Hi Kris,

 

The pain you describe is very familiar to me although the SCS has greatly reduced the leg pain for me. The flare ups you mention are also typical and can sometimes be traced back to activity and sometimes not.

 

I had a mylogram prior to the surgery that is the most likely cause of my AA and like you had a horrible experience. My Dr. has told me that an MRI with contrast is the definitive diagnostic tool for this type condition. There is NO WAY I would ever consent to another mylogram! Because of the SCS I can no longer have an MRI either but to be honest I don't know what the point would be now.

 

I am also a member of COWFA but more just a reader than a frequent responder. The COWFA group tends to be a little on the negative/complaining side of things but there are many very experienced with the various treatments available so worth staying in touch.

 

There are quite a few medicines involved in my current regime as I mentioned in the previous e-mail with perhaps the most effective being the Fentanyl patch. I have been on the lowest dose available for slightly over a year and still getting adequate relief. Unfortunately pain free is not an option so making it manageable is all we can do. The combination of Neurontin and the SCS does that for my leg pain and the Fentanyl for my back pain. The Flexeril helps cut down on the muscle cramps/spasms.

 

When first diagnosed I too was in despair and confused but I think coming to grip with the fact that controlling the pain to a somewhat bearable level is what I needed to seek rather than a fix or cure helped. I think researching and understanding what is going on also helps. I know that I will pay for high levels of activity and not so much immediately but often the next day and I prioritize based on that fact.

 

I hope this helps a little, and researching via the internet will give you loads of information also. I hope you have a low pain day.

                                                            David