Hi, I am currently in the process of what my doctor calls ruling out the chiari and everything which is quite frustrating. He is one of the best neurosurgeons in my state and now he wants to send to me to a neurophysiologist to determine if I have real pain or not… Which is quite rude to me because now I have to wait for the appointment and wasting time when I could have surgery. I am only 16 and I am in such pain. I have been in the ER 5 times and my doctor says not to go there but how I am not when the pain gets unbearable?
Please let me know if you where ever sent to a special doctor to determine if your pain is real or not?
Sydney,
Of course your pain is real. However, if your pain is neuropathic (numbness, shooting, throbbing or burning) there are nerve conduction tests that can be performed to assess whether there is damage to the myelin sheath surrounding the nerves. If it is neuropathic pain, then Chiari surgery will not alleviate it. Hence, it would be negligent of your doctor not to rule out the source of your pain as being neuropathic because you would have the surgery and your symptoms would continue. At the same time, if your nerve conduction studies are normal and you have the structural dynamics of Chiari – like herniated cerebellar tonsils – it will, by default, be more evidence that the cause of your pain is the Chiari Malformation.
Your Doctor wants to rule out Chiari because the surgery is a very risky last resort. Even though he is the best in your state, he probably does not want to do the surgery unless he absolutely has to because he does not want to mess your life up even more but he would never admit that. Not many NSs can do this surgery well. So, instead, he makes you feel as if your pain is not real.
I can really relate. I had an MRI that revealed the structural aspects of Chiari two years prior to having my surgery. However, because I had a bad case of Lyme disease two years before which, in a sense triggered or dovetailed with the Chiari, I had to take tons of anti-biotics until there was no evidence of Lyme bacteria in my system. I spent most of those two years alone in a dark, quiet room with raging headaches, brutal fatigue, and lots of other neurological symptoms. Then, once I was cleared for surgery, they found a genetic liver disease during my pre-op physical and I had to delay the surgery even more and get a pint of blood taken every week for a few months which made me anemic and even sicker! But, I had to make sure that the cause of my symptoms was not Lyme disease or the genetic liver disease. Otherwise, I would have gone through this very, very difficult and risky surgery and still been sick. So, I can really empathize with what you are going through. At the same time, I encourage you to be patient. Stay strong even though the pain is crushing. It would be an absolute nightmare to go through this surgery and then still have the pain – wouldn’t it? Hang in there.
The first neurosurgeon I saw was considered “one of the best in the state.” He graduated from Harvard! He told me that my Chiari Malformation was not the cause of my problems. When I saw him, I was using a walker to move around. I had a sprained wrist from one of my many falls. I had on “coke bottle” glasses, because my vision was so bad. My blood pressure was through the roof, because I was in so much pain. Again, he told me NONE of that was from Chiari Malformation, and he suggested I see a psychologist and a pain management doctor. When we went to another neurosurgeon for a second opinion, he scheduled surgery as soon as he saw my MRI. After my surgery, he told my family that if I had followed the advice of the 1st neurosurgeon, I would have died in less than 2 years. PLEASE go get a second opinion. I am only 37, and this almost cost me my life. PLEASE PLEASE PLEASE get a second opinion.
I had some sort of test done that I swear is a form of torture somewhere. I think it's called an EMG or EKG? They poke you with a 24-26 gauge needle and run an electrical current from the skewered nerve cluster to the brain and back. It tests how fast the signals are being processed, if at all. That was the defining test for both of my surgeries, confirming where I was reporting nerve pain or tingling and coldness. With crappy results from that test(slow or no signal return?) the drs will have to take your pain more seriously. (It is also satisfying to see the sadist performing this japanese horror film scene on you get kicked or slugged by your body reacting to the shocks. :))
Has anyone else had this test and know what it is called?
Sidney,
I am so sorry that you have to deal with all of this. Of course, you are confused. Chiari is a very, very confusing “event”. Even for people trained at Harvard, like your NS it is confusing. Some of the greatest minds on the planet are completely mixed up by this disorder. The neurological community is at war trying to come up with accurate diagnostic criteria for Chiari but there is so much we do not know about our brains. We can probably explain more about the moon than we can our central nervous system. And, with Chiari, each person presents structurally (MRI) and symptomatically - so uniquely - that it is nearly impossible to reach a consensus on what to do and when to do it for the doctors. The diagnostic criteria of 5mm herniation was decided by radiologists who do not even see patients! Talk about being backwards!
About the psychologist, it sounds like you are suggesting that going to a psychologist is to convince you that you do not have the pain. Again, that is the dismissive voice of the NS in your head speaking. As a psychologist (meaning that I am one), I think that it is probably being suggested as a resource to help you negotiate the pain until an accurate diagnosis and a plan for helping you, like surgery, can be ethically made by the surgeon. Plus, if the psychologist is any good at all, he or she will involve your mom and help her get over her fears which sounds like is holding up the process as well. A good psychologist or clinical social worker would be a real asset for you here.
If you came and stabbed me in the thigh with a sharp knife, I would no doubt have pain - right? However, even in such an obvious case of pain (no MRI, no EMG test needed), there would be a psychological element to that pain ... there has to be because my brain would be processing the signals from my body. A psychologist, who is trained in helping people with pain management, can help sort of train the brain how to respond to pain rather than react to pain ... which are great skills to have throughout life! So when you stabbed me, since I have been to a psychologist trained in pain management, once my initial screaming and shock was over because a strange 16 year old young woman just randomly stabbed me, I would hope that I could use some of the tools that I have learned to deal with the pain of the stabbing. I am pretty certain that I could because I just had a hole cut out of my skull a little over six weeks ago and I have been using these techniques every day … and every day for the two years prior to my surgery.
Also, the one thing that NSs are totally incapable of is empathy ... because they have to be .... otherwise they would not be able to cut into people's brain and spine. They have to turn the emotions valve off completely. The whole job of a good psychologist is to empathize and help you feel validated in your suffering. Ideally, this would come from our parents but it is hard for parents, like your mom, to do this because they have trouble facing the fact that their child is suffering so much. Hence, out of their own fear and denial, sometimes even they get a little dismissive of their children’s pain - like the doctors. It is a defense mechanism for them but it stinks for the child. I hope that this helps a little. Hang in there. I know that this is really tough stuff! I am praying for you!