Hi everyone. I am so glad I found this forum as I have been feeling so alone over the last 6 months.
I was diagnosed with Chiari Malformation after complaining about pressure in my head to my therapist and having an MRI done. I am 21 years old and I can first remember this pressure in my head coming on when I was 18, but it was not very intense. In the last year, it has become much more pronounced and that is what led to me getting a MRI. Other symptoms I started to experience about a year ago included extreme fatigue, hand shaking, trouble swallowing and numb extremities. I saw a doctor at Penn Medicine and he said that although he was not very experienced with the surgery he thought he could perform it and relieve some of my symptoms. Surgery definitely scared me but I was so excited at the prospect of some symptom relief that I was willing to do it.
A few weeks later Penn got in contact with me and said that my malformation was not as pronounced as they thought and that surgery probably would not help. This truly left me feeling hopeless and scared.
Here was Penn’s report on my MRI:
“No acute intracranial hemorrhage extra-axial fluid collection, or acute infarct. No mass effect.
Ventricles are normal in size, shape, position. Cerebral tonsils are mildly low-lying bilaterally (right greater than left) with crowding of the foramen magnum, but are morphologically normal appearance and do not meet criteria for Chiari malformation.
There is no syrinx.
Visualized paranasal sinuses are essentially clear bilaterally, with a solitary retention cyst at the floor the right maxillary sinus. Right deviation nasal septum with small right nasal spur. Orbits are unremarkable. Mastoid air cells are clear”
This leads to where I am now. My symptoms have gotten worse. Specifically, the pressure in my head is more unbearable than ever and new symptoms have emerged. Blurred vision as well as memory problems have presented themselves. It kinda feels like I'm in a fog and cant focus. Not fun at all. Moreover, I now have a upper neck/lower skull pain that has not gone away in a few days. I have been under a lot of stress at school and I read that can lead to a flare of symptoms. I really hope this is the case and the symptoms will get better if my stress goes down.
Is it possible to find relief if my X rays do not show a very pronounced malformation? Is it possible that I have a shorter herniation, but also wide, so more severe symptoms because my CSF flow is obstructed? Should I look into a Chiari Specialist and a CINE MRI?
I just want this to get better instead of worse. I am only 21 and don’t think I can live the rest of my life with these symptoms, god-forbid if they continue to get worse.
Any advise would be greatly appreciated.