After my surgery for Thoracic Outlet Syndrome, I was released December 22, 2010 from care. I asked for Physical Therapy but was denied and told that I should recover just fine. I tried to return to my job as a swim coach for a local USA Swim Team just before the new year but it proved to be defeating. The pain was no better and I still could not move my left arm. All I was hoping and wanting was to get back to my life. By April 2011 I had to remove myself from my dream job as a coach and walk away to try and gain control of my pain and to ensure I completed school. Despite surgery and the pain, I continued to work towards my college degree. I was determined to finish. I graduated from Arizona State University in May of 2011. I was lucky, my professors understood my situation and I did not have to carry my books around to class and they made sure that I was able to be as comfortable in lecture as possible, even if it meant standing and getting help with notes from class mates and spending additional time with me making sure I had the notes I needed. I was even granted corrections on papers because they knew I could not feel my fingers on my left hand and was making certain accidental errors, as much as I tried to edit, I still missed here and there. I was lucky they understood and were so willing to help. I was still out work and getting bored. I was trying everything I could to maintain a normal life but the pain was not changing and I was losing mobility once again. This then made me depressed once again. I even tried self rehabilitation, having been a swimmer and having minor injuries from overworking, I had some idea of rehab and tried but was not succeeding.
By July of 2011, when I arrived in Boston for my brother's wedding, I weighed less than 95 pounds and was struggling. Everyone knew I was not well but it was not a time to deal with it, it was my brothers wedding. Shortly after the wedding my dad contacted me and asked me what was really going on. He and I had never been close and it was an estranged relationship but he knew his little girl was not doing well after the surgery. I had also lost my health insurance because I graduated and did not have a job with insurance. My dad and I spent the next 8 months fighting to get me help. No one in Arizona would lay a hand on me medically. They either were not familiar with the Thoracic Outlet or did not want to treat me because of the risk of malpractice because of the surgery and not having surgical after care. After contacting doctors and programs across the country it came down to two options. By April of 2012 I was barely walking and was hunched in fetal position most of the time. It was my choice, either John Hopkins in Baltimore, Maryland or UCSD in La Jolla, California. Although my dad had the ability to get on a plane at anytime and get to me if needed, I did not feel comfortable being so far from home if something happen, so I chose to go to UCSD. Still today I question if it was the right decision, but those I questions we cannot answer or even think about, it will only set me back.
After speaking with the doctors, getting my records ready, I was accepting to the UCSD research program on June 20, 2012 and arrived on June 22, 2012 for a chance to get my life back. I was part of their Thoracic Outlet research program and was hoping they would help me. It began with a ton of tests and ct scans, MRI's and x-rays and then began a pain management protocol. I had already tried both Gabapentin and Neurontin prior to surgery with no success, they only made me feel out of control and unable to function with no relief of the pain. I was put on anti-convulsants, I tried medications for osteoporosis which were also being used off label for nerve pain. Neither worked. They tried doing a nerve block where they went in through the front of my neck, within 12 hours I was back in the hospital for a day due to the uncontrollable pain. It was then that they diagnosed me with Complex/Chronic Regional Pain Syndrome, an auto-immune based Nerve disorder that cause constant nerve pain that feels like your body is on fire, your body temperature changes, you have swelling and discoloration of the limb(s). The CRPS also effects your mental state and has your body in a constant state of fight or flight mode. It is important to reduce stress with this disorder. At this point, I was put on Diluadid. It got to a point where I was taking almost 40 mg at a time with no effect. They then gave me Valium, that proved not be a good choice either, I was suicidal within 12 hours of taking it. I slept but woke up ready to die and still in pain. The program trial was for Lyrica and knowing my reaction to all the other medications, it was my medical decision and choice to elect not to go on to the Lyrica. I was dismissed from the trial and from care. The conversation upon exiting with the Neurologist was that they could not go any further with my case that due to the fact that the surgery was not done correctly, a muscle was left attached that should not have been, and it was a huge source of the pain that there was nothing they could do and they did not want involve.
I was devastated. I was once again being denied treatment and all I wanted was to feel better. I began looking for other doctors who were familiar with CRPS or RSD (Reflex Sympathetic Dystrophy) the full body form of CRPS. Lucky enough for me, I found another Neurologist right in La Jolla working out of Scripps claiming to cure patients with CRPS, which I again was a trial and error mistake. Before even walking into her office she had ordered a handful of medications for me to begin trying. She had my records but had not met me. As I walked into her office I was put on Alamax CR, DMSO cream, PeaPure, Low Dose Naltrexone (that was not so low dose), Dextromethorphan, Melatonin, Oxytocin, Vitamin D, and Ketamine Nasal Spray. Within 2 weeks we added Namenda (used for Alzheimers). As June rolled around, I had to head back to Arizona, I had been left alone by now ex in California to fight through all of this on my own and I did not financially have the ability to stay, but luckily this doctor treated patients out of state and my dad was willing to make sure I had flights to get back and forth for monthly appointments. Right before moving back, I had come home for a weekend and had a massive allergic reaction and was at urgent care and the Emergency over a 48 hour period due to the medications. I tried to get a hold of the physician and she would not see me or respond to me. After returning home I continued to try and get an appointment and was hoping for success but she rudely and unexpectedly discharged me from care stating I was mentally unstable and that I was unresponsive to her treatment and not following her protocol. Which was untrue. I continued to take the medications hoping to find someone at home to help me manage but once again no one would work with me. By August, I was out of medications and had no choice but to stop cold turkey.
I had been posting on Facebook and had found pages about CRPS/RSD and had been linked up with one of the 5 people that helped save my life. I was connected with Barby Ingle and the Power of Pain Foundation through one of the patient advocates. This is where my journey from hell takes another turn.
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