[duramjames]

I have had RSD for 15 years. I have tried nerve blocks radio frequency deadening of nerves spinal cord simulators. different drugs.pt etc. I know have new Dr. he started the 3 injections to see if I got relief. I did get moderate relief not lasting long. Now he has done the radiofrequency thermocoagulation or RFTC deaden the nerve. I have had some relieve but every now and then like 1 time last week and twice this week my pain in my foot came back twice as bad as before but it went away in about 15 min. Is this typical?Has anyone had this done what can I expect?

[Russell]

Hi James,
Can't help you out with RTFC stuff but just jumped in to welcome you to the forum. I've found relief in a cocktail of meds and that's all I'm gonna do.
I hope you find lasting relief...

[LIT LOVE]

I underwent a radiofrequency procedure years ago and it made my hypersensitivity much, much worse, and it never decreased. They are not commonly offered anymore. I would discourage anyone from undergoing this procedure and really question why your doc is still performing them.

http://www.rsdrx.com/crps_and_sympathectomy.htm

"RADIOFREQUENCY SYMPATHECTOMY

The most traumatic of all invasive treatments is Radiofrequency Sympathectomy (nerve ablation and block). It is done with a heat generating Radiofrequency electrode causing a boiling hot temperature at the target area which coagulates, destroys and kills the nerve fibers and nerve cells.

Because the Radiofrequency damage causes high temperature in the adjacent areas of the target, it also destroys the adjacent normal nerves causing a much larger lesion and scar formation with spread and aggravation of pain in a permanent fashion.

In CRPS the sympathetic system is dysfunctional rather than simply being hyperactive. The longer the disease is left untreated and the more surgical scars, the more dysfunctional the sympathetic system becomes. This is the reason for practically 100% failure of treating CRPS with sympathectomy, radiofrequency, and chemical sympathectomy with phenol, alcohol, etc."

[duramjames]

Originally Posted by LIT LOVE

I underwent a radiofrequency procedure years ago and it made my hypersensitivity much, much worse, and it never decreased. They are not commonly offered anymore. I would discourage anyone from undergoing this procedure and really question why your doc is still performing them.



"RADIOFREQUENCY SYMPATHECTOMY

The most traumatic of all invasive treatments is Radiofrequency Sympathectomy (nerve ablation and block). It is done with a heat generating Radiofrequency electrode causing a boiling hot temperature at the target area which coagulates, destroys and kills the nerve fibers and nerve cells.

Because the Radiofrequency damage causes high temperature in the adjacent areas of the target, it also destroys the adjacent normal nerves causing a much larger lesion and scar formation with spread and aggravation of pain in a permanent fashion.

In CRPS the sympathetic system is dysfunctional rather than simply being hyperactive. The longer the disease is left untreated and the more surgical scars, the more dysfunctional the sympathetic system becomes. This is the reason for practically 100% failure of treating CRPS with sympathectomy, radiofrequency, and chemical sympathectomy with phenol, alcohol, etc."

I told him I had the procedure years ago and it did not help. He said that they had a new technique that works for relief up to 6 months. The day after everything seemed a lot better, and for the first week I thought it was going to work now these breakthrough episodes are getting more intense and closer together. Is that the nerve regenerating or the scarring you mention.I think this is the 3rd RFTC I have had done. I wish I would have asked about this before but they always make me feel that if I don't try everything they want to do I don't want to get better. That I am just there for the drugs that don't work anyway. I am tired of all this my friends think I am nuts my family is scared of me etc.etc. Everyone who has this crap goes through the same thing. I really appreciate your post. I am scared to tell him it did not work. I think he will throw me out. My last pain Doctor did a epidural block that hit the spinal cord giving me a headache that landed me in the hospital for 7 days. When I get out he says I had a bad reaction to the procedure and would have to find a new Doctor. I am scared to tell them what works and what hurts.Thank you for the article it helped and thank you for taking time to let me know more about this disease.You would think after 15 years I would know more.[/COLOR][/COLOR]

[LIT LOVE]

I had my RF procedure shortly after being diagnosed and it was described as if it was another stellate ganglion block that would just have longer lasting results. The doc ran the most esteemed pain clinic in my county. I've read that they do seem to work for those with issues like back pain.

My doc refused to acknowledge that it made me worse. Even though: I had a hard time even being driving by someone else and when we'd hit a pothole it was agony. I couldn't be in the car when someone else closed their door. Issues with fabric and wind got 10x worse. I could no longer watch commercial tv due to the flashing lights and loud sounds. My pt actually called my primary doc for me because it scared her how bad I had gotten in a short time, and that that they seemed to not be treating me with any urgency whatsoever.

Whenever I met new docs during consultations--at least six over the span of about two years, they all claimed it couldn't have made me worse, and that it was a coincidence. (Or they gave me the condescending "Is she malingering?" look.) And now that I think about it, it started out feeling like an electrical current was in my limb and the pain kept escalating, and the hypersensitivity kept increasing. My insomnia got insanely bad. I was referred to a pain psych doc and I tried out several meds at the time.

A few years later I met a doc I stayed with for several years. And he acknowledged that the procedure could do what I said and that the other doc should not have performed it. THEN I ran across Hooshmand's explanation, where I got my second confirmation.

It is difficult to find a doc willing to write scripts for certain meds, but if he's still performing RF procedures on RSD/CRPS patients, you have to question if he's remotely keeping up with newer treatments and medication options? You might want to see if you can find a better doc. If you start a thread asking for a referral to a doc in your neck of the woods, you might find you have better options available.

Welcome to NT, btw!

[Littlepaw]

Hi and Welcome to the forum,

I am so so sorry to hear what is happening with you. I fall in the 'have a nerve injury from surgical procedure' category and can really identify with how badly doctors can mess us up. Then of course we have to find others who can help us. So tedious and frustrating.

On your procedure - check with the doctors office and find out it if was "pulsed" or traditional. Pulsed radiofrequency is a "newer" technique and maybe, hopefully is what they meant when they said a new technique. The 6 month relief window makes me think that may be the case. There is a big difference in how high the tissue is heated and how far around the probe the heat goes. If your doctor used pulsed radiofrequency it causes much less damage to adjacent tissue and to the nerve tissue itself which is why it is not a "permanent" treatment. It may be that right now you have bruised aggravated nerve that will hopefully calm down. Do they have you on any neuro modulating drugs? This might be a good time for something like neurontin or a TCA if you are not already on one of those or a good time to temporarily up the dose until things can settle.

I know this is a totally unrelated procedure but after my revision nerve surgery I had an unhappy nerve that for a few weeks would go into a paroxysm of pain spontaneously and then just quit. I had periodic episodes like that for a while and then it stopped. I am hoping for you this is a similar sort of aggravation that will resolve. I remember well how frightening and uncomfortable it was.

I am sending Healing Love your way and pray you find relief soon
Littlepaw

[duramjames]

Originally Posted by LIT LOVE

I had my RF procedure shortly after being diagnosed and it was described as if it was another stellate ganglion block that would just have longer lasting results. The doc ran the most esteemed pain clinic in my county. I've read that they do seem to work for those with issues like back pain.

My doc refused to acknowledge that it made me worse. Even though: I had a hard time even being driving by someone else and when we'd hit a pothole it was agony. I couldn't be in the car when someone else closed their door. Issues with fabric and wind got 10x worse. I could no longer watch commercial tv due to the flashing lights and loud sounds. My pt actually called my primary doc for me because it scared her how bad I had gotten in a short time, and that that they seemed to not be treating me with any urgency whatsoever.

Whenever I met new docs during consultations--at least six over the span of about two years, they all claimed it couldn't have made me worse, and that it was a coincidence. (Or they gave me the condescending "Is she malingering?" look.) And now that I think about it, it started out feeling like an electrical current was in my limb and the pain kept escalating, and the hypersensitivity kept increasing. My insomnia got insanely bad. I was referred to a pain psych doc and I tried out several meds at the time.

A few years later I met a doc I stayed with for several years. And he acknowledged that the procedure could do what I said and that the other doc should not have performed it. THEN I ran across Hooshmand's explanation, where I got my second confirmation.

It is difficult to find a doc willing to write scripts for certain meds, but if he's still performing RF procedures on RSD/CRPS patients, you have to question if he's remotely keeping up with newer treatments and medication options? You might want to see if you can find a better doc. If you start a thread asking for a referral to a doc in your neck of the woods, you might find you have better options available.

Welcome to NT, btw!

This is my new doctor. The other one put me in hospital for 7 days with spinal headache from his procedure then kicked me out because I went to hospital.

[duramjames]

Originally Posted by Littlepaw

Hi and Welcome to the forum,

I am so so sorry to hear what is happening with you. I fall in the 'have a nerve injury from surgical procedure' category and can really identify with how badly doctors can mess us up. Then of course we have to find others who can help us. So tedious and frustrating.

On your procedure - check with the doctors office and find out it if was "pulsed" or traditional. Pulsed radiofrequency is a "newer" technique and maybe, hopefully is what they meant when they said a new technique. The 6 month relief window makes me think that may be the case. There is a big difference in how high the tissue is heated and how far around the probe the heat goes. If your doctor used pulsed radiofrequency it causes much less damage to adjacent tissue and to the nerve tissue itself which is why it is not a "permanent" treatment. It may be that right now you have bruised aggravated nerve that will hopefully calm down. Do they have you on any neuro modulating drugs? This might be a good time for something like neurontin or a TCA if you are not already on one of those or a good time to temporarily up the dose until things can settle.

I know this is a totally unrelated procedure but after my revision nerve surgery I had an unhappy nerve that for a few weeks would go into a paroxysm of pain spontaneously and then just quit. I had periodic episodes like that for a while and then it stopped. I am hoping for you this is a similar sort of aggravation that will resolve. I remember well how frightening and uncomfortable it was.

I am sending Healing Love your way and pray you find relief soon
Littlepaw

Thank you for the healing love. And prayer. I think he called it pulsed I will find out . Yes I am on neurontin. It seems to have made my normal pain better but the breakthrough pain is just awful I have had RSD in my foot for 15 years and this pain feels like my foot is going to explode. I am thankful for the relieve I got from the normal pain and maybe it is a bruise and this breakthrough stuff will quit. I am glad I have found this group. it helps to talk sometimes.