Chiari Malformation is an unbelievable Neuro problem that only affects a few americans each year in comparison to the population. However, it is a devastating problem for its victims. I have talked to so many people over the last two years that are fellow Chiarians. Some that have had results with treatment and others that have not. Over all the recurring theme seems to be the difficulty in finding a Doctor that will listen and take things into consideration. I ran into this problem myself. This is my soap box.
Either the Doctor was uneducated as to what Chiari is or they were afraid to treat it. That is right, they were afraid! Why is this? Well here are some of my ideas about that question. One; most medical books used to teach our doctors only have a paragraph or two about Chiari. See Merc Med Manual. Two; Most doctors in this country are not in it for the patient, therefore they verse themselves in the every day treatment of every day medical problems that are common and easily treatable. Three; There isn’t a pill to fix it or make the symptoms go away and there never will be. Four; There is a stigma of “the headache patient” that has been created in our society. (There is a lot that can be said about that one and I do not have the time nor the space here to address it properly). Five; Neurology is a specialty science and most neurologists don’t want to admit that they are not the person for this job. (This is another one that can be discussed for long periods).
So what do we as Chiarians need? I think that awareness is at the top of the list and there are some great folks out there that are doing just that. Raising awareness through websites, walks and even going to the government and petitioning for more education. I commend those folks and pray for their success. Research is the next big one and a subject all of itself. Also we need our doctors to start thinking of the patient again. So many people are lawsuit happy that some doctors are so busy protecting themselves that they miss the big picture or are afraid to delve into the patient’s problems. Or they think they know it all. They want to write a script and send them to someone else. Again this comes around to “the headache patient”.
So for those out there that are looking for help I leave you with this. Be persistent. Research the condition and the doctors that treat it. They are out there. Educate your own doctor as well, so that they can understand your needs, and if they don’t want to listen then find a new doctor. Everyone can learn something new. Early diagnosis and early treatment are key to life with Chiari. I am a testament to that as are many others. I have found several articles by various doctors that express this opinion (see article attatched to this link: http://store.wisconsinmedicalsociety.org/_WMS/publications/wmj/issues/wmj_v101n8/Nash.pdf ) and I for one will stand by it. How can I not, just read my Chiari diary. Also educate your loved ones as to your condition. There are articles out there that can help with this. Educate them so that they can understand your situation and empathise with you. This can help them help you. (Attatched link to Chiari Handbook for patients and their families: http://www.asap.org/handbook.pdf )