Hello, my name is janae cook. I am married to Michael and we have been married almost 17 years now. Together we have 2 beautiful teenagers. Our oldest is Shyanne and she is 15. Our youngest is Alyxandrhea and she is 13. This last year I decided to go back to work. I was working at an elementary school as an individual service provider. This is a position where you work with kids one on one to help them function in a classroom setting. The kid I was working with had many anger and behavior issues. I carried a radio because he had a tendency to run and would throw things, spit, or hit at anyone who got in his way. He decided to take the radio out of my pocket and when he did that I told him I was going to take it back from him. He got very angry with me and went to my side and bend my middle finger backwards. When he did that I thought it was sprained. I tried to go to the denainahealth clinic but they were too full and couldn't see me until the next day. When they saw me they saidI had torn ligaments I was put in a splint by that weekend I had numbness and tingling up my entire arm . I went back to the clinic and they said that I had trauma inducedcarpal tunnel. I was given steroids to try to take down the inflammation the next week I went back for a follow up and there was still no change. My fingers would turn blue and white they were cold I had sensitivity issues. they were very sensitive to the touch . the third week I went back for another follow-up . There was still no change I was sent to a doctor that was an orthopedic surgeon. He brought up the idea of complex regional pain syndrome CR PS he referred me to a neurologist the neurologist said that I had carpel tunnel syndrome when I went back toThe orthopedic surgeon he was surprised by this and said that he could do the surgery but he didn't think the carpal tunnel syndrome surgery would give me any change But I was hopeful that there would be change so I chose to do the surgery. there was no change when I went back for my follow up I told him that I was still having sensitivity issues. My fingers were still turning blue I had longer hair on my fingers. He told me that it was not his expertise and he told me to come back in a month. halfway home I realized that he had not even change the bandages. I was frustrated by this and I spoke to my case manager for workers comp. She told me that I was entitled to a second opinion. I went and saw another orthopedic surgeon he said that I had CR PS. he put me on a Nerve medication to see if there was any change in the pain but there was no change and a month later he referred me to a pain management specialist . when I went and saw her my left hand was 9° colder than my right hand she gave me a stellate ganglion nerve block. this was an injection in my neck that was meant to take away my pain so I could do better at physical therapy. I had no relief from the nerve blockI did another nerve block two days later and there was still no relief. from then we decided to start experimenting with different narcotics to see what was going to work for physical therapy. after many ER visits from reactions to different medications we finally found what was going to work I started physical therapy and things started to improve. workers Comp. wanted me to do an IME which is an individual medical evaluation because of how complicated this case was . I did my IME and almost 2 months later it came back that the doctor thought it was a somatoform disorder which meant that basically it was in my head. Workers Comp. terminated my treatment and the doctor also terminated my treatment . Physical Therepy wrote a letter on my behalf saying that it was wrong and that I had CR PS along with thoraci outlet syndrome and that I needed to be in physical therapy 3 to 4 times a week . although the doctor had terminated my treatment she signed that letter to weeks laterso basically she contradicted herself . I had no choice but to go to the native clinic . about a month later I finally got in through physical therapy through them they sent a referral up to Anchorage for the native hospital in October and it is now January and that still has not gone through . The physical therapists are amazing but I still need a doctor to help me manage the pain. because of all this our finances have gone downhill. Michael cannot work because he is driving me to physical therapy 3 to 4 times a week along with doctors appointments . recently I sprained my ankle and that caused the spread down my leg. this disease has caused me to be in a wheelchair we don't know when I'll be able to walk again we have to get the disease under control . we are finally broke enough to qualify for Medicaid . because of Medicaid we are just now seeing an amazing doctor who agrees with the CRPS diagnoses along with the thoracic outlet syndrome diagnosis . we are now starting to experiment with narcotics again to see what is going to work because the old medications that I was taking are not working anymore. so far we tried one and I had a reaction to it so it's back to square one again.I believe that this doctor will be able to help me she is world-renowned and she is absolutely incredible we are kind of in a stuck position. Michael is trying to find an evening job but truthfully we are stuck. if Michael finds a job, which we know he needs to, we will lose the Medicaid and therefore I will lose my medical care. We will be able to pay most of our finances but my medical condition will start to go downhill. We don't know what to do . CR PS is a disease that attacks your nervous system because it attacked your nervous system it also attach your muscular system . it attacks the way you think the way you talk it makes me dizzy it makes my vision blurry I cannot drive anymore and now I cannot walk. This disease is not curable it is a disease I will follow with me for the rest of my life we are hoping to keep this doctor so that she can have me get a better quality of life and also my physical therapy. Even if I can regain function in my hand and in my leg it can always come back . I need help we need help as a family my kids are suffering because they are watching me go through this they are watching me in excruciating pain every day I. On the McGill pain scale, CRPS is the highest ranked on the pain scale. It is higher then child birth, amputation, cancer, and fibromyalgia. It is more horrible then you could imagine. I feel like I'm on fire. I get rolling spasms through my body. It throbs and I feel like my skin is being ripped off. I can't shower anymore because the water feels like pins and needles coming down on my skin . when I go outside even if it's 70° outside I have to be bundled up because the cold hurts me.michael is struggling because he financially can't take care of us and he is also watching me go through pain as he pushes me around in the wheelchair when we need to be out .I have finally applied for Social Security insurance but it can take up to four months for an answer and there is a 70% denial rate in Alaska right now so the first time we are denied we need to appeal it right away. we are trying to get an attorney and the attorney is reading over my paperwork to see if he will take the case . in the meantime we are on the verge of losing our home losing our truck and losing everything we have ever earned . of course our home is our top priority and it would be devastating to lose it . We have shut off notices like crazy. we are asking people that we know and that we love to please help if they possibly can do you donate so that we can keep our home and we can keep our doctor. Like I already mentioned, if Michael gets a job and we lose our medical coverage. Like most couples Michael and I always thought that if one of us got hurt that we can rely on the other ones income but we never thought of the possibility of neither one of us being able to work because we have to rely on the other one for help . Michael is being wonderful he is driving me everywhere I need to go he is taking care of all my medical appointments and he is also running the kids around to all of their appointments that they need to go to because I can't drive anymore. my kids have been wonderful. they have been pitching in around the house helping Michael cook dinners and helping do all the housework and all the chores because I can't do those anymore either . our life has been completely turned upside down by one small child bending my finger backwards . please if you can please help donate to our cause. we would greatly appreciate it we need all the help we can get because we don't want to lose our home and lose this wonderful doctor . thank you so much to everybody that has already helped us out and that is willing to help in the future we love you all and thank you also much. Here is more information about CRPS: About CRPS
Complex Regional Pain Syndrome (CRPS), also known as Reflex Sympathetic Dystrophy, is a chronic neurological syndrome characterized by:
severe burning pain pathological changes in bone and skin excessive sweating tissue swelling extreme sensitivity to touch [For a complete description of CRPS symptoms, please read the Diagnosis section of the Clinical Practice Guidelines section of this website.]
There are Two Types of CRPS - Type I and Type II
CRPS Type I (also referred to as RSD) - cases in which the nerve injury cannot be immediately identified CRPS Type II (also referred toj as Causalgia) - cases in which a distinct "major" nerve injury has occurred CRPS is best described in terms of an injury to a nerve or soft tissue (e.g. broken bone) that does not follow the normal healing path CRPS development does not appear to depend on the magnitude of the injury. The sympathetic nervous system seems to assume an abnormal function after an injury. Since there is no single laboratory test to diagnose CRPS, the physician must assess and document both subjective complaints (medical history) and, if present, objective findings (physical examination). Criteria for Diagnosing
Complex Regional Pain Syndrome Type I (RSD)
The presence of an initiating noxious event, or a cause of immobilization Continuing pain, allodynia, or hyperalgesia with which the pain is disproportionate to any inciting event Evidence at some time of edema, changes in skin blood flow (skin color changes, skin temperature changes more than 1.1°C difference from the homologous body part), or abnormal sudomotor activity in the region of the pain This diagnosis is excluded by the existence of conditions that would otherwise account for the degree of pain and dysfunction Complex Regional Pain Syndrome Type II (Causalgia) The presence of continuing pain, allodynia, or hyperalgesia after a nerve injury, not necessarily limited to the distribution of the injured nerve Evidence at some time of edema, changes in skin blood flow (skin color changes, skin temperature changes more than 1.1°C difference from the homologous body part), or abnormal sudomotor activity in the region of pain This diagnosis is excluded by the existence of conditions that would otherwise account for the degree of pain and dysfunction.