Does anyone have EDS or Chiari Malformation?

[ktdommer]

I haven't been here for awhile as life got crazy with husband's cancer- he is doing fine, and son's Chiari discovery along with my EDS diagnosis and now his.

 

Sort of ironic that I battled Lyme for 5 years and got better, only to learn reasons for my flexibility and stretchy skin along with popping joints that go back almost 40 years. Recent easy ankle fracture and slow healing.

 

My son is now 21 and has been living back at home as a necessessity. He didn't qualify for disability and at the time we didn't know about his Chiari or EDS.

 

Yesterday I was watching an amazing EDS specialist on a YouTube video and on his slides popped up PANDAS. He says he has several patients with EDS and PANDAS.

 

So on the search to get son well, we explored autoimmune encephalitis at the Cleveland Clinic. Doc ordered blood work which ruled that out. The ordered MRI with contrast showed. Chiari Malformation which lead to neurosurgeon and a flow study. We then went to CHiari specialist at the CC. Advice is to come back in a year. I'm looking into a third opinion and getting the Cadillac of testing done where he is sitting up for flow study of CSF. Sort of dumb to do this laying down which is not how the Chiari sits when upright.

 

My son is not taking a single med. no therapy or anything. He is working part time and seems happy if social although he will verbalized to me otherwise. We see Lyme doc in April. I'm maintaining on herbs.

 

My next research will be mast cell disorder as VERY often that is found in EDS with POTS.

 

I hope everyone is doing well on the journey with chronic illness. I had no idea that 12 years later I would still be fight for answers and fighting to find educated docs on another rare condition!