After extensive research, we found many connections with skull base size of eds patients (crowded mouth, high palate, underdeveloped maxilla, flat cheeks), and stenosed veins. My daughter had her wisdom teeth out and could feel her neck for the first time in a year. I also spoke to dr. amir from UK who is doing palate expansion using orthotropic appliances which is the opposite of orthodontics. He believes that expanding the palate brings it down and the maxilla forward making more room inside and prevents the need for stents . My daughter used to have complete headache resolution w/ atlas adjustment and I know researchers have made connections w/ this and stenosed jugulars and ms. After much heartache, we decided to have my daughter checked by an interventional radiologist and agreed on stenting as everything we read pointed to the likelihood of restenosis with venoplasty. She was in a wheelchair for 15 months, bedridden for the last 5 yrs , could barely see, lift her arms and numb from the waist down. After getting just one side stented, it is ALL gone. She is walking around as if nothing was ever wrong. In addition, she had completely normal icp (15) which dropped to a 2 during stenting. This number for icp is “normal” for a child/toddler. Perhaps edsers have a very low icp as their normal due to their crowded skull base. In addition, I spoke to another edser who had a stent done in their transverse sinus and the same exact thing happened w/ her icp. We had been to a number of drs who insisted that her only option was a shunt! We have tried all the traditional and nontraditional treatments out there for edsers, migrainers, etc. This was a very personal decision of ours and risky and I don’t want to influence anyone else to do the same thing w/ less than optimal results. I know stents aren’t perfect and I believe someday options will be more perfected. However, we didn’t feel that she had the “time” to wait. We are now in the process of having her azygos checked as her pots and headache remains although the headache went from a 9/10 to a 4/10. We also want to do palate expansion after she is done w/ blood thinners to prevent the risk of stent restenosis as well as give her skull and other vessels room for long term health. I want to add that in doing research, I found so many people w/ multiple neurological diseases and issues all seemed to have these narrowed veins, all with amazing results w/ stenting, not venoplasty. I cannot believe this is info is not more widely available and accepted by the general medical establishment. Again, I not encouraging everyone out there to go get a stent, but I believe there is so much info out there and HOPE too. It is easier to connect the dots when you have been through so much and have every symptom in the book.
Glad to be a pretty determined mom. I knew it would pay off.