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Old 04-15-2012, 03:27 PM
Jenknits Jenknits is offline
Junior Member
 
Join Date: Apr 2012
Location: NYC metro area
Posts: 14
10 yr Member
Jenknits Jenknits is offline
Junior Member
 
Join Date: Apr 2012
Location: NYC metro area
Posts: 14
10 yr Member
Confused Newbie to group, not RSD

Hi, my name is Jen and I have read posts on this site for a long time and finally decided to join. I have had RSD since May 2009 when I broke my left ankle, tore tendons & ligaments (my 55 lb dog accidentally knocked me off balance when I was walking down the stairs in my house). I was fortunate that I was at a PM Dr's office 2 weeks after my break. I had no idea what RSD was, and thought he was wrong when he was disgnosisng me. I just thought I needed time to heal. I half heartedly did what the Dr said. I was still working 70 hrs a week and figured I was slow to heal because I wasn't resting enough. I was very fortunate that although I had no idea what RSD was, I ended up being referred to one of the best RSD Drs in the country, who practices at the Hospital for Special Surgery in NYC. He is amazing. A year to the day after I met the PM Dr, I woke up and thought I had re-broken my foot. I had the orthopedist X-ray & CT it, but everything was negative. The ortho said, "This is RSD". I had my 1st lumbar sympathetic block the next day (5/17/2010). I got no relief from any blocks -- and I had many -- until 10/25/2010 when I had a popliteal block (behind knee). Long story short, I was given improper discharge instructions from the hospital and re-broke the same ankle (much worse) as I was leaving the hospital and going home from the popliteal block. I haven't worked since that day (10/25/2010). The 2nd break caused the RSD to get expotentionally worse, and spread throughout my left leg. An epidural catheter in 2/2011 caused the RSD to spread to my lower back, pelvis, hips and right leg. My partner, who was driving, and I were rear-ended by a "distracted" (texting) driver 12/18/2011, while we were stopped at a red light. She hit our car going 40 mph and totaled our car. Thankfully my partner wasn't hurt, but the whiplash and soft tissue injuries I suffered have caused my RSD to spread to my upper body. My RSD has caused significant central nervous system involvement. I am really at a low point now. I developed spastic torticollis 3 weeks ago (neck bent over so left ear touching left shoulder) and had Botox injections to help Wednesday (4/11/2012). Now I'm miserable. The shots have caused a major flare. My PM Dr said the injections could "make things worse before they get better" and I am just struggling with this regression. For me, if I have a flare (2 steps back), I never return to where I was before, but only get back to 1 step ahead -- still 1 step behind where I was when I started. I should add that I have tried just about every treatment, and everything has only made things worse. I even went to the Chronic Pain Management Rehabilitation Program at the Rehabilitation Institute of Chicago. There were 12 members of my cohort that started the program with me, and only 4 who graduated. I was 1 of the 4 people who finished. I have done ketamine infusions (twice, 5 day, inpatient, central line), lidocaine infusion (inpatient, 5 day, central line), more blocks than I can count, PT, meds, biofeedback, etc. My PM Dr here in NYC at Hospital for Special Surgery and the Dr at Drexel who specializes in RSD, -- can we use Dr's names ? -- both recommend a ketamine coma at this point. I am leery of this, for a variety reasons. I feel like I have lost my life. Its not just the pain, but the financial stress, the medical conditions I now have because of RSD, the psychological implications, the strain on relationships, the effectused being "differently abled" now, etc. Up until 10/25/2010, I was working 70 hrs a week, had a wonderful career and thriving private practice. I was a socially active person, involved in charities, an active member of my church, and had an avid social life. Now, I wear custom made ear plugs when I leave the house because I can't tolerate noise/ sound. I only leave the house to go to medical appointments (although I do go to gym everyday, except during this torticollis spell), because I feel like if I am going to be in pain, at least at home I can control my environment and be "as comfortable in my discomfort" as possible. Thank you for letting me get this all out. I guess part of all of this is my grandmother died 6 weeks ago. She and I were really close. Although she did not raise me, she was more of a mother to me than my biological mother is. I lived for my grandmother. With her, I always knew everything would be ok. Now I don't feel that way. And I feel everythIng is pointless. Thanks for listening/ reading.
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