Finally, a diagnosis after two years - CRPS (complex regional pain syndrome), the newest name, or RSD (reflex sympathetic dystrophy), an older name, or causalgia, an even older name. Heidi's symptoms appear in several ways. She is stiff and it is hard to move. There are blisters on her hands and face. She has fibromyalgia, a common co-disease. Her face, back and extremities turn pink, red and purple. She is extremely sensitive to heat and light.
But the most difficult aspect of CRPS with which Heidi must deal is the extreme pain of the burning sensation. It is as though acid is constantly being poured over and inside of her body 24 hours a day, seven days a week. The pain is excruciating. There is no pain as deep and intense as that of CRPS. No pain as severe! On the McGill scale of
1-50, CRPS or causalgia is 42 and above continuously. Imagine having a finger or toe cut off. The excruciating pain at 39 or 40 is there and then with a couple of pills and a little time it all heals and is gone. You have a stub left, but no pain. Or imagine childbirth at 35-39 on the McGill scale - 3 - 48 hours of pain and you have a bundle of joy and a new set of problems, but no pain. In fact, it seems like a woman forgets the pain. Fibromyalgia, chronic back pain, non-terminal cancer are all in the 20s on the McGill scale. Pain is more continuous, but at one-half the level and it fades in and out for these diseases. Of course, one must recognize that Heidi has fibromyalgia, which means pain heaped on pain. Arthritis, a toothache, or a fracture rate in the high teens on the scale. Arthritis is relatively continuous; a toothache can be continuous until you get to the dentist; and a fracture is set and goes away in a few days, then, it is just the annoyance of the cast. All three of these health issues have differing lengths of pain time, but not necessarily continuous, there are possibilities of relief, and they are at less than half of what Heidi deals with 24/7. This is what Heidi's daily life consists of - Pain! (A more detailed description of CRPS as a whole can be found in another section of this website.)
What can be done?
If the doctors had initially acknowledged or understood what they were seeing, Heidi could have been healed with no residue - a total remission. A diagnosis of CRPS would have had to occur and treatment been administered within the first three to six months at a maximum. But that did not happen and Heidi's CRPS actually became an advanced case very quickly.
Basically, using a simple analogy, Heidi's nervous system has gone haywire much like a computer doing crazy things. You may start with just turning off one program. If this does not work Then if all else fails you turn off the computer to reboot it. Low and behold the system resets itself and functions correctly. Sometimes, there is more going on in the computer and it will only partially reset itself. So, you keep rebooting. If it continues to act up you shut it down for a longer period of time, and reset in hopes that the systems will be devoid of any viruses or problems and finally reset themselves. This example is very simplistic, but a good analogy.
Other countries such as Germany and Mexico are further ahead in the understanding of CRPS and comprehensive treatments than the United States. However, three places seem to lead the way here in the United States. The RSD/CRPS Treatment Center and Research Institute in Tampa, Florida was the first institution devoted solely to CRPS. Stanford University Hospital has recently been developing a more comprehensive program. Finally, the California Pain Medicine Center (CPMC) headed by Joshua P. Prager, M.D., M.S. near the University of California, Los Angeles Medical Center (UCLAMC) which has been around fro over 15 years. Stacie and her Mother compiled books of Heidi's medical progress that were 2½ inches thick, utilizing the documentation and photographs Stacie had been collecting for two years. She delivered these to both Stanford and CPMC. Two days later, she got a call from CPMC telling her to make an appointment for Heidi as soon as possible.
Heidi saw Dr. Prager in consultation a week and a half later. At the end of the consultation, Dr. Prager asked her to make another appointment for a nerve block to assess her responsiveness. Within a few minutes, after the block, she held her arm up to her mother and said, "Touch me mother. You won't hurt me. Touch me." For the first time in two years Stacie could touch Heidi without hurting her. Dr. Prager was extremely pleased with Heidi's response to the block. Then, it was on to the psychologist for an assessment. Heidi left her office saying, "It isn't in my head. I am not crazy. It isn't in my head." The psychologist told Stacie and David that she was recommending that Heidi be admitted to the next treatment program beginning at the end of September.
Dr. Prager is hoping to manage and minimize the pain. Before being able to enter their intensive rehabilitation program, they have to get the pain to a tolerable level, which will require testing different pain control avenues. Dr. Prager has decided at this pint to 10 a ten day ketamine program, where they will use a iv to deliver large doses of ketamine of several hours to see if it will reduce her pain. Hopefully, the pain will subside and the intensive rehabilitation program can begin. This will be a four-week daily regiment with the end result of, hopefully, enabling Heidi to return to a somewhat normal life.
The program consists daily interventions, which may include nerve blocks, ketamine infusions, physical therapy, psychological therapy, nerve stimulators etc. However, it might take one, two three four times through the program and even then it will not be complete eradication of CRPS.There is no cure, only the hope of remission. Because of the intensity and distance involved, Heidi and her mother will need to find lodging near to UCLA that can accommodate Heidi's special needs. The program is highly expensive and because these doctors are working to get CRPS recognized by the United States medical establishment and they are trying to avoid undue influence, they do not accept insurance. This is where Heidi's hope is at this moment - reduction of pain is the goal. Then, another assessment is performed as to the effectiveness and plans for the future.
A final possibility in addressing CRPS is a ketamine coma. This procedure is not performed in the United States and at this time seems to be an extreme measure. It is only done in Mexico or Germany. The RSD/CRPS Treatment Center and Research Institute in Tampa, Florida is the place one needs to go to start the process for referral to Mexico for a ketamine coma. This procedure basically is a ketamine induced coma that will last for seven days. During that time, the nervous system shuts down much like your computer when it goes to sleep. When the patient is brought out of the coma, the nervous system generally reboots itself, returning to normal. But this procedure may also take a couple of times through to achieve the desired end result.
All of these solutions involve a great deal of money. This is the reason that the site is being built - to enable people to understand the enormity and severity of the issues of pain around CRPS - to enable people to understand who Heidi is and what exactly she experiences on a daily basis. This site has been build to let people know how to help with their love and support as well as their financial assistance so that Heidi does have a future. Heidi is asking others to join her on her journey of hope - her journey out of pain.