NeuroTalk Support Groups - Ketamine Infusions?

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- Reflex Sympathetic Dystrophy (RSD and CRPS) (https://www.neurotalk.org/reflex-sympathetic-dystrophy-rsd-and-crps-/)

- - Ketamine Infusions? (https://www.neurotalk.org/reflex-sympathetic-dystrophy-rsd-and-crps-/103849-ketamine-infusions.html)

Hi Mike,

You are such a great wealth of knowledge. This is very exciting, due to the fact that I am going to have a fight with my insurance company in regards to my daughters infusions. I had to pay out of pocket. I am going to print this and fax it right over to them. You should start this as a new threat. I think more people will see it. Again, thank you for always researching ...You Rock! :)

Sandy

Quote:

Originally Posted by fmichael (Post 574434)

Hi. The insurance situation for ketamine may be on it's way to getting better.

On September 22nd, PAIN the most important journal in the field, anywhere in the world, electronically published a forthcoming article: 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 Sep 22. [Epub ahead of print] a full free text copy of which is now available on the RSDSA Medical Article Achieve page at http://www.rsds.org/2/library/articl...n_Pain2009.pdf The abstract follows:

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 3months following treatment. All subjects were infused intravenously with normal saline with or without ketamine for 4h (25ml/h) daily for 10days. The maximum ketamine infusion rate was 0.35mg/kg/h, not to exceed 25mg/h over a 4h 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.

PMID: 19783371 [PubMed - as supplied by publisher]

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

While it's a small study, finishing up with only 19 participants, its importance cannot be overstated. First, by giving Clonidine and Versed (Midazolam) to all participants, whether they were receiving ketamine or in the control group, were, in the words of the conclusion, "positive placebos" that effected "blinding" on the part of all participants. This it becomes, unbelievably, the first double blinded placebo controlled study of intravenous ketamine in the treatment of CRPS. Granted, one of acknowledged the limitations of the study was its small size, but the robust nature of the results may be enough to secure NIH grants for larger studies. Studies from which WC carriers will hopefully find no escape.

Most surprisingly, the results of the study were obtained from a population of CRPS patients who had been ill for at least six months, and some much longer:

There were no significant differences between those patients with a shorter duration of CRPS (11 patients with an average length of illness of 2.6 years and a range of 0.8–4.2 years) and longstanding patients (8 patients with an average length of illness of 12.2 years and a range of 6.8–20 years).

Although perhaps at the behest of the reviewers this result is qualified in the conclusion, it should be noted how this is seemingly at variance with a small study undertaken by his German colleagues on which Dr. Schwartzman was listed as the senior author, and in particular the lengthy discussion section at the end of the article. Kiefer RT, Rohr P, Ploppa A, et al, A Pilot Open-Label Study of the Efficacy of Subanesthetic Isometric S(+)-Ketamine in Refractory CRPS Patients, Pain Med. 2008;9(1):44-54 (among 4 female patients with mean duration of CRPS of 58 ± 20 months, subanesthetic S(+)- ketamine showed no reduction of pain and effected no change in thermo- and mechanical detection or pain thresholds), full text at http://www.rsds.org/2/library/articl...ohr_Ploppa.pdf

My only disappointment in the new article is that the study design carried over an exclusion criteria for glaucoma from the coma treatments, which made sense in that context where one's eyes apparently "bug out" during the coma, and the doctors feel that they have no means for controlling eye pressures during that time, but it's hard to see how the same rationale applies to sub-anesthetic out-patient infusions. (An issue that forever grabbed my attention where I had already purchased - on the last day anything other than full-fare coach prices were available - non-refundable tickets to Germany, before being definitively advised that the exclusion applied even to well controlled "open angle" glaucoma: I can still recall where exactly my wife and I were in our old bedroom as the email came through from Terry Paylor, following her receipt of an email from Saarbrücken.) But enough of that.

The new article is wonderful and the study design is tight. It looks as though all of Dr. Schwartzman's years of toil in the ketamine vineyards may be on the verge of bearing fruit in the manner in which CRPS patients can be treated across North America.

Mike

Dear Mike,

You are awesome. Thanks for your efforts on everyone's behalf here on the board. We are so fortunate to have you with us.

I am so sorry regarding your aborted trip to Germany. I can't even fathom your disappointment. Please don't ever, ever give up. I assume you've investigated the requirements for the Mexico coma and they are the same?...

XOXOX Sandy

Quote:

Originally Posted by SandyRI (Post 574746)

Dear Sandy -

Can I start with aw shucks . . . ? Truth be told, I've just been doing this for a while now, that and navigation PubMed, while not exactly the same in terms of it's search logic, bears a lot of resemblance to Lexis, on which I spent close to 25 years doing legal research, all too often at 4:00 am until I could almost literally do it in my sleep (the writing was another matter). So augmented with a few good texts to fill in the gaps and friends who can pull article gratis through their university accounts, it's remarkably easiy to be a one man band.

As far as Mexico is concerned, if there is indeed no way to reliably check interoccular pressures while your eyes are bulging out for five days, that's a real concern. My dad went blind from glaucoma, I don't intend to follow suit if I can avoid it. Then too, I didn't feel that my CRPS was "bad enough" to take the risks of the coma therapy, where I was sill able to walk around a bit. That is until until issues arose in the last few weeks regarding possible "small vessel ischemic deep what mattter disease" in my brain, following a brain MRI that was done for totally unrelated reasons, and then, exactly a month later I was hospitalized over night on a stroke watch following a TIA, only to learn a few days later that - contrary to the norm - my neurovascular issues had nothing to do with the usual cause (hardening of the arteries) and possibly everything to do with something nonatheroscleratic in origin, along the lines of what CRPS has done to the vasculature in my arms even though the pain is centered in my feet, such as either the simple constriction of the blood vessels due to sympathetic overactivation or something as complicated as "arterial abnormalities characterized by an overall loss of PGP-positive innervation coupled with hypertrophic, multi-laminated vascular walls." See, Albrecht PH, Hines S, Eisenberg E, et al, Pathologic alterations of cutaneous innervation and vasculature in affected limbs from patients with complex regional pain syndrome, Pain 2006;120:244-266, 259-263, full text with numerous colored slides at http://www.rsds.org/2/library/articl..._PAIN%2006.pdf

If the results of one more study, which I'm waiting for this week, definitively confirm the diagnosis of small vessel disease, I will be considerably more inclined to pursue aggressive therapies that may be shown to reverse (and not simply ameliorate) the vascular changes associated with CRPS. The alternative is not being able to have surgery on anything other than my eyes, where I'm told there are no blood vessels, because to do so would mean going off Plavix - an antiplatelet drug which I've been on since I was fitted with a coronary stent in 2005, that works by helping to prevent blood clots - which would greatly increase my risk of a stroke, where I've already apparently had a TIA while on the stuff. (So much for taking care of that hernia.) Then too there's wanting to stop the progress of the small vessel disease before it results in (further) cognitive decline. As in, ask me about my increasing level of disorganization . . .

So yes, consider me motivated.

Mike

all's well that ends well

I am pleased to report a change in my circumstances, which may mean that I don't have any vascular issues involving the brain after all, notwithstanding a recent and quite definative MRI interpretation to the contrary, given by USC University Hospital on August 18, 2009 and confirmed a month later at a community hospital, where I was on 24 hour hold following an apparent TIA.

At my request, the imaging center where I had a complete brain workup following an episode of syncope in January, 2007 [MRI of brain and cervical spine (w/ and w/o constrast + MRA], just faxed directly to me the "Comparison Report: MRI Brain from USC Medical Center 8/18/09; Tarzana Providence Medical Center 9/18/09," reviewed and interptreted by a gentleman whom I'm advised is one of the most seasoned neuroradiologists in Los Angeles, the relevant language of which reads as follows:

ADDENDUM: On the study done at Landmark Imaging 1/26/09 [sic: should be 1/26/07], there are a few tiny foci of increased signal on FLAIR sequences, which are likely benign findings, possibly representing an atypical appearance of a perivascular space. On the two subsequent studies done in 2009, there is no change in the appearance of the brain or any finding when compared to the earlier study done at [his imaging center].

Subject to correction on this score, it's my understanding that this may mean goodbye "Small Vessel Ischemic White Matter Disease!"

Mike

Quote:

Originally Posted by fmichael (Post 575184)

ADDENDUM: On the study done at Landmark Imaging 1/26/09 [sic: should be 1/26/07], there are a few tiny foci of increased signal on FLAIR sequences, which are likely benign findings, possibly representing an atypical appearance of a perivascular space. On the two subsequent studies done in 2009, there is no change in the appearance of the brain or any finding when compared to the earlier study done at [his imaging center].

Subject to correction on this score, it's my understanding that this may mean goodbye "Small Vessel Ischemic White Matter Disease!"

Mike

Hey --

Have to say I became rather depressed after reading your first report. Of course, I am equally delighted for you with your next findings.

Keep well. You're much relied upon around here.

-- Dennis

Does anyone know if the Vet Admin does these and if so which one. At this point I'd do just about anything to have even a part of my life back. I have been dx's with a variety of painful conditions including TOS, RSD, CPS, DDD and more. At this point I don't even know why my husband stays with me. I'm not a tenth of the person I used to be and financially we're drowning.

Quote:

Originally Posted by ColoVet (Post 575270)

Hello, and greetings!

By way of a direct answer to your question, after spending several hours conducting online searches, I don't know of any VA facilities currently administering ketamine as part of their pain treatment programs. That said, I may have come up with some useful information. To begin with, after reading your post, I started cruising through the webpage of the VA's Palo Alto facility, which is affiliated with Stanford and produces a large amount of very sophisticated research on pain topics. http://www.palo-alto.med.va.gov/researchpa.asp Unfortunately, that facility doesn't appear to even have so much as a pain clinic. I then went national, with somewhat better results. Here is the homepage for VHA Pain Management: http://www1.va.gov/Pain_Management/ As you can see, right at the top it links to a page on "Managing Chronic Pain: A Cognitive-Behavioral Therapy Approach" which is never encouraging when you are looking for medical interventions.

Perhaps the most interesting page is under the heading of Administrative Resources at http://www1.va.gov/Pain_Management/page.cfm?pg=42 If you open the page and look the articles entitled "James A. Haley (Tampa) VA Chronic Pain Rehabilitation Program Policy" and "VHA Pain Management Strategy Overview," you'll see that pain management at the VA appears to be very much of a work in progress, which is really sad, especially compared to the leadership Walter Reed has taken under the direction of Col. (Dr.) Chester C. Buckenmaier III, Chief of Army Regional Anesthesia and Acute Pain Management Initiative. By way of example:

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 Med. 2009 Sep;10(6):1136-9. Epub 2009 Sep 9. Free full text at http://www.rsds.org/2/library/articl...n_Plunkett.pdf

Walter Reed Army Medical Center-Army Regional Anesthesia & Pain Medicine, Washington, DC 20307, USA.

OBJECTIVE: To successfully treat a patient with complex regional pain syndrome, refractory to standard therapy, to enable a rapid and full return to professional duties. SETTING: This case report describes the rapid resolution of an unusual presentation of complex regional pain syndrome type I after four days of treatment with a continuous sciatic peripheral nerve block and a concomitant parenteral ketamine infusion. The patient [a first year West Point Cadet] was initially diagnosed with complex regional pain syndrome (CRPS) I of the right lower extremity following an ankle inversion injury. Oral medication with naproxen and gabapentin, as well as desensitization therapy, failed to provide any relief of her symptoms. She was referred to the interventional pain management clinic. A lumbar sympathetic block failed to provide any relief. The patient was diagnosed with CRPS I and was admitted for treatment with a continuous peripheral nerve block and parenteral ketamine. CONCLUSION: This case suggests therapeutic benefit from aggressive treatment of both the peripheral and central components of CRPS.

PMID: 19744217 [PubMed - in process]

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

But as to the VA, right now, your best chance may be in taking advantage of the list provided under the heading "VISN Pain Management Point of Contact Information" towards the end of the Administrative Resources page and just start calling some of the people listed. The one that sticks out, just because he appears to have all the right credentials, is:

Amr Zidan, MD
Anesthesiology and Pain Management
Chief, Pain Management
4500 S. Lancaster Rd
Dallas, TX 75216

214-857-0384
Pager: 214-759-2023
Amr.Zidan@va.gov

Alternatively, if you would be more comfortable calling anyone else on the list to begin with, then by all means do so.

I would call, begin by saying that you got his or her name off of the list of contact persons on the VHA Pain Management website, and explain that you are a vet with confirmed diagnoses of TOS, RSD, CPS, DDD etc. Then, briefly describe the failure of your treatments to date, and explain that you understand Col. Buckenmaier at Walter Reed has recently published work on the use of ketamine in the treatment of CRPS (aka RSD) and you would very much like to know where (or when) in his understanding the VA will offer ketamine therapies as well.

For that matter, you may wish to inquire as to what facilities have any expertise in dealing with RSD & TOS, where, just based upon the headings under "Clinical Practice Guidelines" also on the Administrative Resources page, pain management treatments at VA facilities appear to be focussed pretty much on cancer, low back pain and the like. (Please note that although the titles remain, the articles under the sub-heading "VA OPQ Clinical Practice Guidelines pain services" are no longer available.) To put it generously, references to RSD/CRPS are few and far between. However, I have to confess that the VA's latest word on the treatment of chronic pain isn't particularly encouraging. From the VA's National Center for PTSD, check out a document I accessed directly through the VA's search engine (on a search for "reflex sympathetic"), "The Experience of Chronic Pain and PTSD: A Guide for Health Care Providers," Lorie T. DeCarvalho, Ph.D, August 20, 2009, which reads in part as follows:

What is the experience of chronic pain like physically?

There are many forms of chronic pain, including: pain felt in the low back (most pervasive or common), the cervical area, the mouth and face, the temporomandibular joint (TMJ), the pelvis, or the head (e.g., tension and migraine headaches); complex regional pain syndrome (formally reflex sympathetic nerve dystrophy (RSD)); fibromyalgia; and cancer-related pain. Of course, each type of condition results in different experiences of pain. But, as an example, chronic low back pain (CLBP) is known to result in severe disability and limitation of movement. In its most severe forms, CLBP may cause paralysis and numbness, loss of gross motor control, loss of bowel and bladder control, loss of reflexes in lower limbs, spasticity, and nerve degeneration.

Patients with chronic pain tend to experience ongoing pain and sometimes experience disability secondary to their condition. Most resort to invasive assessment or treatment procedures, including surgery, to help ameliorate the pain. Individuals with chronic pain are less able to function in daily life than those who do not suffer from chronic pain. Patients with severe chronic pain and limited mobility oftentimes are unable to perform activities of daily living, such as walking, standing, sitting, lifting light objects, doing paperwork, standing in line at a grocery store, going shopping, or working. Many patients with chronic pain cannot work because of their pain or physical limitations.

* * *

Treating individuals who have chronic pain and PTSD

Cognitive-behavioral therapy (CBT) is a psychotherapeutic intervention that helps patients manage chronic pain (Turk, Meichenbaum, & Genest, 1983). Other types of treatment that help patients with chronic pain include: stress inoculation training, behavior modification/operant conditioning, self-directed treatments, and adjunctive treatments such as biofeedback and relaxation training (Brown & DeCarvalho, 2004). There are also manualized treatments that specifically address avoidance behaviors and hypervigilance, because these behaviors tend to reinforce fear reactions (e.g., Meichenbaum, 1986). Beyond this, Shipherd, Beck, Hamblen, Lackner, and Freeman (2003) piloted a more specific protocol for providing CBT treatments to address PTSD symptoms in patients with chronic pain. Results from this small study suggested that along with positive improvements in patients' psychiatric diagnoses following application of this treatment, there were also improvements in pain-related functioning. This was true even though the pain was specifically not addressed in the intervention, which suggests that the beneficial effects of PTSD treatment may generalize to other problems without the need for direct intervention. Further research is still needed in this area, but this study indicates that when treating patients with chronic pain, it is vital that health care providers address patients' symptoms of PTSD and depression. In so doing, patients are more likely to have improvements in their levels of pain as well as in their physical and emotional functioning.

http://www.ptsd.va.gov/professional/...-providers.asp

Good luck and good hunting!

Mike

Sorry to hear that you have had the Swine Flu, Britanny - I hope you are feeling better now!:hug:

I don't have any experience with the Ketamine infusions as they don't do them in under 16s over here in the UK but my Doctor put me on oral Ketamine about a year ago and it helps me a little. I am only to take it when I am in a really bad flare due to my age etc but it helps lower my pain a little. It doesn't help as much as it used to unfortunatley though.

I have a few online RSD friends on another forum and they have had Ketamine infusions and they have worked well for some and not well for others ... I guess it's one of those things with RSD where what works for one person, wont work for another unfortunatley.

I wish you the best of luck should you wish to try them and hope you get the pain relief and remission you so desperately need and deserve!:hug:

Keep us updated,
Alison

Would Anyone Who Has Done Krtamine Infusion Please Contact Me?

Would anyone who has done the ketamine infusion please contact me at *edit*

Much appreciated.

Many thanks.

new member contacts can be made thru forum system & posts

Five day ketamine treatment ?

Hi sandyri! Have you tried five day ketamine infusion?

Quote:

Originally Posted by SandyRI (Post 571255)

I have had 7 stellate ganglion nerve blocks (SGB) for my upper right extremity, one lumbar block for my right leg and 3 lidocaine infusions. Its hard to believe when I write that that I've been sick that long! I was diagnosed June 2008 and had my first nerve block on Christmas Eve 2008. ...
six months. After the first 2 blocks I could actually lie down and sleep on the back of my head, which is the source of my worst RSD pain. That was just great! Because they also work on central nervous system they can help to reduce your other symptoms as well over time. I remember driving to work one morning and almost feeling like the old me.

It's really important, IMHO, to have the blocks done by a REALLY good practioner who knows what they are doing and hits the "spot." Nerve blocks are risky, especially the SGB which is done in the cervical spine and go into the front of your neck. I wouldn't let anyone in RI touch me for one of those.

I started lidocaine infusions in mid July of 2009. I just had my third a week and a half ago. The first 2 worked really well on my right leg pain, which is where my RSD spread last spring. I also had a lumbar block on Sept 1st that helped, but I think the lidocaine worked really well, too. The infusions make you tired so that you sleep better. I thought the first 2 impacted me much more than the 3rd one did. I wish the infusions had worked on my head pain, but they didn't, at least not that I could tell. They are very relaxing and lidocaine isn't risky (like ketamine), except that during the 2nd infusion I did have a reaction when the drip rate was turned up too high. I was fine once they turned it back down.

If I didn't answer all your questions please let me know. I am really surprised that you would have ketamine infusions done PRIOR to trying these other modalities first. Wow. You're lucky because ketamine has a much higher success rate.

I saw Dr. Ronny Hertz at St. Luke's on Friday and will be starting ketamine there in a few months. In his opinion the FDA will soon approve ketamine for RSD and it will become much more available. When that happens your insurance company should back off.

Take care, XOXOX Sandy