Hi! New here. I’m hoping for anyone who has experience with Cognetti and vascular type compression to let me know their experience. I have severe bilateral compressions from styloid and c1. Ive heard he sometimes works with another surgeon for c1 shave. Can anyone speak on any of this? I know some will tell me to go for 2nd and 3rd opinion but my options are limited if you read below.
I have a long history as many of us do. Large leaking sacral tarlov cysts with laminectomy, nerve wrapping, and muscle flap surgery. Never recovered from rebound high pressure. It has led me here. I’ve already been out of work for a year and survived with a gofundme my work put together for me.
Im scheduled with Cognetti for February. It feels like such a long time and I’m stressed about how I’ll make it work. I dont have the funds or resources to travel and especially to go out of my network (I’m local to philly).
I’m sorry that you’ve been through so much already and are still not doing well…Dr Cognetti has started working with Dr Heller to do the C1 shaves, here’s a link to a discussion by @Carrie68 about the surgery:
If you click on her name you should be able to message her directly… I hope that Dr Cognetti can help you, February is a long way away (I’m in the UK so that sort of wait is standard for us!) , but at least he’s not too far for you. Some members have been able to get to see doctors earlier by asking to go on a cancellation list if you can do short notice, if you’ve not already tried that? Hugs to you
Thank you! Yes February is a long ways away. Im currently on diamox but I’ve heard some of the specialists trial people on blood thinners and have better results and less side effects so Im going to ask my neuro radiologist next week. Its a hard sell but maybe he’ll let me. As for the waitlist, you bet I’m on it! Thanks for you help
The blood thinners most often reported on here as being Rxed & helpful w/ vascular symptoms are Brillinta, Xarelto, & Plavix. I hope you’re able to get a prescription. It can take 2-3 weeks for symptoms to calm down once a blood thinner is started.
@Twistyburrows - That would be a good question for your prescribing doctor. Different categories of medications require different weaning techniques in order to reduce side effects. I’m sorry I’m not sure about diamox.
