I just recently received a list of ketamine treatment centers in the US from Jim Broatch of the RSDSA. I would be happy to mail you a copy of the list, please feel free to send me a PM.

Sandy

Please, if you could email me that list I would so appreciate it.

This is the link in FB:

http://www.facebook.com/group.php?v=...70&topic=11491

I sincerely hope I am not making any administrative errors by posting the link here - it is Jim Broatch's list followed by a discussion of editorial corrections to the list.

Good luck. Sandy

The God who created us strengthens us. For some of us God's will for our life is remission for others he has different plans. Whatever his will is he will also provide us what we need to manage our life. There are sciputures in the Bible to support these ideas. I'm just too foggy brained to think of them or look them up. If you want to know where they are PM me and I will look them up.
God is amazing and will meet our needs if we ask him. If you don't have a personal relationship with our GREAT GOD ask me or attend a church close to you.
God Bless,
Sherrie

I'm so happy that you found some relief from the relentless pain of RSD. I'm very curious about your diagnosis. How did your doctor(s) determine that you had "full body" RSD?

I still have one piece of metal left in the bones of my foot that I think is the culprit for all my pain woes but no one can tell me why I have pain else where.

I'd apprecaite any further insight you could share with me. I hope you are still doing well.

MsL

MsL

This is the 3rd time I have tried to post this reply. Hopefully, I has not posted 3 times.

I had full body nerve pain (head to toe), shiny skin on my hand and changes in color on my left foot, sweating more predominently on the left side, more hair growth on one left side, temperature difference. I discussed it with my neurosurgeon who thought it might be CRPS. That is when I decided it was time to see Dr. K who confirmed the diagnosis (you don't have to have all the signs - but the nerve pain in the key factor).

Dr. K has the new criteria on his website as to how it is diagnosed (most websites have old information - you know the 3 stages? - old information). He also has videos of patients and their rehabilitation. Very informative! Everyone presents differently. This is particularly helpful for doctors who do not know what this is.

I am sorry about your situation. Where is your pain?

My neurosurgeon said the pain was referred pain - like when someone is having a heart attack but they feel pain in their left arm. They have studies on this. I think one recently about women who had C-sections and would have pain in their feet or teeth - other places other than the abdomen.

They think that the brain may be remapping because of the pain but the good news is they have seen it can be reversed. Oxford Journals had an interesting article on it. They can see the change using a functional MRI of the brain.

Just curious as to why you think the metal is an issue? You know your body the best. Will removing the metal help? I don't know.

I know it is hard to make a decision.

For me, I had cut my finger and I got full body pain, I had surgery on that same nerve and the pain went up then down (9 months later), PT massaged the nerve on the finger due to the scar and the pain went up, had a second surgery on that same nerve and the pain went up again. To me, this is a clear indicator that this nerve plays a role in this problem but it is not the only piece of the puzzle.

It may have been better had I had the surgeries under constant ketamine infusion.

Keep us informed as to what you decide. There is always hope!

By the way, thank you for asking, I am still doing better than I was before the infusions.

I pray you will be feeling better soon.

IT

http://www3.interscience.wiley.com/j...TRY=1&SRETRY=0

CNS Measures of Pain Responses Pre- and Post-Anesthetic Ketamine in a Patient with Complex Regional Pain Syndrome
L. Becerra, PhD,* R. J. Schwartzman, MD, † R. T. Kiefer, MD, ‡ P. Rohr, M MD, ‡ E. A. Moulton, PhD,* D. Wallin, BS,* G. Pendse, MA, MS,* S. Morris, BA,* and David Borsook, MD, PhD*
*Pain/Analgesia Imaging Neuroscience (PAIN) Group, Brain Imaging Center, McLean Hospital, Harvard Medical School, Belmont, Massachusetts; † Drexel University College of Medicine, Department of Neurology, Philadelphia, Pennsylvania, USA; and ‡ Department of Anesthesiology and Intensive Care Medicine, Eberhard-Karls University, Tuebingen, Germany
Correspondence to David Borsook, MD, PhD, Pain/Analgesia Imaging Neuroscience (P.A.I.N.) Group, Brain Imaging Center, McLean Hospital, 115 Mill Street, Belmont, MA 02478, USA. Tel: 617-855-2691; Fax: 617-855-3772; E-mail: dborsook@partners.org
Copyright © 2009 American Academy of Pain Medicine
KEYWORDS
CRPS • Neuropathic Pain • Imaging • Clinical • fMRI • Ketamine Coma

ABSTRACT
Background. Previous reports have indicated that ketamine anesthesia may produce significant improvement if not complete recovery of patients with complex regional pain syndrome (CRPS).

Aims. Here we report on a patient who had CRPS affecting mainly the right side of her body who underwent functional magnetic resonance imaging (fMRI) scans prior to and in the months following apparent successful treatment with anesthetic doses of ketamine.

Materials and Methods. The patient underwent two imaging sessions: one during her pain state (CRPS+) and 1 month after her ketamine treatment in her pain-free state (CRPS-).

Both spontaneous and evoked (brush, cold, and heat) pain scores decreased from 7–9/10 on a visual analog scale prior to the treatment to 0–1 immediately following and for months after the treatment. For each imaging session, the identical mechanical (brush) and thermal (cold and heat) stimuli were applied to the same location (the skin of the dorsum of the right hand).

Results. Comparison of CRPS+ vs CRPS- for the three stimuli showed significant changes throughout the cerebral cortex (frontal, parietal, temporal, cingulate, and hippocampus), in subcortical regions such as caudate nucleus, and in the cerebellum. In addition, resting state network analysis showed a reversal of brain network state, and the recovered state paralleled specific default networks in healthy volunteers.

Discussion. The observed changes in brain response to evoked stimuli provide a readout for the subjective response.

Conclusion. Future studies of brain function in these patients may provide novel insight into brain plasticity in response to this treatment for chronic pain.

They have also seen this reversal in people who have recovered using mirror therapy, ECT, and PT. They have even seen this reversal in people with phantom limb pain.

Dear IT,

Thanks very much for sharing your experiences and information. It is very informative. I went to Dr. K's site and he has done quite a bit since I last visited it a few years ago.

My pain is primarily in my left foot where I still have one screw left after a failed bunion surgery. I had 2 of the screws removed last year but this 3rd one had so much new bone growth around it and was so deeply embedded that they didn't want to monkey around with it. I get deep sharp shooting nerve pain directly from that area and a recent bonce scan showed inflammation in my foot directly under the area where the screw resides. The swelling of my foot increases with activity and stress. I think something has changed inside structurally very slightly and the metal is literally getting on my nerves.

I have burning and deep bone pain that moves around the left side of my body, primarily my joint areas and it comes and goes. My bones turn ice cold. If I don't stay on top of my RSD pain in my foot these other areas become overly sensitized, that completely exhausts me and I crash. You are probably right that it is like referred pain.

What is strange is that the bone scan also revealed more degenerative changes in my right foot, more so than the left side. While I do experience occasional pain in the right foot too it was never the nerve pain of RSD. Since I realized that my doctors were all concerned about my right foot too I became a bit anxious about potential spread but no one thinks I have spread there. I think the mild burning I'm feeling in that area is simply a psychosomatic response to reading the report. I keep telling myself that and it seems to calm down.

I've always believed that the 3 metal screws were the real source of my pain and I was so deeply disappointed when I was informed that they couldn't take out the 3rd. The surgeon is a very well respected head of the department for trauma surgery at that hospital and I think he did what was best at that time. There is no doubt that I benefited from the removal of the other screws as they were working their way out on their own with each step I took. I'm working toward a plan to see what else can be done.

I'm so happy to hear you are doing better following your infusions. Do you plan to have any more in the future?

You are right, there is always hope. Thanks for the inspiration.

MsL

Hey MsL,

You are very welcome!

Your story is very intriguing. I am so glad to hear you got relief after they removed the other 2 screws (great news)! Did the doctor feel that the pain would lessen over time? Did he have any other suggestions? Did, the surgery to remove the other 2 screws cause you any additional RSD pain or any spreading of your RSD symptoms?

I like to think of doctors as health advisors. But the decision ultimately lies with the patient (after all, it is us going through the pain - but we also have to deal with the consequences of our decisions too).

I sought counsel of a few different doctors and PT's and I got mixed reviews on whether or not to get the 1st surgery. I did a ton of research on the internet too. I had to make the final decision.

I know 2 people who had the same surgery done on their spine within weeks of each other (by 2 different doctors, same area of specialty). One was instructed to wear a collar and the other not (his doctor told him that was old information). I thought that was very curious. The one who did not wear the collar faired much better.

Do you see an RSD specialist who can give you some insight? Have you seen a neurosurgeon? Sometime getting information from different sources can help.

I think you are on the right path to continue to pursue your options. Gather as much information as possible. Good luck on your quest for health and let us know what you decide.

Yes, I believe I will continue on with the infusions, as I need them. I know it is a process and it takes time.

With God, all things are possible!