I have been hanging around for a very long time now. I have had RSD for about 10 years. My RSD started out in my right foot (where your big toe attaches to your foot, actually), when I stumbled into a curb while doing a charity walk. It spread up that leg, and then into my lower back. It spread up that far because of SCS surgeries, but I won't get into all of that right now. For a while, it pretty much stayed where it was, until I mildly sprained my right wrist a few years ago, and it spread up there too. I do have to say that the RSD in my upper body has never been the same or as bad as it is in my lower body. I have been very lucky.

I looked at your profile, and see we have a couple of things in common. First, even though I live down here in Alabama now, I am from Arizona (was born there, and lived down in the southern parts); and second that we are quite close in age; I am 37. I am a single mom with two kids. I have been a single mom through this whole journey with RSD. My kids are almost all grown up now (I started being a Mom very early....). In fact, I just watched my "Baby", my Son, graduate high school last night! He is 18, and his sister is 19.5 (16 months between them).

Ok. Enough off all of that. Sorry..but like I said..I wind up with longer posts. It is because I write like I talk...A LOT! ROFL!!

The main reason that I wanted to answer your post here, is because I get RFA's done as part of my treatment for RSD, and have for years now. I understand that what works for one person, doesn't work for the next...and might even make someone else worse....so I am not trying to discount anyone else's experiences or opinions or observations or anything like that. I am only trying to share MY experiences and all here with you.

Please try to not be alarmed that you have had an increase in pain after the procedure. Your doc should have explained to you that this could (and probably would) happen. He should have also explained to you that it could take up to 2 weeks (and, in some cases that I have read and heard about, more than that) to feel the full affects of the procedure. This is NOT a "Block", so it doesn't act like one. The reason that I am saying that is because I have read so many times where folks will post about a "Radio Frequency Block", and even say that their doc tells them that it is some sort of block similar to a sympathetic block. It is not. It is actually classified as a "Sympathectomy" , but to be honest, that has always confused me since there is nothing removed or "excised" and I thought that was what the "ectomy" part was all about?

I would NOT have any other "Real" type of Sympathectomy done, as I have known too many people that have had one (either surgical or chemical), and wound up with all sorts of awful troubles....usually worse than what they had going on to begin with. That said, I do know that there are folks that have had the same thing happen after having a RFA done, too. To me, though...they have been literally lifesavers.

There really is no way for a doctor to be able to tell you how long any relief that you may get from having a RFA done will last. That is because it pretty much depends on how fast or slow your body, in particular your nerves and their pathways, heal. I seem to heal pretty fast. I have found that this isn't something that I could judge by how I healed from things like cuts and bumps and bruises, because it takes me FOREVER to get anything like that healed up. Anyway....I wind up having a RFA procedure done every 6 to 12 months. Usually it is every 6 months. In between RFA's I go in about every 2 to 3 months for a Blocks. I ALWAYS have something done to my lower body. Depending on how things are going, and what it needed, I will also have something done to my upper body too. I don't have SGB's done for my upper body, so my doc is able to do both areas at one go. But, I don't have to go into all of that right now, and make this longer and more confusing, since you don't need to get into a bunch of stuff about upper body RSD.

Anyway...after I have my RFA's done...I feel pretty much like I have been run over by a mac truck. I do have an increase in pain.....and I have DIFFERENT pains than just my "normal" kinds, too. But, I know that it will lessen with each day (even if I can't exactly tell it every single day...LOL), and that in a week, or 2 at the longest (for me, at any rate....although it usually doesn't take quite as long as that, only sometimes), I will feel MUCH better.

I usually do notice some things pretty much right away after having my procedure done, though. I do notice that my leg is a nice more normal pink color, and that it is warmer. I think that this is because my doc puts some kind of other med in there while he is doing his thing? Not sure. He tells me, but I don't remember. That is because I get sedated. Not put to sleep....but enough so that I don't really care what is going on, and I don't remember. He also does this, and ALL of his procedures (LSB's SGB'S, whatever other kinds of blocks he does....everything!) under fluroscopy.

In that thread that Artist linked you too, I noticed that someone said that they were told that having an RFA done would cause them to loose not only the PAIN feeling (which, I am sad to inform you, I have yet to become "Pain Free" from ANY procedure I have had done), but ALL other feeling too. That has not ever been my experience. If that happened to me, I would be VERY concerned, and wonder what the heck my doc did wrong, and would be back up at his office SOOOO quick! Screw calling! I have back problems besides the RSD, and anything that would cause me a loss of feeling in any extremity would make me freak out. I surely wouldn't have it done over and over again! I haven't even ever had any BLOCK that has caused my to have a numb limb, as I have read so many other folks have. That just isn't what I want....not at all. Very scary.

Like I said...I have had increase in pain after the procedure, and then the gradual lowering of pain levels. My doc and the OR Nurses at the Hospital that he uses are WONDERFUL! They have figured out that one of the things that causes me LOTS of troubles and huge increases in pain after procedures in muscle spasms. So, I get a bag of robaxin started in my IV BEFORE the procedure to help out with that problem. It has worked wonders, I can tell you. I know that this might not work for everyone, as we are all different, and have different responses and whatnot, but once they started doing this, I started having even better effects from ALL of the procedures that I have done, rather it is an RFA or a regular Block. My "Normal" pain level is about 7.5-8. Once I get the full effect of the RFA my pain level has dropped as low as a 5!! Which made me VERY Happy indeed!

This is winding up pretty long...so I am going to wind it up. I hope that I have answered some of your questions? If you have more, please don't hesitate to ask. I will do my best to answer.....and I WILL try to keep it short. LOL

Take Care,
Jose

lisalovesbilly 05-22-2007 01:13 PM

thanks Jose
 
Jose,

Thank you for all of that wonderful information! I did call my pain doctor this morning regarding these cramps I had last night which were like Charlie horses, but lasted for 45 minutes or so at a pop, they went from my knee to my toes. He did say that this was all normal and that it should get better. I'm thinking if this is a normal reaction, then it must indicate that this is going to work and I am very excited about that. I could definitely go for a 5 on the pain scale. I was actually seeing little white flecks of light in my vision last night, I guess I was literally seeing stars.?.

We are very close in age. I have a 15-year-old son and I was a single mom too up until four years ago in August. I married my first love who was my best friend and saw me through cancer shortly after I had my son and also saw me through horrible relationships, uncontrolled bipolar, etc. That is a whole story in and of itself. My son is having knee surgery next Friday. From what I understand, RSD is not hereditary. It's bad enough he got the bipolar from me.

I need to get back to work, but I just want to thank you again for your post.

Lisa

Attybg 05-28-2007 06:21 PM

I had it done 3 times in an attempt to kill the nerve in the middle finger of my left hand. It was a waste of money. Medicare refused to pay for the 3d one

Chris Harmon 01-02-2009 09:50 AM

Question
 
Hey Lisa,
I am Chris Harmon and live in Fort Valley Va. I'm 52 and in great health accept for back surgerys and some nerve problems. Pretty focused. I had the RFA on my SI joint the other day-went well. But can this procedure be done on the big toe? In 10th grade I cut this toe nearly off, but it seems to be the most noticeable problem feeling that gets my attention. It keeps me focused that and seems to lead to my back. But when I have it up, no pressure on it I really have no back problem. But when I stand and walk I feel it. Can this RFA be done on your big toe is my question.

Thank you Lisa
Chris









Quote:

Originally Posted by Joselita (Post 103277)
Lisa,
Hello! Nice to meet you! I probably should have said that on the other thread, but...since I am here and all...I just figured that I would kill two birds with one stone. Besides, I tend to write longish posts, and if I tried to write on the other thread too, all that would happen is that you would have TWO long posts to read, instead of one! ROFL

Anyways..Welcome to Neurotalk! I wish that you didn't have to be here, but I am glad that you found us when you needed to. I am Joselita...AKA Jose...AKA..Josie...and probably other things as well (Heh, like "The Girl That Writes Too Much!" LOL). I answer to all of those. I have been hanging around for a very long time now. I have had RSD for about 10 years. My RSD started out in my right foot (where your big toe attaches to your foot, actually), when I stumbled into a curb while doing a charity walk. It spread up that leg, and then into my lower back. It spread up that far because of SCS surgeries, but I won't get into all of that right now. For a while, it pretty much stayed where it was, until I mildly sprained my right wrist a few years ago, and it spread up there too. I do have to say that the RSD in my upper body has never been the same or as bad as it is in my lower body. I have been very lucky.

I looked at your profile, and see we have a couple of things in common. First, even though I live down here in Alabama now, I am from Arizona (was born there, and lived down in the southern parts); and second that we are quite close in age; I am 37. I am a single mom with two kids. I have been a single mom through this whole journey with RSD. My kids are almost all grown up now (I started being a Mom very early....). In fact, I just watched my "Baby", my Son, graduate high school last night! He is 18, and his sister is 19.5 (16 months between them).

Ok. Enough off all of that. Sorry..but like I said..I wind up with longer posts. It is because I write like I talk...A LOT! ROFL!!

The main reason that I wanted to answer your post here, is because I get RFA's done as part of my treatment for RSD, and have for years now. I understand that what works for one person, doesn't work for the next...and might even make someone else worse....so I am not trying to discount anyone else's experiences or opinions or observations or anything like that. I am only trying to share MY experiences and all here with you.

Please try to not be alarmed that you have had an increase in pain after the procedure. Your doc should have explained to you that this could (and probably would) happen. He should have also explained to you that it could take up to 2 weeks (and, in some cases that I have read and heard about, more than that) to feel the full affects of the procedure. This is NOT a "Block", so it doesn't act like one. The reason that I am saying that is because I have read so many times where folks will post about a "Radio Frequency Block", and even say that their doc tells them that it is some sort of block similar to a sympathetic block. It is not. It is actually classified as a "Sympathectomy" , but to be honest, that has always confused me since there is nothing removed or "excised" and I thought that was what the "ectomy" part was all about?

I would NOT have any other "Real" type of Sympathectomy done, as I have known too many people that have had one (either surgical or chemical), and wound up with all sorts of awful troubles....usually worse than what they had going on to begin with. That said, I do know that there are folks that have had the same thing happen after having a RFA done, too. To me, though...they have been literally lifesavers.

There really is no way for a doctor to be able to tell you how long any relief that you may get from having a RFA done will last. That is because it pretty much depends on how fast or slow your body, in particular your nerves and their pathways, heal. I seem to heal pretty fast. I have found that this isn't something that I could judge by how I healed from things like cuts and bumps and bruises, because it takes me FOREVER to get anything like that healed up. Anyway....I wind up having a RFA procedure done every 6 to 12 months. Usually it is every 6 months. In between RFA's I go in about every 2 to 3 months for a Blocks. I ALWAYS have something done to my lower body. Depending on how things are going, and what it needed, I will also have something done to my upper body too. I don't have SGB's done for my upper body, so my doc is able to do both areas at one go. But, I don't have to go into all of that right now, and make this longer and more confusing, since you don't need to get into a bunch of stuff about upper body RSD.

Anyway...after I have my RFA's done...I feel pretty much like I have been run over by a mac truck. I do have an increase in pain.....and I have DIFFERENT pains than just my "normal" kinds, too. But, I know that it will lessen with each day (even if I can't exactly tell it every single day...LOL), and that in a week, or 2 at the longest (for me, at any rate....although it usually doesn't take quite as long as that, only sometimes), I will feel MUCH better.

I usually do notice some things pretty much right away after having my procedure done, though. I do notice that my leg is a nice more normal pink color, and that it is warmer. I think that this is because my doc puts some kind of other med in there while he is doing his thing? Not sure. He tells me, but I don't remember. That is because I get sedated. Not put to sleep....but enough so that I don't really care what is going on, and I don't remember. He also does this, and ALL of his procedures (LSB's SGB'S, whatever other kinds of blocks he does....everything!) under fluroscopy.

In that thread that Artist linked you too, I noticed that someone said that they were told that having an RFA done would cause them to loose not only the PAIN feeling (which, I am sad to inform you, I have yet to become "Pain Free" from ANY procedure I have had done), but ALL other feeling too. That has not ever been my experience. If that happened to me, I would be VERY concerned, and wonder what the heck my doc did wrong, and would be back up at his office SOOOO quick! Screw calling! I have back problems besides the RSD, and anything that would cause me a loss of feeling in any extremity would make me freak out. I surely wouldn't have it done over and over again! I haven't even ever had any BLOCK that has caused my to have a numb limb, as I have read so many other folks have. That just isn't what I want....not at all. Very scary.

Like I said...I have had increase in pain after the procedure, and then the gradual lowering of pain levels. My doc and the OR Nurses at the Hospital that he uses are WONDERFUL! They have figured out that one of the things that causes me LOTS of troubles and huge increases in pain after procedures in muscle spasms. So, I get a bag of robaxin started in my IV BEFORE the procedure to help out with that problem. It has worked wonders, I can tell you. I know that this might not work for everyone, as we are all different, and have different responses and whatnot, but once they started doing this, I started having even better effects from ALL of the procedures that I have done, rather it is an RFA or a regular Block. My "Normal" pain level is about 7.5-8. Once I get the full effect of the RFA my pain level has dropped as low as a 5!! Which made me VERY Happy indeed!

This is winding up pretty long...so I am going to wind it up. I hope that I have answered some of your questions? If you have more, please don't hesitate to ask. I will do my best to answer.....and I WILL try to keep it short. LOL

Take Care,
Jose


DianaA 01-02-2009 11:02 AM

I had RFA
 
Hi, I had an upper thoracic radiofrequency sympathectomy(ablation) done in 1991 by Dr. Harold Wilkerson at the University of Mass in Boston. I was fortunate. There were very few being done at that time. They use to crack a rib, puncture a lung, and the surgery was horrific before RF. I hate to tell you my results....no harm done but, no long term benefits. Now, having said that, it doesn't mean your results will be the same. I hope your outcome will be great. Let us know. Diana


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