Hi everyone,
i had the operation to reconstruct the knee on 8/18. (i broke it on the 4th or the 5th ) it was just as bad as i thought it would be. I have not been able to sit at the computer, or i would have gotten back sooner. The crps was greatly affected. My foot is on fire all of the time, the pain 5 times greater. I tried to get information about crps to the hospital before my visit. They did print out some info for the staff that would be taking care of me, i even had a nurse i knew from high school and her husband has had crps for 19 years. But i didn't want them to learn just for me, i wanted them to learn for everyone that goes to this hopsital with crps. The pain clinic has srarted back up the epidural blocks to try and calm down my foot. I'll talk later, can't sit here too long. Hope you guys are all well.


Love
sue k

Dear Sue -

And my heart aches to know that you had to bear the burden of the hospital's learning curve. And I am so very sorry to hear how much pain you are in.

I would therefore suggest that you just print this out and read it over in a more comfortable setting than at the computer.

As you know, there's a lot that can be thrown at an acute case of CRPS, up to and including low dose ketamine infusions if initiated within the first 12 weeks. And while we've both had this thing for many years, if spread after surgery is, in effect, an accte case on top of a chronic one, then I suspect that at least your most recently acquired burden should be resolvable.

The easy way to find out may be a relatively straitforward blood test for an inflammatory mediator/cytokine called Tumor Necrosis Factor-[Alpha] (TNF-a) and its "soluble Receptors I/II," where research to date indicates that the level of TNF antibodies are high in patients with acute CRPS, but drop down to the normal range by the time the CRPS is deemed "chronic." See, "Systemic inflammatory mediators in post-traumatic complex regional pain syndrome (CRPS I) - longitudinal investigations and differences to control groups," Schinkel C, Scherens A, Köller M, Roellecke G, Muhr G, Maier C, Eur J Med Res. 2009 Mar 17;14(3):130-5:

Abstract

OBJECTIVES: The Complex Regional Pain Syndrome I (CRPS I) is a disease that might affect an extremity after trauma or operation. The pathogenesis remains yet unclear. It has clinical signs of severe local inflammation as a result of an exaggerated inflammatory response but neurogenic dysregulation also contributes to it. Some studies investigated the role inflammatory mediators and cytokines; however, few longitudinal studies exist and control groups except healthy controls were not investigated yet.

METHODS: To get further insights into the role of systemic inflammatory mediators in CRPS I, we investigated a variety of pro-, anti-, or neuro-inflammatory mediators such as C-Reactive Protein (CRP), White Blood Cell Count (WBC), Interleukins 4, 6, 8, 10, 11, 12 (p70), Interferon gamma, Tumor-Necrosis-Factor alpha (TNF-a) and its soluble Receptors I/II, soluble Selectins (E,L,P), Substance-P (SP), and Calcitonin Gene-Related Peptide (CGRP) at different time points in venous blood from patients with acute (AC) and chronic (CC) CRPS I, patients with forearm fractures (FR), with neuralgia (NE), and from healthy volunteers (C).

RESULTS: No significant changes for serum parameters investigated in CRPS compared to control groups were found except for CC/C (CGRP p = 0.007), FR/C (CGRP p = 0.048) and AC/CC (IL-12 p = 0.02; TNFRI/II p = 0.01; SP p = 0.049). High interindividual variations were observed. No intra- or interindividual correlation of parameters with clinical course (e.g. chronification) or outcome was detectable.

CONCLUSION: Although clinically appearing as inflammation in acute stages, local rather than systemic inflammatory responses seem to be relevant in CRPS. Variable results from different studies might be explained by unpredictable intermittent release of mediators from local inflammatory processes into the blood combined with high interindividual variabilities. A clinically relevant difference to various control groups was not notable in this pilot study. Determination of systemic inflammatory parameters is not yet helpful in diagnostic and follow-up of CRPS I. [Emphasis added.]

PMID: 19380284 [PubMed - indexed for MEDLINE]
http://www.ncbi.nlm.nih.gov/pubmed/1...ubmed_RVDocSum

See also, "Neuropeptides, neurogenic inflammation and complex regional pain syndrome (CRPS)," Birklein F, Schmelz M, Neuroscience Letters 2008;437:199-202, full text at http://www.rsds.org/2/library/articl...in_Schmelz.pdf

The reason this total lay person is suggesting testing for TNF-a and its soluble Receptors I/II - as opposed to either "Substance P" or Interleukin 12 - is that, on the one hand, tests for both TNF-a and Substance P appear to be available from commercial medical labs while those for IL-12 seem a little harder to come by (based upon a few quick Internet searches), while at least according to the study abstract cited above (and I've been trying to get a copy of the study for some time, and may just have to email the authors to beg for a reprint), the level of statistical significance for the finding as to Substance P is not nearly as high as that of either TNF-a or IL-12. And in this regard, please note that the generally utalized test for ongoing inflammatory processes, that for "C-Reactive Proteins" has been shown to have no correllation with acute CRPS in the first instance, both in the above referenced study, and an earlier study by the same authors. "Inflammatory mediators are altered in the acute phase of posttraumatic complex regional pain syndrome," Schinkel C, Gaertner A, Zaspel J, Zedler S, Faist E, Schuermann M, Clin J Pain 2006 Mar-Apr;22(3):235-9.

So, if you can be tested for TNF-a and its soluble Receptors I/II, and those tests come back elevated, I would be willing to bet that at least part of your body is dealing with a fresh case of CRPS, which should respond to a range of treatments for acute CRPS: which is probably why your pain clinic has started you on blocks in the first place. That said, if the blocks don't do the trick, there are a few other therapies that offer promise, once again, so long as they are initiated within 12 weeks of the time of your date of injury/surgery.

In that regard, and for a nice discussion (at pp. 50 -53) as to why five day "sub-anesthetic" infusions of ketamine appear to work better in folks with acute as opposed to chronic CRPS, see, "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 full text at http://www.rsds.org/2/library/articl...ohr_Ploppa.pdf And for an intrigueing case report of the largely successful use of just two very small doses (1/10th of was was usually given to rheumatology patients) of the anti-TNF drug infliximab (Remicade) on a patients with acute CRPS, check out "Successful Intravenous Regional Block with Low-Dose Tumor Necrosis Factor-[Alpha] Antibody Infliximab for Treatment of Complex Regional Pain Syndrome 1," Bernateck M, Rolke R, Birklein F, Treede RD, Fink M, Karst M, Int Anesth Res Soc 2007;105(4):1148-1151, full text at http://www.rsds.org/2/library/articl...teck_Rolke.pdf

Finally, for an even better result on a 17 y.o. West Point cadet with a version of what Mslday has described as the current "gold standard" in Germany, note the very recent "A Unique Presentation of Complex Regional Pain Syndrome Type I Treated with a Continuous Sciatic Peripheral Nerve Block and Parenteral Ketamine Infusion: A Case Report," Everett A, Mclean B, Plunkett A, Buckenmaier C, Pain Medicine September 9, 2009 (in press) full text at http://www.rsds.org/2/library/articl...n_Plunkett.pdf

Sorry for going on, but I was trying to get this right.

hoping only for your speedy recovery,
Mike

sue k ,

I am so sorry that you have endured two painful traumatic events,piggybacked upon each other. You are in my thoughts and prayers.

hugs,
Dew

Sue,

I hope the RSD calms down, of course the surgery hasn't helped it one bit but you are now having to undergo the consequences of surgery and RSD and I am *so* sorry because it is terrible - I know. After my knee arthroscopy (wasn't even full fledged surgery), my entire leg turned black (this purple/grey/blackish color depending on how much time I was upright). I scared every nurse in sight, and more came in to actually see for themselves, then every time I was ordered to go straight back to bed and told to not put weight on it anymore. My RSD and the pain I had worsened much faster after that.

I hope everything at the pain clinic goes well.
Take your time to recover.

Did they do any kind of blocks before the surgery? Some hospitals don't know enough about RSD to maybe take precautions.

I go to a great hospital now that does know a lot about RSD but we have one in our area that doesn't know about anything much less RSD.

I hope the pain starts calming down for you soon.

Ada

Hi Ada,
The pain clinic had set a whole set of instrucions for this Doc to follow but he kept changing the date of the operation and pre-op appts. I was so stressed out from the pain and changes. the doc never got the instructions for the blocks to be done before the operation. Myself and the pain clinic were very upset. My RSD foot keeps sweling up and turning all kinds of colors. I'VE HAD ENOUGH!!!! Ican't wait till this is over.

Love Sue K

Dear Sue,

I am so sorry. They screwed up by not doing a block before your surgery. Now they've got TO FIX IT. Tomorrow is Monday, all the docs are in. CAN SOMEONE DO SOMETHING? Mike gave you the info on ketamine. Hospitals have that in inventory, can't you get some?

You are in my prayers. Take care of yourself. XOXOX Sandy

Hi Sue,
I am so sorry for the ordeal you are experiencing...and upset that it could have been prevented by following the protocol that was supposed to be in place for you! and as Sandy pointed out, now they must provide you with the utmost of attention and medical interventon to help you get through this.

Mike has provided a variety of teatment options that you can print out and bring to your medical team. It is to your benefit for the docs to realize that you are informed... If it is too overwhelming for you at this time, perhaps someone can speak for you and be there to support you..
Dear Sue, I am hoping for rapid relief for the pain, swelling, and the terrible burning in your foot..

Please look ahead to when the pain will subside and you'll be able to ride your scooter..we are all thinking of you
Hope4thebest

Hi everyone,
sorry its been a while. This operation thing has been a nightmare. The rsd has jumped to the other leg. My foot on the original side is so swollen, purple, red you name it. Its on fire. So far i've had 3 epidural blockes in 3 weeks. I've had enough. They raised the doses on my meds but it feeling that much better. I hope you all are having a good day.

Love
sue k

Dear Sue -

That is terrible news. I am so sorry the blocks haven't worked and that your pain is as bad as it is. (To be honest, I'm a little surprised the blocks apparently had no traction whatsoever.)

Just so sorry this monster has presented you with its full fury.

Mike

ps Any chance that you could arrange to be tested for "TNF-a and its soluble Receptors I/II "? (As outlined in my post of September 13th, above.) If it's positive, you have a compelling case to be started immediately on ketamine, either as an outpatient or on in-patient receiving "sub-anesthetic" doses. But remember, if the blood test comes back as positive - which would mean that you have a fresh inflamatory process under way - treatment should/must begin within 12 weeks of the time of your surgery. And if your doctors aren't comfortable with ketamine, there are others that are. And as mentioned before, a couple of "low-dose" blocks with an anti-TNF drug such as Infliximab (Remicade) may be another option. (See my last for the one citation I could pull; PubMed lists other articles apparently on point, but oddly none of them have abstracts. Let me know if you want them and I'll ask a friend to retrieve them through his university account.)