June 30, 2015 at 8:37 pm #863prettydeterminedParticipant
My daughter has two very compressed internal jugular veins at the transverse area. Her symptoms (leg weakness, and headache) get better with traction. She does not have basilar invagination or cranial settling! Her headache used to completely disappear upon c1 adjustment. After researching tons of info, I am convinced that due to the chiari, EDS, her small head and crowded palate and c1 being slightly off, it has resulted in venous narrowing or compression. A chiro, dr. michael flanagan did a lot of research on skull shape, etc. and has a lot of interesting theories. Anyhow, we are looking at a stent but I am worried about restenosis. Every research paper I’ve read shows that angioplasty has a high rate of restenosis for people with neurological diseases. There is one interesting one regarding chronic fatigue and jugular compression where every patient had great results only to narrow again in a short time. I’ve also read incidences where face pulling (where your sphenoid/maxilla is pulled forward) making more room in your skull base in this delicate area shows the same astounding results as vascular procedures. I can’t help but tie it all into case studies of patients who have had C1 laminectomies/modifications that are successful in relieving the dreaded headache. Anyone have a stent and did it restenose or has anyone heard of face pulling? Thoughts and suggestions are welcome!
By the way, she has confirmed episodes of edema by an opthalmologist and has tried diamox but the side effects were too hard for her. We DO NOT want a shunt but she is getting worse. Bedridden and wheelchair bound this past year.July 1, 2015 at 6:17 pm #5568Dr. DianaKeymaster
I’m so sorry for your predicament. It is not entirely clear to me what exactly is happening, but I had a couple of thoughts/comments. First, when you say her IJV’s are compressed, what is compressing them? Is it really a compression, or is it a blockage (usually a clot) or have the IJV’s collapsed (they can collapse from high ICP itself)? If they are compressed by *something* (tumor, bone?), the something may need to be removed. Does that make sense? I’m not sure where you live, but here in the US, I don’t think anyone is stenting these veins — the FDA warns of the dangers, and treatment for clots needs to be treated completely differently, of course, if they are blocked for that reason. Many times these veins open right back up when the ICP is reduced — they appearance of collapsed veins is sort of a red herring — not the cause of the problems. When you say she has evidence of edema — do you mean papilledema? If so, medical treatment is always preferred, if there are no tumors, etc causing the problems. Options include Lasix, steroids, weight loss (if part of the problem) and perhaps changing her Diamox dosage, timing, CO2 levels, etc. Some doctors will also try Octreotide. Has she always had these problems or are they due to something else? If due to something else and if the cause can be addressed properly, high ICP is usually temporary (also encouraging medication as opposed to surgery). This takes a careful evaluation, clearly, but CAN be done. 😉August 9, 2015 at 10:15 pm #5596prettydeterminedParticipant
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.September 15, 2015 at 4:32 pm #5658tessal8Participant
I started strictly monitoring my salt intake through an app (you’d be surprised how much salt is in canned mushrooms, for example).
I cut back to nearly NONE and it helped a lot. My POTS ramped up, but I had more treatment options for POTS than for raised ICP and small cerebral veins. I’ve heard that some people tolerate lasix better than diamox, as was mentioned above.
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