This started 2 years ago. But I did have horrible neck pain for the last 6 years and my neck is straight and twisted. I have had mild scoliosis since the 7 th grade ( I am now 35). But it has gotten worse since the last 6 years or so. I don’t know if bc that is when I started going to chiro and I know they are not good for us…didn’t know I had this till a year ago. So I understand where mast cell makes sense, but I don’t have any allergies. I definitely do get the pressure thing. And I do have that cyst blocking fluid too. It’s weird when my neck hurts the rest of my body seems better then my middle back will hurt then my low back will hurt and my legs will have more symptoms. It feels like my spinal fluid is stuck or really pressured at the spot that it hurts…I don’t know if that makes sense. I have researched ccsvi since Oct. 2009 and had an ultrasound done and it only showed valve problems. I didn’t do anything about it bc I have heard all different about fixing valves. I even did the first or maybe second walk and roll ccsvi walk with dr. Dake in Tampa. I totally believe in it. And can’t wait till they get more info.
I sent you an email about a week ago dr. Diane, but I know you r busy so you might not have read it yet. It explains my whole Story better ;). Thanks for all u do!!!!!!
Oh, and Momof3, you don’t need to be an “allergy person” to have a mast cell disorder. The only allergy I have is to CATS, but I have horrendous mast cell disease. What you’re describing DOES sound typical for many of us with increased intracranial pressure (we don’t drain as well lying down). I believe that mast cell disorders are a likely cause of our CCSVI. I wouldn’t recommend angioplasty until you are certain that your mast cells are under control, or you may restenose (in my HUMBLE opinion, as a patient and MOM), as my son and I did. Angioplasty just stirred up his mast cells, poor guy…
Valve problems are huge with us. Elevating the head of your bed can help a bit.
Hang in!
🙂 Diana