Health Organization for Pudendal Education

I have been on a quest to get pain relief for severe PNE since 2007. Dr. Hibner and Dr. Castellanos diagnosed me in 2011 and have taken great care of me. These fine doctors have devoted their lives to helping us and there are no words that can describe how thankful I am for their sincere efforts to help me and so many others. After several blocks it was decided that surgery was an option but I had just been through a pelvic surgery in Virginia to remove a pelvic lesion and I wanted to wait and consider less invasive options first. We thought about trying a two week trial with an On-Q pain buster system that would numb the nerve for a short time only. I elected to try Ketamine infusion therapy but had to find a facility where IV Ketamine is offered. My pain Psychologist Dr. David Hanks of Plano Texas suggested I see Dr. John Claude Krusz in Dallas Texas. Dr Krusz was able to see me right away. He knew that I was at the end of my rope with severe pudendal nerve burn that was intractable and not responding to conventional therapy. He said "were all in this together." He started me on IV Ketamine that day and I returned to the clinic each day for one or two treatments over a five day period starting June 25, 2012. Shortly after I returned home I noticed that my pain had moderated by at least 2 or 3 points. I was beside myself having found what appeared to be the holy grail of medication for this patient for this horrific disease. I wanted to continue the fight and Dr. Krusz suggested I return for another week of treatment in September 2012. After the second week of once a day infusions my pain levels went down and have stayed down giving me that much needed break from the constant burning/causalgia that is the hallmark feature of PNE. I will likely need periodic booster infusions at intervals yet to be determined. Ketamine is not for everyone but when all else fails there is always HOPE and this medication has changed this patients life for the better and my hope is that others might benefit by my experience just as I have benefited by all the postings on this wonderful site!

What fantastic news!!! Ketamine has been helpful to so many of us and that includes me. I am so glad you found a physician near you that is a partner with you. Here's to more days with less pain - thank you Ketamine!

Thanks for posting your good news TCB. I hope this lessening of pain continues. fantastic
Take care

Thanks TCB
for posting this great news.. We are happy for you and very encouraged!
I am looking into in -patient ketamine treatment as well, and am praying that if it is for me the doctor will take me as a patient in his program. His program is the NY area.
Thx for posting your news.
and best of luck!

thanks for posting TBD. I have researched Ketamine a lot and actually tried two outpatient infusions with a local doctor, but they had no protocol in place and I did not h/ave a positive experience. I know if I want to pursue this more I will have to travel to someone who administers Ketmine. Would you mind sharing your Ketamine dosage and length of infusions, TBD? Thanks!

Hi Faith
Just wanted to say hi and also add that I tried ketamine in the outpatient way you described. I later found out that it was not done in the proper protocol etc..
So I cannot really count the results .. and am ready to try it the proper way.. My pelvic pain gp of docs agrees that in patient ketamnie may be something for me to try soon, but the trick will be to get the doc who administers it in this area to accept me into his program.. Im praying the pelvic pain doc will go to bat for me and explain my situation to this doc.
Not sure if its for me but I am willing to try anything to get my life back as we all are..
I pray that you have luck in finding someone nearer to your home that will do this for you..I will let you know if I do this...
Thinking of you and hoping you are doing ok.
Have a blessed Christmas
Kathy

Faith,
My Ketamine treatment was outpatient daily for five days 10AM - 5PM more or less in June 2012 and then a second round in September for four days. The treatment protocols and dosage all depend on the doctor and what he/she feels is best for you under the circumstances. I think we are all different and the response varies depending on the protocol used, the patients response and the experience of the doctor administering the medications. Dr. Krusz is an MD in Neurology and holds a Ph.D in Neuropharmachology. He has developed his protocols over many years of treating chronic pain patients with numerous conditions. He is and has been on many boards, serves as a consultant to numerous drug companies and has always been willing to help other doctors by sharing his knowledge. He was happy to hear that Dr. Hibner and Dr Castellanos are working on a Ketamine program at St. Josephs and he has offered to help them any way he can. In the words of Dr. Krusz "WE ARE ALL IN THIS TOGETHER" Best of luck to everyone!

TCB

Thanks TCB for posting
Your doc sounds great. I am going to tell my doc about him. Hopefully the docs offering it here in hte NY area area as experienced.... or interested in talking to another doc with much experience in treating with this med.
Tho I know ketamine is not for everyone, I am anxious to try whatever may help as soon as possible...
I think if all docs would follow the 'We are all in this together' philosophy many of us would be able to control our pain much sooner than has been the case....
All the waiting around would diminish if they would only understand that suffering from pain is as bad as suffering from any other serious illnesss..
Thx again for the info.

Hi kathyd,

Merry Christmas to you too. By the way... I finally mailed that cushion to you this past Monday. Sorry it took so long! I think Ketamine sounds like a great option for you. Have you talked to nyt about it? She lives in NY and has had success with Ketamine offered by Dr. hibner...can't remember if she did it locally in NY or not. Yes, please keep me updated.

Hi Faith
Thx so much for mailing that cushion!
So nice of you! I will let you know how it works out.
About ketamine, my rheumatalogist wants me to try another med first...to adresss another issue we found...
But I will address the ketamine soon if needed. I hope that you have an opportunity to try it soon if you feel its right for you.
Thanks again and Merry Christmas to you...