Hey Lordwood,

Did you try to get an appt with the doc that Pete recommended?

Please keep us posted. BTW - you mentioned that you had been treated at a Children's Hosp - do you mind if I ask how old you are? And who you have for support? Do you live with your parents, or your siblings, or by yourself?

I am REALLY sorry that you are in the shape that you are in. It sounds like you are in a whole lot a pain and feeling very desperate. It must stink to have stomach issues on top of pain issues, like most of us don't have enough to deal with as it is!!

I don't mean to lecture you - BUT - I can tell you that if I repeatedly took my meds in a manner that was contrary to what my PCP ordered, over a long period of time, he might not want me a patient anymore. He's been my doctor (and my husband's) for the last 20 years, and our relationship is built upon mutual trust and respect. When I need help I know that I can call him, and conversely, when he writes a script for me, he knows that I do my best to take it according to his instructions. Also there is a certain level of legal liability when physicians write a script, and I think we owe it to them to be respectful and responsible. In any case, I adore my doctor, and would never want to lose him. So I try pretty hard to follow his insructions, or keep him in the loop when I have issues with dosages, side effects, etc.

It sounds like you HAVE to get a doctor - a really good one (see Pete's message) - and WORK with him as best you can. And you need someone to help you with that, like your parents or a friend or a counselor.

Good luck, Sandy

I'm not sure if you would want to travel to get to a good doc, but I'm from NY and travel to Cleveland, OH to the Cleveland Clinic Pain Treatment Center. I see a Dr. Michael Stanton-Hicks. He travels the world to lecture on RSD. He is an expert on it. He has helped me and I am far from an easy case. If you want a phone # I would be glad to pass it on. Or you can go to the Cleveland Clinics webpage and search for the doctor and read up on him. Let me know if I can help.

I saw Dr Stanton Hicks too. Have you docmilo6 had any procedures done by him? My friend had her scs implanted by him recently after many other types of treatment. Just wondering what you may have done with him. TO the original poster I missed the part about your stomach issues but the giral I am talking about here has rsd in her stomach in addition to her limbs and the scs helped for relief in all. I agree I hope your family goes to apts with you and can support you as well. Many thoughts

Hi daniella. Yes I have had procedures done by him. But I have not had a SCS placed. He has wanted to do the SCS for some time but I'm dragging my feet.
I do know others that have had him implant them though. How did your friend make out?

Mainly for me he has done all sorts of blocks and has implanted an epidural and sent me home on a pump with Fentanyl and Marcaine. One lasted 4 weeks and the other lasted 2 1/2 months before the catheter moved and had to be taken out.

What did you think of him? Did he help you? I hope so. I think he is a great man and definitely has a great mind. He is the one regulating what meds I take now.

Hi. I have mixed on him and Cleveland Clinic in general. I do feel that he is skilled and if one did get something like scs he would be a good one to do it. I am currently seeing a new pain doc. My friend though who had her scs implanted by him is doing well but she went through a lot to get to this point of failed treatment and many other opinions then him too. I also can relate as not by him but a doctor at UCLA was suggested the scs and this one I am currently seeing after a few more other smaller treatments said he would suggest it to. I go back and forth with just wanting to try and not wanting to. Hope you continue to find relief and come to a choice that works.