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 02-11-2009, 03:22 PM #11
mamahiggs mamahiggs is offline
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Quote:
Originally Posted by Joselita View Post
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
Hi Jose,
I am curious about Radiofrequency nerve ablation for two reasons:
1. my husband is a paraplegic and his doctor recomended we research it for his referred pain and spasms.
[edited per NT Guidelines regarding research]
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Old 03-29-2009, 08:08 PM #12
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Default radiofrequency nerve ablation

I had the nerve ablation done almost a year ago, my doctor made it clear that for the first six weeks i would be in more pain, i honestly didnt think that i could have worse pain but sure enough for about 6 weeks it was the worst i ever felt. I did hower get some relief from the nerve ablation. But now am having the same facet pain and pain down my leg again, even after several shots of cortisone directly in the facet joint. My problem is that my doctor is offering to do this nerve ablation again, and i am scared i have to work, i have children, and why is i keep getting the same treatment even after almost 2 years, is there not any other treatments. And i asked my doctor if i should get another mri since he is going by one that is 2 years old, he said no not needed. Help should i get a second opinion, or get this second ablation to see if it helps longer. Tired of being in pain

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Old 03-30-2009, 02:19 PM #13
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I would definitely get a 2nd opinion!! Nerve ablations do not help anything and there are other treatments available depending on what you can manage. There is lidocaine infusion, hbot to name 2 that's in my head. :-) Insurance doesn't pay for hbot unless it's for an "approved" condition. From what I've heard about the infusions, it depends on the insurance company. A couple of people who posted about it said they were denied then appealed and the insurance did pay for it. Others had their's pay for it with no problem.

Going by an MRI that is not 2 years old is NOT a good thing! Who knows what changes may or may not have taken place. Find another doctor because this one seems, at least to me, is not going to help you at all.

Hugs,

Karen
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Old 03-15-2012, 08:23 PM #14
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Quote:
Originally Posted by lisalovesbilly View Post
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
i had one tew weeks ago, having increased pain in back and legs, going back tomorrow ill let you know what doc says. roxie
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Old 03-16-2012, 09:22 PM #15
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Hi Lisa,
I had to reply to your saying "From what I understand, RSD is not hereditary." Unfortunately, RSD is hereditary BUT just like any other disease we all have the certain RSD gene in our body but it may or may not be triggered by a nerve damage to get the outcome of RSD. I do not have anyone in my entire family with RSD...aren't I the lucky one to get it lol!! I guess with genes it is just the luck of the draw. Let's hope our sons NEVER have to go through what we go through with RSD. It affects everything in your entire life and our poor children have already been through so much with their parent having RSD. Well good luck in your healing journey.
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Old 03-18-2012, 08:38 PM #16
Lisa in Ohio Lisa in Ohio is offline
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Hi Lisa, I haven't checked in for quite a while, wish I had since I have had this procedure done. For the first couple of weeks it did seem like I had more pain, then things settled down. I did get some relief but not full coverage for my shoulder. I had another facet joint injection and had complete relief in the shoulder area. I am now waiting for insurance approval for the second ablation, and let me tell you it can't come soon enough!! My pain doc was hopeful that if we "stacked" procedures it would give me better relief i the shoulder. Sending you prayers and blessings, Another Lisa
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