Well I have made the choice cause I am going down hill again in pain level. So frustrating how I could be doing better in ability and the pain level and then bammo down hill again and it is nothing I did. Anyhow I have decided to get a tunneled epidural catheter and then do the pt again that I was unable to do because of my pain level. That is scary cause twice a day pt sounds like a lot and I fear when the catheter comes out the pain I will feel from that. I am having this at Cleveland Clinic and am not sure if I will try the day pain program again or have someone who just works with me with the pt from there. I guess if this does not work I may be a candidate for the scs but this needs to be a starting point.My pain doc works with many people with rsd and why after 3 other pain docs I chose him I guess and I drive 3 plus hours each way. Any thoughts? I hope I don't regret this but my pain is getting so high again but I know there is always worse so that is my fear.

Daniella, I live six hours away from Cleveland Clinic but I have to say I feel every uncomfortable mile is worth the trip. They are the only group I have found that actually know how to treat RSD. I am needing a serious bone grafting surgery on my right hand and I am now consulting with doctors at CC. They work with Dr. Stanton-Hicks to provide the best medical care to help with pain and to minimize the chances of a RSD spread.

I know these decisions are not easy to make but I just wanted to let you know I think you are going to a great medical facility. To help with the drive I always go to the library and pick up a couple of books on tape. This has really helped to make the trip go a bit faster and to get my mind off of my fears and anxiety. There is a series of books called the Kinsey Millhone Alphabet Mysteries by Sue Grafton that we listen to on the drive. We love them and it really helps to kill the time. You might look into this as doing anything you can to keep your limbic system calm will help.

Thanks. Is Dr Stanton Hicks your doctor?He is mine and who will be doing the surgery. Like I said I went to the pain day program there and had went to another pain doc before him. I would fly to Japan to feel better so it is not the drive though you know being in pain its not the funnest. I just fear this surgery and the pt.I hope you get some answers and relief to. Hey where do you live?

Daniella,

Yes, Dr. Stanton-Hicks is my doctor but I have only seen him once. I have another appointment with him in September. I have seen two other doctors at CC, one is a pain management doctor.

Daniella, have you tried ketamine treatment at all? There is some good reseach going on about this treatment and how it blocks glutamate in the brain. I think this can also be done on a much lower level with antioxidants such as grape seed extract, vit-C and such. I wonder if this could help you turn down the pain in you CNS. Maybe that is the medication you are going to have via the pump? If so, that might be a brilliant move.

Hi Daniella, I hope your surgery goes well. I've read on this forum that many surgeries are done with ketamine infusion done by the anthesiologist. I know how important it is to be in a good frame of mind, positive, and relaxed. I've had several surgeries, and it is very important to be relaxed, even if you need an anti-anxiety med. Hope all goes well.
NOTE:To Coffeebean. I'm sorry it took so long to return your message to me. I don't even know if it went thru. But yes, my Dr. feel as I do the anti-anxiety med helps well in connection with pain meds. It's very important for keeping my pain in control. Just by coincidence, our business is coffee service to businesses.Hope all is well with you. I take 2 mg. of Lorazapam 3 times a day. Was able to reduce Vicodin from 6 down to 4 pills a day after I changed from Neurotin (3200 mg.) to Lyrica 300 mg. and my Dr. is conservative is prescribing meds. I still really struggle with depression. I'm two different meds for this double strength Wellbutrin xl and Paxil. Anyone know of something else that is effective for them. My next appointment I'm going to talk about this. I spend so much time in bed and get out of the house maybe once a week.I do swim for exercise. I used to be so active and happy. Water skiing, snow skiing, tennis, aerobics, walking, weight training, traveling, several trips a year. Always size 6 for 30 years, and now have gained so much weight 50 lbs it's difficult to even have energy to be active. Others have mentioned being exhausted too. I know the Limbic part of your brain that controls emtions like depression is part of RSD, but I'm really struggling to pick myself up. I have written down a plan-and small goals like swimming and weight loss. Thanks, Loretta Jewell

Thanks. I too had seen another pain doc at cc before him but I feel better about Dr Stanton Hicks. I hope you have a good apt in Sept. I have not tried that infusion. I have a few more ?'s to ask him because I am going to do the pt there after and I guess stay in a hotel so I would think this all needs to be set up.
Loretta I am sorry you are so down. I can relate. I hope you feel better soon.

Loretta, thanks for the note. I too struggle with anxiety and depression since developing RSD. It is really a mixed bag of systemic troubles for me. Along with the depression I now get anxiety attacks and my heart starts pounding for no reason whatsoever. It really scares me at times but it tends to calm down after and hour or so. It is really hard on my system. I have had a lot of medical tests which have not shown an abnormality other than the RSD so I guess it is all part of this disease. It is frustrating and exhausting. I hope you are able to build on your plan and can exercise more in the pool. Slow, consistent exercise has been the hallmark of any shred of wellbeing since my diagnosis.

Hi CoffeeBean, many on this form have anxiety, heart palpitations, panic attacks. The anxiety is not good at all for our condition. I take 3 pills a day 2 mg. of Lorazepam. It helps so much. I did have a bad ekg so went thru a battery of heart tests. All the involuntary organs are affected . Hope all is well. hang in thre Loretta