Trish Bondi - Philadelphia

I have had RSD since May 2000 following a minor crush injury to the base of my left big toe. Oddly enough, I did not get RSD after breaking my neck at the C2-C3 level in a car wreck in May 1998. Just goes to prove the theory that all it takes is a minor trauma to do the trick. I was fortunate to have been diagnosed early - within 4 weeks - but unfortunate to have been treated incorrectly - cast, ice, crutches etc. But then, I had my first lucky break; I become a patient of Dr. Robert Schwartzman in Philadelphia (I live in the 'burbs).

I am lucky that I am not paralysed from the neck injury; they did a case study on me at Jefferson Hospital on that issue and said I should have been a quadriplegic. I am somewhat of an enigma so you see just how charmed a life I have had. But, even though I am not paralysed, I do have numerous defects from the spinal cord injury. I have severe weakness on my left side, a weakened gait and some numbness which is a kind of paralysis, but too minor to deserve that name. The doctors call it paralysis but I don't! My neck is held together with 2 metal plates and 6 screws in each vertebrae, so I have very limited range of movement and I have been told that I have little chance of surviving another impact like the last one.

I currently take Topamax (a great alternative to Neurontin), Serzone, Celebrex and Zanaflex as needed. And I have to admit I have been known to take a percocet from time to time. Keep in mind I am still recovering from a broken neck and did I mention I have a herniated L4/L5 disk. I know a lot of people believe in NO NARCOTICS for RSD patients but I believe in Person/Plan case-by-case approach - don't hate me - I just feel that everyone has a right to their own opinion. Unfortunately, my case is very aggressive and has spread to all extremities and to my face. I went into the hospital in February 2001 for a Sympathetic Lumbar Continuous Block but, due to my disc problem, there were complications getting the catheter in. The RSD flared up and the catheter started leaking after 15 hours. We tried again 24 hours later and that one blew too. After 5 days they gave up and sent me home.

I went back in March 2001, when my spine had been given time to heal. That time I got 48 hours of catheter time but only 36 hours of meds because of pump problems. They had to pull the catheter because it was looking a little irritated and they won't risk any chance of infection; so I was shy of at least 48 hours of the treatment! But I got a lot of relief from it. I went from constant, extreme pain to sporadic, moderate discomfort. So I would say that is major improvement. And I definitely take much less Percocet. I also started Physical Therapy with Mark Butler in New Jersey, who has been treating RSDers for 20 years. My next treatment will be an Intra-Pleural Continuous Catheter Block, which I will be scheduling in the next few weeks.

I used to be a Senior Vice President of a computer company but now I am on disability and stay home, pretending to be a domestic goddess. I have 3 + 3 kids 11 to 20 (a Brady bunch situation!). Last but not least, I have an informal chat group at Talkcity.com called RSD-Retreat every night starting at 9:00 Eastern Standard Time until whenever - we have yet to stop before 6 am. All are welcome to join.

I am still in the midst of the battle but I know I have one hell of a General leading me. I figure God is keeping me here for a reason. I am doing this whole chat thing because I want people to know that there are treatments out there that can help ease the pain. I am tired of doctors telling people that there is nothing more they can do when they haven't yet done all they can.

I don't dare lose my sense of humour - When life hands you lemons, you make lemonade.

If you have problems finding Trish's chatroom contact her direct through this LINK.