Hoping for some PED survivors to see this - I’m lost on the new site! I keep having headaches, nothing new there, but I feel like they’ve evolved into something new (and a little scary). I’ve had headaches since my first PED/coiling Mar 2012. Throbbing in the annie location, very painful, seem to be in step with blood pressure. Then I’d have like a hangover the next day and be very brain fogged. Now the pain is usually less of the issue, though I sense it’s presence (that is so creepy lol), and I just feel really groggy, a little woozy or dizzy, and truly like there is an impairment of my left side. I know that last part is the scary part. It doesn’t surprise me though because I had a test balloon occlusion angiogram in the beginning of my journey to see if just clipping the artery of the annie would suffice - my left side tingled and went numb while the test balloon blocked that artery so the neuro stopped the test and concluded that I could not live without that artery so I’d need the PED instead (probably due to not having a right artery to take over the blood flow - my left vertebral, with the annie, is all there is going up my neck). Most of the time I’d say, I feel fine. But then I have these clusters of headaches and these new symptoms and I don’t know what to think. Anyone else have similar symptoms? I know I’ll get a lot of “go get checked”, but my neuro is on the other side of the state and it’s over a mountain pass and it’s an overnight stay - my life just doesn’t warrant that without real serious need. It’s also an insurance nightmare (not an exaggeration, truly) to get over there. Locally, I can get an MRI if need be, but I won’t lie, I don’t know if I can do that mentally. All things considered, anyone else have these types of issues? Thanks everyone, and I miss our old site and the PED group…
Sarah, hang in there someone with a PED will answer. I realize WA can have a lot of rural areas with little specialists but is there a Neurologist in your area?
And your right…go get it checked out. The inconvenience of travel and insurance companies far beats any problem. You might get your Congressperson or Senator to intercede with the insurance company. Call their office and find out which aide deals with those issues.
Good luck!
Believe me, I went through all the channels available back when my life saving brain surgery was denied by my insurance, and only a lawsuit brought any resolution. I am in a rural area, and there are neurologists around but my mom has tried several for her migraines and isn’t impressed with what’s to offer - and I just can’t handle meds, my body doesn’t like them, and that’s mostly what neurologists are up to. I’m well aware of the inconvenience of travel being necessary at times but I just can’t decide if this time it warrants desperate measures. And I really am gun-shy about going to any doctors/hospitals anymore. Mostly I was hoping someone would respond with similar issues and tell me it’s just more of the same - weird stuff we survivors deal with after treatment. Thank you for your concern, and for responding! I am feeling just a tad bit better than this morning, so that’s nice.
Just an update - I had an MRA and all was well. It was my normal checkup I forgot I needed to have. He doesn’t want me have another for five years. I’m currently in my recliner, have been all day. Very slow, head feels heavy, and the headache is setting in this evening. I was very active yesterday and that can certainly be a factor. Disappointed in this site still - can’t find my old support “team”.
Hi Sarah, I miss the PED support group also from the former site – – I remember Linda used to be the moderator of that one. There are still people on here with PED’s-- we’re just scattered all about. I will be a two year survivor after having my PED placed in July 2015. Fortunately, I have never suffered with headaches as you are describing and so many other PED survivors. I fully prepared myself for those after my surgery. I even asked my doctor for a prescription for forecet (sp?) in case. . I have had several other issues however. I just went my first MRA following the six-month angiogram up at NYU last month and was told I don’t have to do it again for another two years-- and then eventually it gets less and less till I get up to 10 years, I believe. I know a lot of former members said that they had an angiogram done at the five-year mark and then they “graduate” , but my doctor said no–that he wouldn’t do anything invasive like that if everything looks good on the MRA. Anyhow, I’m on here from time to time. Hopefully you’ll be able to track down some of the other members from the former site. Take care, Patty