Hello everyone,

After a discussion with my doctor yesterday morning I went through with the R.F. injection. The procedure itself was horrific and extremely painful (cried through the whole thing and for about an hour after) and today I find myself in extreme discomfort. My back feels like I was beat with a baseball bat and my nerves in my legs are extremely irritated. I will not know the results until 4-6 weeks from the procedure and statistically (and since I'm an accountant I love my numbers) there is 20% chance of this working. The 20% may sound discouraging but that’s a 1 out of 5 patients have relief and I'm hoping I'm that I fall in the 20%. I have been fighting this for a couple years so I'm not naive but I am still hopeful.
Per other discussions with my doctor yesterday, there are other options but they are all extremely invasive so I don’t think I will be taking that path. For me, it’s either this works and I can cut down on my medicine or it doesn’t work and I will be stuck with my medicine for a long time. I will keep everyone posted as to any progress or lack of progress. I hope everyone is doing well.

Sarah

Dear Sarah -

So very sorry you had such a miserable time yesterday.

I am, however, equally troubled by your doctor's suggestions that the only other techniques are "more invasive." This sounds 15 - 20 years out of date, where there exciting research is being done with medications.

If and when you have the energy, I would urge you to read "Outpatient intravenous ketamine for the treatment of complex regional pain syndrome: A double-blind placebo controlled study," Schwartzman RJ, Alexander GM, Grothusen JR, Paylor T, Reichenberger E, Perreault M, Pain 2009 (in press), FREE FULL TEXT at http://www.rsds.org/2/library/articl..._Pain2009.pdf:

ABSTRACT
Complex regional pain syndrome (CRPS) is a severe chronic pain condition that most often develops following trauma. The pathophysiology of CRPS is not known but both clinical and experimental evidence demonstrate the important of the NMDA receptor and glial activation in its induction and maintenance. Ketamine is the most potent clinically available safe NMDA antagonist that has a well established role in the treatment of acute and chronic pain. This randomized double-blind placebo controlled trial was designed to evaluate the effectiveness of intravenous ketamine in the treatment of CRPS. Before treatment, after informed consent was obtained, each subject was randomized into a ketamine or a placebo infusion group. Study subjects were evaluated for at least 2 weeks prior to treatment and for 3 months following treatment. All subjects were infused intravenously with normal saline with or without ketamine for 4 h (25 ml/h) daily for 10 days. The maximum ketamine infusion rate was 0.35 mg/kg/h, not to exceed 25 mg/h over a 4 h period. Subjects in both the ketamine and placebo groups were administered clonidine and versed. This study showed that intravenous ketamine administered in an outpatient setting resulted in statistically significant (p < 0.05) reductions in many pain parameters. It also showed that subjects in our placebo group demonstrated no treatment effect in any parameter. The results of this study warrant a larger randomized placebo controlled trial using higher doses of ketamine and a longer follow-up period.

(c) 2009 International Association for the Study of Pain. Published by Elsevier B.V. All rights reserved.

What's so significant about these results, as you can see reading the study, the study, is that no effort was made to limit the study participants to individuals who had been symptomatic for six months or less at the time of treatment: a group that is far more likely to benefit from any number of therapies than are those who have had this condition longer. And the out-patient treatment used by Dr. Schwartzman in this study is being implemented at a number of centers around the country. (I just can't have it because of pre-existing glaucoma.)

And on a different but also promising tract, please read "An Effective Treatment of Severe Complex Regional Pain Syndrome Type 1 in a Child Using High Doses of Intrathecal Ziconotide (Letter to the Editor)," Stanton-Hicks MD, Kapural L, J Pain Symptom Management 2006;6:509-510, FREE FULL TEXT (and a couple of amazing photos) at http://www.rsds.org/2/library/articl...32_6_pg509.pdf, which was followed more recently by "Intrathecal ziconotide for complex regional pain syndrome: seven case reports," Kapural L, Lokey K, Leong MS, Fiekowsky S, Stanton-Hicks M, Sapienza-Crawford AJ, Webster LR, Pain Practioner 2009 Jul-Aug;9(4):296-303:

ABSTRACT
Ziconotide is a nonopioid analgesic currently indicated as monotherapy, but frequently used in combination with opioids, for the management of severe chronic pain in patients for whom intrathecal (IT) therapy is warranted and who are intolerant of, or whose pain is, refractory to other treatments. There is a paucity of information regarding ziconotide use in patients with complex regional pain syndrome (CRPS). Seven cases in which IT ziconotide was used in patients with CRPS were analyzed. All patients (4 male, 3 female; age range, 14 to 52 years) had experienced inadequate pain relief with multiple conventional and interventional treatments. Three patients received ziconotide monotherapy exclusively; 4 patients received ziconotide monotherapy initially, then combination IT therapy. The mean ziconotide dose was 5.2 mcg/d (range, 0.5 to 13 mcg/d) at initiation and 24.7 mcg/d (range, 0.06 to 146 mcg/d) at the last available assessment. The mean duration of ziconotide therapy was 3.1 years (range, 26 days to 8 years). At ziconotide initiation, the mean visual analog scale (VAS) score was 89.3 mm (range, 75 to 100 mm); VAS scores decreased by a mean of 47.5% (range, 5% to 100%) at last assessment. Of the 5 patients who experienced substantial improvement in pain, edema, skin abnormalities, and/or mobility with ziconotide therapy, 2 have discontinued ziconotide and are pain free. Another patient experienced marked reversal of both edema and advanced skin trophic changes. Adverse events included urinary retention, depression, anxiety, and hallucinations. Adverse events generally resolved spontaneously, with treatment, or with ziconotide discontinuation/dose reduction. Although further studies are required, ziconotide holds promise as an effective treatment for CRPS.

PMID: 19500276 [PubMed - indexed for MEDLINE]

http://www.ncbi.nlm.nih.gov/pubmed/1...ubmed_RVDocSum

And note that the reported success rates in the foregoing studies were considerably better than the 1:5 you were quoted.

I apologize for laying all this on you. I just want you to know that there are kinder/gentler options out therebefore you return to your local butcher: even if he's on the faculty of a very good medical school, he's living in the past. So what I am suggesting is that before seeking further treatments from the same fellow, you seek another opinion. Since you live in Illinois, I would suggest the Cleveland Clinic, and specifically Michael Stanton-Hicks, M.D. Where he is now on senior status, I have been told by his department that he only sees patients with established cases of CRPS and then will do so only after first reviewing their medical records. Here's his directory page at the Cleveland Clinic http://my.clevelandclinic.org/staff_...taff_1175.aspx I believe the number for reaching his secretary is (216) 444-7246.

Finally, here's his departmental homepage http://my.clevelandclinic.org/anesth...t/default.aspx

And once again, I am so sorry for what you are going through.

Mike

It has been over a week since I had the RF injection done and I thought I would tell everyone how it is going....
Since the procedure I have had an increase in my leg pain (RSD in in both legs from hip to toes) and a lot of back pain and I usually dont have any back pain.
I have also had an increase in muscle spasms and my right leg feels tired when walking.
I have yet to see any benefit but the doctor said it will take from 4-6 weeks to get the full benefits.
As for week one, I have noted no benefits. I will let everyone know how week two goes... (I pray it goes better than last week.)

It has been two long weeks since I have had the RF injection. The back pain has finally decreased but it took 12 days for that pain to go away.
I still am experiencing a large increase in my RSD pain. The pain has been unbearable, to the point of wanting to go to the hospital but I know there is nothing the hospital can do so I find myself just waiting for this nightmare to go away.
My toes have gone numb on the right side (The side that they treated) and I have extreme muscle fatigue in the right leg.
At this point in time, I would not recommend this treatment, in fact I would say stay away from any doctor that recommends it.

Still no benefits and lots of extra pain. =(

Hang in there. Sounds like absolute torture instead of treatment. I know this isn't a pleasant time for you, but if you can't stand the pain please go back to the doctor who gave you the injections and tell him/her that you have increased pain. I don't think more pain is what s/he was going for. It's the wrong outcome and you need to tell the doctor.

Swatgen27,

I'm curious to know how things are going for you now. You should be about 6 weeks out from your RF, any relief? any spreading of RSD?

Reason I am so curious, my doctor is wanting to do this procedure to me in a couple of weeks. I have researched and researched and I know the risks vs. the benefits very well now. The pain of the procedure itself is not what bothers me at all. And I know that the RF is only a temporary pain relief (but 6 months to 2 years is a long time) and the pain will come back if it goes away at all. The only thing that I am so worried about is the spreading. The last thing I want is to have this uncontrollable pain in another part of my body.

Anyone's opinion or advice is welcome!!!

I am new on this site - not sure where to post, but I have questions on this procedure. My husband had radiofrequency ablitation done on his neck 2 weeks ago, C2 to C5. He has been in so much pain it has been a nightmare. The first 3 days he had spasms, those have subsided, but still his scalp and neck are so tender he can hardly sleep, and cannot fully turn his head because of the pain. Says his scalp feels as if it is on fire. Don't know what we will do if this continues. Anyone know of poor outcomes from this procedure. Dr.'s comments were ' ... he got a good burn... ' Nice comment from him.

I had the Radio Frequency injection done at least two months ago and I also had the same issue with the RF causing even more pain. Turns out the RF procedure can be such a shock to the body that it can set off every nerve in your body and that is what happened to me. I was actually throwing up the pain got so bad. The Dr told me that in rare cases, the RF causes every nerve in the effrected area to become inflamed, which causes the extra pain. They said that to treat this issue, I should go on steriods but instead we increased my pain meds because the pain never went back down. My pain levels have remained increased, the procedure was extremely painful, and now I have back pain that wont seem to go away. My advice, DONT DO THIS PROCEDURE!!! PLEASE, DONT MAKE THE SAME MISTAKE I MADE. If we all learn from my mistake than maybe I wont regret getting the procedure done and Maria, I'm sorry to say that I think you two will have to do damage control.

I really dont have anything else to say about this topic but I'm trying to upload my picture and i wanted to see if it worked so I'm doing a test posting. Sometimes I can be so weird...

Its bad enough to have ADD, DEPRESSION, and PANIC / ANXIETY disorders which are being treated with Class II medications, but with Chronic Transient Pain added to this noxious brew I should be on SSD. Since July 19 of last year I've been getting various treatments at a Pain Management facility here in Phoenix, AZ. Pain meds, epidurals to the neck, and now this Frankenstein RF. I thought it was just me, but after reading these posts I am obviously NOT ALONE in the relentless daily pain post-RF. Over a month and still in pain. Saw my PM doc the other day (cancelled next RF to discuss this horrible treatment) and he's used to seeing me smiling and maybe talking too much to the staff. That's all my meds, previous six needle epidurals, my daily laps in the pool and stretching talking. Then it all went to hell in a garbage bag with RF. Pain meds not as effective: he did not increase them, I did not request. Thought I made it clear I wanted previous injections. Left with refills and new appointment for next RF???? Too late, discuss at that appointment. If he insists, I want increased pain meds. Missed gigs (am a musician), interviews for jobs, church. I'm 50 (some might need to know but I don't even look it, not even close) and 20 years on opiates. They work so I'm all for 'em, but I refuse to deal with pain above and beyond my normal level. F!*?! RF.