Hi friends – Some background: I am 22, I have Chiari Malformation 1, 19 mm herniation. I had decompression surgery in December of 2015, so I’m almost 3 years post-op, but since surgery my symptoms have come back on and off. Right now, my main issues are the following:
- I have excruciating Valsalva Headaches (or cough headaches) caused by “exertion” (I say that in quotes because exertion is relative; it’s not like I’m going for a run or anything extreme) - coughing, singing, shouting, laughing, going to the bathroom, bending down, standing up from lying down, lifting something heavy, etc. - they are debilitating, feel like ice picks in my temples and the top of my neck/base of my head, and make me extremely nauseous
- I also have numbness, pins and needles, weakness, and pain in my hands that spreads up into my elbows
- I also have TMJ (unofficially, not diagnosed), nystagmus, an extremely sensitive scar from surgery (I’m 4’11" so hugging people and having them wrap their heads around my neck is extremely painful), waves of heat wash over my body, fatigue/feeling exhausted and overwhelmed after simple tasks, and back pain
Here is my question to all of you: If you experience any of these symptoms, but MOST IMPORTANTLY the Valsalva Headaches, have you or your doctors found any treatments to prevent them successfully? My decompression surgery did not remove any of my skull, so if you had surgery where they put in a patch or even a shunt to release some CSF, please let me know. In my research it seems like there hasn’t been much treatment, so I want to see if anyone has found anything that works for them individually.
Thanks for reading and thanks in advance for your help! Sending healing & positive vibes to everyone!