For Nils Hulth

Nils, my email bounced back to me as you have apparently gone on medical leave.  I hope you see this and find it of some use.

On Wed, Oct 16, 2013 at 3:16 AM, Nils Hulth wrote:

If you would chose one treatment in the 3-6 month window (outside physical therapy) to fight for to get, which one would you chose?

I do not know if that question is possible to answer, but I thought I could just as well try.

Many, many thanks in advance,

Nils

Hi Nils,

I apologize for not answering immediately.

Please understand that I am a fellow CRPS/RSD patient and not a health care professional.  The very best thing you can do is to find a Swedish neurologist as well as a Pain Management Specialist experienced in treating CRPS.   I know that this is difficult, but I also know that there is more progress being made in Europe than in the United States.

Some possible sources for you to call, who, if they cannot help themselves, can probably tell you where to find what you need:

Frank J.P.M. Huygen MD PhD 

Professor in Anesthesiology 

Director Pain Treatment and Research Centre 

University Hospital Rotterdam 

The Netherlands 

PO Box 2040 3000CA Rotterdam 

Tel +31107034906 

Fax +31107035184 

f.huygen@erasmusmc.nl 

Neuro-Rehabilitation Centre Medical center:

Mats Andersson
Verksamhetschef

Hans Lindsten

Medicinsk chef, Neurologisk klinik

Per-Åke Ridderheim

Medicinsk chef, Neurokirurgisk klinik

************************************************************

You might also consider calling the European Federation of Neurological Societies to ask for a good recommendation.  Their contact information is:

European Federation of 

Neurological Societies

Head Office

Breite Gasse 4/7

1070 Vienna, Austria

Tel.: +43 1 889 05 03

Fax: +43 1 889 05 03 13

E-mail: headoffice@efns.org

They also have branch offices in Florence and Prague.  More specifically, here is some info on their committee that addresses "neuropathic pain":

EFNS Scientist Panel Neuropathic pain/ ENS Sub-Committee Pain

In light of the foundation of the European Academy of Neurology in June 2014, this EFNS Scientist Panel and ENS Sub-committee have already merged and are fulfilling their tasks together.

This panel/ sub-committee is dedicated to promote knowledge on the pathophysiology and treatment of neuropathic pain.

Attal, Nadine (MD)
Department of Pain Treatment
Hôpital Ambroise Paré
9 Avenue Charles de Gaulle
92100 Boulogne-Billancourt, France
Show on map...
nadine.attal@apr.aphp.fr

Schestatsky, Pedro (MD)
Rua Ramiro Barcelos 2350 9th Flo
90035-000 Porto Alegre, Brazil
Show on map...
pedro.schestatsky@gmail.com

As for my personal knowledge of how to treat CRPS at an early stage -- this is when "blocks" can help the patient overcome the pain enough to participate in INTENSIVE physical therapy programs, which have been known to be curative when embarked upon during this window of opportunity.  It means training yourself to work very hard while feeling a lot of pain, but it may very well save you from a lifetime of disability and suffering, so I'd say it is worth it!  It's important that your Physical Therapists be well-trained in CRPS, as some "usual" techniques are contraindicated. Yes, I know you requested "outside Physical Therapy," but at this stage, it truly is your best chance.  You must be in tremendous pain and the thought of pushing the limits of that pain can be terrifying -- that's why you need both the neurologist with experience and an anesthesiologist/pain specialist with experience to help you get through it, while starting on some pharmaceutical treatments, perhaps even ketamine infusions.                                                                                                                                                                                    Above all else!  I would give this reference to anyone treating you, and I would become familiar with it yourself, as I have found it to be the MOST HELPFUL INFORMATION out there!  These are the Clinical Treatment Guidelines written by two of the best CRPS doctors in the United States (Dr. Anthony Kirkpatrick, with assistance of Dr. Robert Schwartzman): http://www.rsdfoundation.org/en/en_clinical_practice_guidelines.html                                                                                                                    I apologize for the weird formatting, I don't know what my email is doing!  I WISH YOU MUCH SUCCESS AND IMPROVED HEALTH!  Until such time as you can get the best care, and make your choices on how to proceed, I CAN advise you to try to keep moving, in spite of the pain, and to try home efforts at "desensitization," such as putting your feet in buckets of rice grains (use your imagination!).  It's important to get your pain levels down to a point where you can manage to use your feet as much as possible -- and I do understand what strength of character and will is required to do that.  I believe in you, and I believe you can do it.  One word of caution: do not use ice on your feet, even though it may feel good, it can be harmful.  Please stay in touch and let me know if I can be of help -- Bianca/profderien