Health Organization for Pudendal Education

After doing a lot of asking around I went to PT 3 weeks ago. I really like this PT. She is very knowledgeable and not aggressive. At my first visit she was very concerned that I am not happy with the physician that treats my RSD. Told her that Dr. Hibner has been the only one to really try to do something about my legs and that isn't his speciality. She really feels I need to find someone who can really treat my legs. Have spent the last 2 weeks reading and looking around for someone. Well, today at my visit she asked me what I had done about getting an appointment with an RSD specialist. Told her I was still looking. Then as she worked on my psoas and abdomen we discussed all the interventions I do and that the massage work she is doing isn't going to last because I have gotten a massage once a week for the last 3 years with an excellent massage therapist. We also discussed my exercise routine that I was doing pre-surgery. At the end of the session she said to me "Just think how bad you would be if you hadn't been so proactive about everything you do. You do know if you hadn't you would be in a wheelchair right now with contracted legs. You have to get an RSD specialist before you get much worse because you are fighting a cycle that isn't going to get broken if you don't get your RSD under better control." Needless-to-say I left the appointment a little depressed and now am back on a serious search for an RSD specialist. I have found some RSD forums but none as good as this forum! Will keep looking and have set a goal to find a specialist before I see my family dr. in 2 weeks so he can do the referral. I work really hard at my attitude because I am well aware the effects of your emotions on pain but today just can't get past feeling sad over the mess with my legs, pelvis and abdomen

NYT -- I'm sorry to hear that you're feeling down -- It seems so uncharacteristic of you since you are usually so positive and upbeat and knowledgeable and so helpful to all of us. Aren't pain doctors specialists in RSD? Isn't RSD a subspecialty of pain management? Do you not have a pain management doctor now? If not, shouldn't you simply be looking for a good pain specialist? Anyway, I wish you the best in your search. You WILL find a good doc and you WILL NOT get any worse. You are doing everything you can to avoid progression of the disease. We are all here for you and will be with you on your journey to recovery.

Thinking about you and sending you lots of hugs.

Even though dr. special there are subspecialities. Like there are pelvic pain specialist but the majority of them don't specialize in the treatment of pudendal nerve pain. Same thing with RSD. Many dr.'s can do basic treatments for RSD because they know about it but they can't/won't do Ketamine protocols or some of the alternative treatments like mirror image technique or graded imagery. I was only diagnosed 1.5 years ago with RSD even though I probably have had it for 3.5 years. Dr. Howard gave me the official diagnosis and referred to a pain specialist in Rochester. The pain specialist in Rochester referred me to a physician in Syracuse. The dr. in Syracuse is okay but he is so focused on putting in a spinal cord stimulator after I have the pudendal surgeries that he just blows off all my questions about other treatments. When I saw him in January I told him I didn't know what caused such a bad flare in my legs and that I had been really struggling, showed him my purple/bluish legs and said look at them they are killing me. He did my piriformis injection and told me not to come back until after my pudendal surgery. No suggestions for what to do about the major flare. Just not satisified with the treatments by him. Now with the encouragement of the PT I think I have found where I will go in NYC to a anesthesia group that specializes in RSD. They do several different kinds of Ketamine protocols and other treatments. Would save me from travelling to Phoenix as NYC is a 45 minute air flight for me. Much easier than the 5 hour flight that kills me but if I have to continue to go to Dr. Hibner for Ketamine and epidurals for my legs then that is what I'll do but I would be better off with an anesthesiologist who is up to date on all the latest for RSD.

I'm in much better spirits after watching a movie with the husband, son, daughter-in-law and grandpuppy Izzy. A little bit of distraction goes a long ways for improving the mood and putting aside your troubles for awhile. Thanks for listening to my rare breakdown. They don't happen often.

nyt,
As Lernica said, you are our rock. Always so smart and supportive that it is easy to forget that you are struggling just like the rest of us. As you have said many times, we all have to be our own best advocate and you have in yourself the best possible person for that job. When I went to see Dr. Potter in May and was riding into town from LaGuardia, I was pretty overwhelmed by the sophistication and wealth of the place. You can't help but think that there must be some answers in a place like this and you are only 45 minutes away. I moved to California 35 years ago when I was 25 but before that I lived in Syracuse for two years and all I can say is that if you can survive the winter in upstate NY, you will prevail over RSD. I have read some really positive things about ketamine and I know you will find some answers there. Keep your spirits up and feel free to vent. We are all on your side.

All My Best,

Don

thanks everyone for the kinds words and PMs. Always nice to know there are friends out in cyberspace on your side.

Hi NYT,
I hope today finds you in better spirits! It's only natural to have days when you feel down and overwhelmed. Your PT is absolutely right. You are one of the strongest and most pro-active people I know. I'm not surprised that you've already picked yourself back up and I'm glad you found someone more local to treat your RSD. I hope you find the appropriate care you need there and that the treatments are successful!
With hugs and support,
Karyn

Nyt - if you are on Facebook there is a group called rsd angels. Maybe see if someone on that group can recommend a dr to you. Just a thought. Hang in there!!

Merrie

Thanks for the suggestions Merrie. I did find an RSD forum on Neurotalk and they have a list of RSD dr.'s that do a variety of Ketamine protocols.

NYT, I hope your wait for the group in NYC isn't too long. When you have something to look forward to as far as treatments it helps to keep you going knowing there might be a bit of pain relief around the corner. Thanks for all you do for everyone on the forum. We can always count on you to give an answer that makes sense.

Hugs,

Violet