Chiari or Crazy??
 

Hi everyone. Just joined NeuroTalk. I'm new so bear with me. I had posted an earlier thread about my Chiari. Here is the scoop. I am an emergency room nurse. I have had headaches since I was 16. I had a head on collision in 2001 and suffered a closed head injury. I went to see my PMD when I started having a "different" kind of headache. This headache was like none other I have ever experienced. It feels like the right side of my head is going to literally blow off, like a pressure cooker. The pain on the right side of my neck is at times almost unbearable. I have had weakness on my left side (not all the time) and my balance is off. Along with this I now have terrible right ear pain and pressure to the point that it is now causing a decrease in my hearing. Another thing I noticed is that my blood pressure is all over the place and my heart rate is now running over 100. I feel very absent minded at times with a decrease in my ability to remember things. Recently I have been hospitalized 3 times and even though it shows on my MRI (brain and neck) and CT that I have mild Chiari 1 Malfomation, the neurologist at the hospital said there was nothing wrong with me, and I need a psychiatric consult, yet he put me on seizure medicine for the new onset seizures I have been having. I am deeply saddened :Sob: as a patient and as a nurse that there are not many doctors or nurses that understand this diagnosis. :confused: So, to wrap it up, I am now unable to work, unable to drive, I'm losing my apartment, my children are moving in with my father and I am losing everything I have worked so hard for. I have an appointment in Miami coming up but I am scared to tell him what my symptoms are in fear that they won't listen to me and my symptoms. I know my Chiari is "mild", yet the symptoms say otherwise. I am heading to Miami soon to see a neurologist down there but I am really concerned that he too, will not listen to me or my list of symptoms. Does anyone have any thoughts on my story and advise on how to handle the doctor in Miami? Thanks so much

I was diagnosed with Chiari 1 in 2003 after 33 yrs of being treated like a psych patient so I COMPLETELY understand your frustration. My best advice is to find a Chiari specialist near you. You can visit any of the websites that provide info and support and they provide lists of drs and clinics with experience. I did finally get lucky and find a neurosurgeon who finally believed me but my neurologist was a woman and kept telling me that my symptoms were stress related. (after being the dr who ordered the MRI that detected the Chiari in the first place). I somehow summoned the strength that day to tell her I did not feel like she was doing an adequate job of addressing my symptoms and demanded that she work a little harder. I said "Pretend like I am your sister" and tell me what you would do then. I said the same thing to the surgeon, except I said "wife". It made a difference.

From your description of your symptoms, it sounds like your CSF flow may be blocked and causing more severe symptoms than the dr treating you is used to seeing. The seizures could be caused by that definitely. And my head also used to feel like the side and back was going to blow out. I always had an explosive type headache with coughing, sneezing, laughing really hard, and bowel movements would nearly make me faint. When the surgeon performed my decompression, he said there was blockage on my right side that was not showing on the MRI. It was caused by scar tissue from years of crowding and rubbing against my skull. No matter what drs say, unless they have personal experience with Chiari, there is no way they can know how debilitating it can be. I am here to support you and just hang in there.

Thank you Chiarichic
 

Dear Chiarichic, I really appreciate you taking the time to respond to my post. I can tell you that this has truly almost broken my spirit and I'm a pretty tough cookie!! I have been a single mom for a long time and the sole supporter of my kids and my disabled brother. It has completely changed my life and I am just beyond words that my kids have to go stay with my dad because I can barely take care of myself right now. I will tell you this, when I get through this, I am going to make it a main priority in my life to reach out to other people with this diagnosis and to try and educated the healthcare "professionals" of this diagnosis and how they should listen to thier patients and act accordingly. As a nurse, I took an oath to always care for my patients treating them with kindness, compassion, active listening, and skilled medical care within my scope of practice. Never in my life have I felt so humiliated by doctors and nurses, even after I got out of intensive care!!! So you will be hearing more from me cause I'm not taking this lying down. Take care and please write back. God Bless.:hug:

I like your attitude and I feel almost the same kind of calling.
Many times, when I am having a rough day, I think of the multitudes of people out there struggling to get adequate care and a timely diagnosis for their issues and I feel some gratitude for the "strong will" that God has blessed me with. (my family dares call me stubborn...it is such an ugly word!! LOL!!) Because without that strong will, I still would not know what was going on and would still be accepting the waste basket diagnosis and saying Thank You!!
I will keep you and your children in my prayers. Just use this time to get strong and call your docs every day until someone really hears you.

chiarichic

I understand
 

Well you have what I. Had my Chiari was 11 mm descended and since having the surgery I have good days and bad . My wife and talk often about weather or not the surgery was worth it but I think it was I still have almost all the same problems that I did before but they stopped getting worse.and some of them got slightly better. The doctors don't understand it. They did two surgeries on me and most days I'm in agony between the pain, migraines, and mental stress of having everyone tell you that it should be getting better but It doesn't. I will say Im a chef and I was able to get back to working. The memory gets better. Everything else you will learn to deal with. Just remember your kids and laugh a lot because it is going to suck. Just remember one huge thing. Before you leave the dr. Get some phenegren. If you get the surgery you will throw up. It's the worst thing that happens . Connor