My 18 year old daughter has "low lying tonsils" but a flow study was good. Now the neurologist is suggesting her spinal fluid pressure may be low and she may have a leak. ie Intracranial Hypotension
Does anyone have any experience with this? Apparently it can cause the tonsils to drop and mimic Chiari.
Any insight would be very appreciated. We will not be able to get the pressure tested for several weeks, so right now are waiting and worrying.
Her measurement was 6mm. The last MRI showed no disruption in flow though so the NL feels the Chiari is not causing the problems but that perhaps her spinal fluid pressure is too low. She has a constant headache and back and neck pain/weakness that has been worsening for several months. We will be scheduled with a Dr. Gray at Duke University to do a spinal tap and possible patch of any discovered leaks in the next couple of months. In theory, it sounds like it all makes sense, but just wishing to hear someone else has experienced this.
Hi. Wow… I am going thru similar with my 13yo son. He had his 2nd decompression surgery in June… Still has headaches after 3 months postop. MRI showed low lying tonsils & possible intracranial hypotension… How is your daughter doing? We are waiting on more testing.