Health Organization for Pudendal Education

Ketamine Infusions for 2 years now. I am reporting again to make sure everyone knows that IV Ketamine does keep my PN under control and that it may very well work for you if you can find a physician who understands the medication and how to adjust the dose on an individual basis. I have worked my way up to an optimal dose that is dripped in for 5-6 hrs a day for 2 consecutive days a month. I have increased my activity levels, quit my opioids and I have much better quality of life now. It is unfortunate that this medication is not available to all persons with this awful disease.John Claude Krusz MD., PhD Dallas Texas has worked tirelessly to help me and so many others with severe pain syndromes. I don't believe there is another doctor in the United States who has the background in pain management that Dr Krusz has. The sad thing is that Dr Krusz does not accept insurance and many carriers have not seen the light and consider IV therapy experimental making IV therapy hard to come by for most of us PN patients. Please do look into the RSD foundation and study how this medication has had a profound benefit for patients with RSD CRPS and how it may be of benefit to the PNE community.
Wishing all PN patients the best and posting my progress as often as possible hoping that perhaps i can help give hope that some day this medication will be available as one more PM tool to all who suffer this tragic disease!

TCB

TCB, I am so glad to hear this is helping you. I also get Ketamine infusions plus Lidocaine infusions. I am not pain free but have a much better quality of life since having these on a consistent basis.

nyt

That is great news. The lidocaine works wonders for me as well. It breaks my heart that we seem to be the only ones on this forum who have been able to get help with this miserable disease. I would give anything to have some wealthy individual get behind this medication and our doctors and build an infusion clinic that takes care of all patients with sever neuropathic pain syndromes. Its hard to put a price on pain relief and quality of life that we have been able to get from these medications. I am writing an appeal to my insurance company contesting their claim that this medicine is experimental. It has been used on a regular basis up at Drexel in Philly PA and in Dallas for at least 13 years. I often wonder how someone who does not have this condition can pass judgement on us and decide that one medication our another is not proven to work. NMDA antagonist Ketamine and lidocaine are the only medications that have helped me. If you are willing,please tell me where you are getting your help so that perhaps others might be able to seek help from your pain specialist.Thank you for sharing and best of lusk to you and all others who happen to see this post and threads I have created regarding my battle with PNE/ PN.

If you have access to FB there is a group called Ketamine Klub. The woman who runs it, Nancy Cotterman, is very knowledgeable about Ketamine. She was one of the patients that was part of Dr. Schwartzman's study on Ketamine Coma that was done in Germany. She has helped many individuals with insurance appeals with Ketamine. Your best argument to make or for the doctor to make on your behave is that Medicare pays for Ketamine. Many insurance companies once you start showing Medicare covers it then they will start covering it. She also has a blog that you can contact her through: http://nancyrsdcrpsblog.blogspot.com

I get my infusions done at the Rochester Pain Clinic, NY. The Ketamine Klub keeps a running list of doctors that provide Ketamine and since Rochester Pain Clinic was added to the list they are now booking into next year to start the 10 day outpatient infusion protocol. There is such a huge need for this but they do not make money or at least not much on these infusions.

There is so much that is not known about pain. Why does Ketamine help some individuals and not others. Is it the dose that one gets or is there pain caused by a different mechanism.

Like I said, I am not pain free but I do not spend my days wishing someone would cut my right leg off because I couldn't stand the pain. I still get days like that when it gets close to my infusion times but it isn't everyday anymore.