Need advice!!
 

Hi everyone! I am hoping to get some advice from others about my situation. Hoping that maybe there is someone else out there that can relate. I went ahead and got a SCS implanted in January. Long story short, my surgeon closed up shop and left town 10 days after surgery. I ended up having issues with the generator moving and found another doctor who relocated and anchored my generator correctly in March. Things were going along ok until I went to the courthouse to renew my license plates and one of the officers wasn't paying attention and zapped me with the security wand. That ended up frying out my SCS. So, in June, I had the whole thing removed and a new SCS implanted (quite painful). So, I had 3 pretty intense surgeries within 6 months. I have not really been able to figure out if the SCS is working for me or not as I've had so many complications. On top of that, my second surgeon never followed up on my third surgery, so I've now had to switch to a third surgeon (this time I went for a major university hospital) who I will be seeing on Thursday. Because of no doctor followup, I've been without any of my medication for approximately 6 weeks. Luckily, I had some backup pain meds left but because I hardly had any left, I've had to seriously reduce the pain meds I normally take which has resulted in severe migraines from the pain and stress, requiring ER visits to relieve. I am still unable to sit completely on my behind due to pain, when I lean back against things, it feels like I am leaning against two metal bars and I am in more pain now than I ever was. On top of that, for the past five years, I have had a major flare from my CRPS every November. I cannot even imagine being in more pain than I am now. At this point, I am almost immune to Percocet and Vicodan. I get extremely ill from Oxycontin and Morphine makes me sleep for 18 hours a day. I've been trying to do some research on my own and I am wondering if a pain pump would be my next option. Has anyone out there gotten a pain pump and had good results? Am I the only one out there that has had such a nightmare with SCS? I have accepted the fact that I will probably never have the life I once had, but at this point, I have no life. I need to find some kind of relief somehow (and I need to find a good doctor). Any help anyone can offer would be greatly appreciated!!

Welcome Shelby,

Sorry to hear about all the problems you have been having with Dr.'s and your stim. I would like to suggest you copy and paste your thread over to scs and pain pump:

http://neurotalk.psychcentral.com/fo...ysprune=&f=118

As far as a good Dr., may I ask where you are located? Or you can look on the RSDSA.org site.

Regarding meds, there are SO MANY options. You must find a doc you trust to work with asap. A very low dosage of a time released opiate should be considered since you've developed a resistance. A dosage of 10 mg every 24 hrs would not likely put you to sleep all day.

You might also want to look at Dr. Hooshmand's 4 F's diet for RSD. I was sleeping too much, and a major reduction in simple carbs changed my energy levels dramatically.

Other things to try for non narcotic pain relief--Lidoderm Patches, warm bathes with Epsom salts, warm water pt or exercise, massage, etc. There are lots of good tips here on the forum that work for different people. An invaluable tip I picked up is to use a down pillow in the car when I'm being driven any distance as it helps protect my arm from vibrations, for example...

Rsd is so different for everyone. It sucks, but it's basically Trial and error until you find what's right for you. My scs seems to have worked out, but others haven't. I had zero success with neurontin. Others do great with it. Right now, I take topomax, welbutrin, Valium for jitters/sleep issues, and dilaudid( which weareweaning out), and naproxen. weaning down from pain meds seems strangeafter all this time. That's exciting for me! I also take some supplements b-12, vitamin C,and calcium/vitD due to such poor bones from the rsd. Anyway, hopefully you will find a combo. Lots people like creams and patches but they never worked for me.

Oh also never leave the house without pillows. Two or three different sizes. Ican always use them for something lol.

Hopefully we can keep spreading the word of this awful disease and People will start figuring out it needs attention.

Feel better soon!!!

:hug:
:)