NeuroTalk Support Groups - Newly Diagnosed & Overwhelmed!!

NeuroTalk Support Groups (https://www.neurotalk.org/)

- Reflex Sympathetic Dystrophy (RSD and CRPS) (https://www.neurotalk.org/reflex-sympathetic-dystrophy-rsd-and-crps-/)

- - Newly Diagnosed & Overwhelmed!! (https://www.neurotalk.org/reflex-sympathetic-dystrophy-rsd-and-crps-/182137-newly-diagnosed-overwhelmed.html)

Quote:

Originally Posted by RichS (Post 957385)

After waiting at least a month I was finally able to get in with a Pain Management doctor. I did lots of research and he appears to be very familiar with RSD. Since my last visit to the forum my foot seems to have gotten just a very small amount better. The color is still bright red, but the swelling has gone down just the smallest amount. The bed sheets don't bother me anymore, and really I can tolerate most thing touching it. As neurochick mentioned before, he said its very possible it's not RSD. His plan of treatment is two rounds of cortisone shots to the S1 nerve. If that doesn't work he will do two rounds of cortisone in the sympathetic nerve. That's all fine to that point. What I'm concerned about is after that point, he went straight to doing the implant. Hopefully It won't get to that point. Isn't that option a little too soon after trying the shots? Seems like I read somewhere to avoid an implant at all cost?

My first PM also suggested an SCS after my first 2 lumbar sympathetic blocks did not achieve relief. When I told his nurse practitioner I didn't want an SCS, she told me that was all their service could do for me. I found a different PM and haven't looked back. I've had to travel over 2hrs. to see him but it was worth it to me. Good luck.

What did your PM doctor recommend after the lumbar blocks? I'm really trying to stay positive and hope it is just that the nerve is badly bruised like my doctor said could be a possibility, but just curios what the next steps are just in case.

Quote:

Originally Posted by RichS (Post 957588)

Sadly, after my lumbar blocks, my pm had passed me off onto his nurse practitioner who had originally thought I had MS. She told me that the only thing their service could offer me was a spinal cord stimulator. So in other words, they were 2 months into my diagnosis and wanted one of their partners to implant an SCS. When I said no, they said there was nothing else they could do for me. I guess there was nothing else THEY could do. But I found a new PM who offered me much more in the way of meds, treatment & support. It's important to find someone who has a number of treatments to offer you. Good luck.

Hello and Welcome to the forum

I am sorry to hear of your misfortune. However, this is a great place to communicate and share with people who care, and more importantly, understand what you are going through.

Although you do not have a diagnosis at this point, please know that there is no magic bullet or quick formula to resolve complicated medical issues like RSD. What works for one person might make the next person worse. Keep a level head and seek out qualified pain doctors ASAP.

In my personal experience, I've found that it is best to double check with your insurance company about doctors you would like to see. Many times your network listing will omit doctors that one phone call may reveal to be a in-network provider.

Best regards & good luck,