Reflex Sympathetic Dystrophy Support Group

Got the news that surgery was officially cancelled everyone knew about it.

I asked the surgeon about next steps and if we can reschedule. He can't even put it on the books until her BP goes down.

I asked how far they are booked and was told July/August.

I am so scared because my mom is still in the early enough stages of RSD that her SCS will work like it should, just like the trial implant did in Feb.

If we wait too far it can spread to other areas in the body, it can cause immobility. It can get worse! Or the SCS unit will not give her as much relief. The deal with RSD is the earlier it is treated the better the outcome. .

I called the rep. who goes to the surgery who is works for the company called Boston Scientific. We had phone calls all morning long trying

to figure something out. The pain docs can do the surgery earlier once her BP lowers but their ambulatory place hasn't did them in years, so not sure.

There are other docs but they only have a certain amount of medicare patients and will not accept new ones. Plus all the others are probably just as booked.

I hit a brick wall today and cried, its been awhile since I broke down because I tend to be strong strong strong.

Then the rep calls me back with a name of a doctor. He called spoke to the nurse who said they are 2 weeks booked out. sounds a hell of a lot better then July August. He said at her BP recheck monday if her BP goes down get the doc to write a note. then send a referral to this new surgeon. Get an appt scheduled then once that is done she can schedule her in 2 weeks. So we are praying big time!

My mom is so tired of pain. She is hanging on by a thread. Back in Oct when this all started and she had no hope she wanted to not live anymore because she has no life but a life full of pain which is at levels I can't even imagine having 24 hours a day.

I started to have carpal tunnel in my right hand. I've had it before, got accupuncture it helped for 3mths. its back. It burns, my hand feels on fire, my hand cramps, it keeps me awake at night, sometimes I drop things because I don't have strength in my hand. I often wonder if it could be a form of RSD. I mean its my hand my mom and some of you have it all over. In your legs which help you walk...I just am beside myself today.

Anitraangel, I have high blood pressure too and have had it since I was a small child. Until the pain of this monster disease came into the picture, my doctor and I were able to control it pretty well with medicine. But pain can raise it and with this pain we are having a hard time keeping it down. My family has a history of strokes and heart attacks so it is critical. That is one of the things my pain psycologist is working with me to do: we have to keep it down with my mind. When I see him next week, I will see if he has any of the techniques online and see if I can share then with your mother. That, or I will see if he has them on tape or CD to send to her. She and I and I imagine a few others in our group share this and the risks are too high.

Sending both of you hugs and prayers that her pain be lower, and both of you have better rest.

Rev.

Thanks Rev. I appreciate it.