Well initially I got out of the gate very well with Round 1. Then, the day after the procedure I contracted COVID of all times to get it. That was just a bowl full of fun. If that wasn’t enough one of the (2) IV sites I had in my right elbow clotted & turned into thrombophlebitis. On top of that when diagnosing it in the ER they found I had pulmonary edema in my right lung. So, now on Eliquis & seeing hematologist. I was rolling along with that treatment and for the icing on the cake the thrombophlebitis site then turned into cellulitis. The cellulitis and soreness in right arm has since resolved with antibiotics and the blood thinner.
Aside from that I am still experiencing right side scalp soreness/tenderness where the gluing took place and procedure was back on 9/12. Anyone else have that post embolization for a long period of time? I never lost any hair & don’t think it is radiation related as there is no scalp redness. Doc says its either that or blood flow issue. Need to ask more ?s as getting a touch concerned it’s not going away. Typically, I heal very quickly. And know my body very well and something says it’s just not right.
My eyeglass RX doubled since February due to the Papilledema. Hoping after what I was told is min. of 6 procedures that will resolve & I can also get off the Diamox. Makes all carbonated beverages taste like metal. As my luck would have it if I was nearsighted & not farsighted it would have cancelled it out & I would be eyeglass free. Of course I am farsighted…lol.
So, anyway on Halloween Monday I go in 1st thing for round 2. Hoping it is far less dramatic than the fallout from Round 1. Take care all. Steve A.
Tough stuff to read wish you the best & hope you do well
This health stuff, geez - it sure is something
I had external veins that appeared to be involved in my DAVF. From what I can remember and checking back on my story I’d say the external soreness of those was for up to 3 weeks, 4 weeks max and I believe they got filled with glue as well. So sounds important to ask about. What I’m wondering is whether it is due to you having your treatment in 6 stages: having closed off part of your AVM, the altered flow is starting to disrupt other veins: i.e. you’re getting the discomfort from some external veins being back-inflated by the new flows, a bit like I was prior to surgery. Surely the plan is to resolve this but during the various stages, it seems reasonable to get different effects as parts are closed down.
I think it is also possible that the doc’s plan changes as they observe what you’re going through each time. Important to tell them what you can feel.
If it’s any consolation, my luck doesn’t run any better than yours! I was also given a query diagnosis of macular degeneration in 2016. It turned out not to be but gosh 2016 was a fun year.
@ukengr93 hello Steve wow you have been through it and we must be related!
How long was your round 1?
My round 1 was a little over 7 hrs which was angiogram and embolism with glue and onyx .
I recall my head was sore for almost two weeks.
I am also allergic to the dye and was pretty ill for three weeks.
I also suffered from bad migraines before all this new brain stuff started ( CVST stroke and DAVF)
They got worse afterwards but started to get Botox shots every three months which doesn’t help how often I get them but helps in the severity of them.
Also a newer drug that melts under your as a preventative ( but for me also works when I have a migraine and doesn’t tear up my tummy) is Nurtec.
Best wishes for round 2.
Did they do any testing to see if you a genetic clotting issue?
Thanks all for the well wishes. Angela, my 1st round was 6 hrs. It is amazing what the brain does as the 1st thing I did when I ‘came to’ was look at the clock on theh wall in the recovery room & did the math in my head. I suppose in hindsight that was a good thing bc I was sharp as a tack. I have been a migraine sufferer since my 20s. I take Emgality as a preventative every 30 day injection. What a game changer!! Something you may want to look into. Since my right dural sinus is occluded and likely caused the fistula…yes I am seeing a hematologist bc if I clot again in my good dural sinus it will be lights out. We shall see. A lot of hands in the cookie jar right now. I’ll send update (I hope) after round 2. Thanks for all the well wishes & thoughts. Happy Halloween!!
Hi Steve, You’ve certainly been through the wringer. I hope all of your procedures are successful and the side effects of the drugs aren’t too bad.
Keep a stiff upper lip as they used to say in England.
Best wishes, Greg