Oh and they have found a connection with PTC and blood clotting disorders, so stenting doesn't work well with us because they just get clogged with blood clots.

Tammy do you mind if I ask which University you went to? My LP shunt does not seem to be working. My doctors also talked whether to stent or shunt first. The ol' chicken or the egg ordeal. So I had a MRV right after a LP and drainage, and the images showed that my veins opened more after the pressure was released, so they went with the shunt. However, I feel like I still need the stent. My head aches so badly at the back right side of my head, right where I have the stenosis and drainage problem. My next appointment is the first week of December. I am going to bring the issue back up at my appointment. Thank you for the information.
Amy

I went to the University of Utah hospital, and Dr. Richard Schmidt is the neurosurgeon who placed my shunt. I live in Idaho, so traveling out of state was hard. But it was DEFINITELY worth it!!!

Well I'm in Michigan, but I do know of someone who got that kind of shunt in Detroit at Henry Ford 2 years ago and is fine. And I know of another who got one in Chicago.
Thanks Tammy
Amy

Yes, There is a connection between PTC and blood clotting. Several people including myself have had problems with blood clotting in their brain. I have had blood clots in each of my transverse sinuses (very rare) BUT I still have stents in each transverse sinus. To keep me from getting blood clots I can take either a blood thinner (because I have an inherited blood clotting disorder) OR take baby asprin to help alleviate this problem and keep blood clots from sticking to the stents. If you get a stent you have to at least take baby asprin for the rest of your life to keep clots from sticking to the walls of the stents. However, like I said the stenting got rid of my narrowing in my veins caused by the blood clots, but I still went on to get a shunt as well. But nothing can really prevent you from getting another clot or the stents narrowing and my left one is narrowed 20% already in just two years so I'm not totally sold on stenting yet but guess I am a guniea pig or something because I tried it. Not a great feeling...
Everyones situation is different. I've seen so many variables in this group over the years. You cannot necessarily go by what works for one and what doesn't for another. I have two stents, and a VP shunt now and still have headaches daily but hopefully my intracranial pressures are a bit lower...
Hugs,
Mandy :)

I am not going by just what has worked for me. I have done a lot of research on shunts and PTC with the help of my NS and others around the country. It is fact that LP shunts over drain, because they are at the very bottom of the spinal column, so gravity causes them to over drain. And it is also fact that those with normal sized ventricles shouldn't get ventricular shunts, because the ventricles will collapse on the tubing and clog the shunt tubing. This is based on years of research and years of trials with PTC patients. There are, however, a few PTC patients who have larger than normal ventricles who have great success with ventricular shunts. But that is not the majority of PTC patients. I am trying to get the word out there that we have a better solution, so that people won't have to go through all that I, and others, have gone through. There can be severe complications with numerous replacements of ventricular shunts, so people are just taking their chances with this type of shunt. Just trying to help save people from the hell that is associated with lumbar and ventricular shunting! That's all.