Little did I know that the doctor I met late fall 2004 to discuss implantation and medication to use in my intrathecal pain pump would be the one I would return to several years later 2011 ~ this time trying to figure out what was wrong with my pump. The difference this time around is instead of going for an opinion as I did in 2004 I was sticking as a patient and honestly I am so very thankful I did.
I have battled Reflex Sympathetic Dystrophy which is now known as Complex Regional Pain Syndrome which was diagnosed April 1990 ~ approximately six weeks after my 19th birthday. I knew my life was going to change but honestly I had NO idea how much or that there would be numerous doctor appointments and treatments as well as surgeries. It has been quite the learning experience for sure ~ a wide and sometimes rude awakening of how pain patients are treated not only by the medical profession but by family, friends, coworkers ~ dealing with the changes your body goes thru while taking medications and treatment. I can honestly say I have no idea what life was like prior to RSD.
I had reached a point in my treatment that my local doctor suggested implantation of an intrathecal pain pump. Since he did not know much about them he referred me to Dr. Atif Malik and I was immediately impressed as he listened and heard what I was saying. He also recommended a different medication which he thought would work better for me and referred me to a surgeon. I remember walking out being so excited ~ finally a doctor gets it! I ended up having the pump implanted and it was the easiest surgery ever!! That was the last time I saw Dr. Malik and Dr. Winters – or so I thought.
The time came for my pain pump to be replaced in 2010 and the surgery was done by my current docs in Hagerstown and let’s just say that was by far one of the worst surgeries and probably the most difficult times dealing with RSD. I ended up talking to a Medtronic rep and said oh if only Dr. Winters was around – and he said he is though it is his brother – why don’t you go to see him. Well I saw him May 2011 and he then referred me to Dr. Sherlekar for a dye test to check the patency of my catheter~ and that Friday when I had it done I walked in and who was there, Dr. Malik and literally you could have bought me for a penny. I was so impressed, happy that the doctor I had met so many years ago was now practicing much closer to where I lived – and the BEST part was they figured out immediately what was going on with my pump when I had been battling with other docs for over 18 months (turns out I was right but what do we patients know?)
Dr. Malik then suggested the pump be replaced that was done in September 2011 and I have been a patient with American Spine ever since! I have stuck with these doctors because they GET IT! These doctors treat me as a person not like I am a robot ~ they talk to me and listen ~ and hear. They are open to the various ideas that I have regarding new treatments out there for RSD and they also know that I am willing to do what is needed to calm this beast down. The days when I am not at my best and need another voice i.e. my mom who is my best friend and advocate ~ they welcome her and treat her with respect where many doctors would not permit her to be there. They care and get frustrated when they hit a brick wall and will yet again go to their bag of tricks in trying to figure out that next treatment which may just be the answer.
I can honestly say I am so very glad that I have stuck with these
docs ~ Malik, Roh and Sherlekar and feel for once we are all on the same team ~ and I know my docs see Shannon the person and not ‘you have RSD and by the way your name is Shannon’ ~ that means a lot. Thank YOU for always going out of your way ~ and sticking by my side thru thick and thin. You are truly the best!