My AVM is a Fistula so it’s able to be treated with just embolizations. I recently just had my final one and I’ve noticed some different things going on, I’m hoping someone out there will say they experienced the same thing. I’m going to just list them out below.
Small to large bumps on the side of my head with the AVF, with what feels like very dry skin covering them.
Very itchy on the side of my head with the AVF, may be due to the bumps.
Enlarged blood vessel from location of the AVF, right optical region, to the top of my head, this is the scariest thing right now.
Few days after the procedure painful “brain zaps” with what I call night terrors since they were so vivid and like they were actually happening causing my husband to be very worried about me when I would sleep.
Not to mention the hair loss, thankfully I have extremely thick hair.
I appreciate anything you have to tell me on this.
I have only had 1 surgery so far and have the next 1 in 3 days but I did have some similar side effects such as the bumps on the side of my head. as for the brain zaps I was complaining about those since I was 19, everyone thought I was nuts! 20 years later I was diagnosed with two AVM's a fistula and two aneurysms. Not so Nuts Now!!! I think most of your side effects are normal. I have heard of most of the side effects you speak of except for the large veins, you may want to ask your doctor about that one. RegaRdless you're not alone:-)
I have an AVM on my head, around and in L ear and salivary gland. For whatever reason, in my experience the skin overlaying AVMs does itch. Don't know why but mine always has. I would talk to your doctor about the enlarged veins to see if the AVM is re-vascularizing which is what happened to me after an embolization. That might not be your cause at all but something to check with your AVM doc about. I've had severe headaches since I was a toddler--probably due to the undiagnosed AVM. I wasn't correctly diagnosed until I was 44 years old and I had my share of doctors telling me I was nuts, too. That's what doctors tell people when they have no idea what is wrong with you : o )
I have seen the dr. he told me what I thought was a swollen vein is the vein dying off that needs to die off. And the painful lumps on my head are actually radiation burns from the X-ray, so now I have 3 new meds for my head 1 is a small bottle of shampoo that makes me very happy I have insurance, the cash price is outrageous. Then two topical so I have been pushed back 3 months on my angiogram to give my head some time to heal.
I’ve always been told it was a migraine then one day a dr. said “I want pictures of your brain” and bam, I have an AVM, to verify the AVM I have an angiogram and then I hear I have what is even more rare, my form of AVM is a fistula, I was 46 when it all stared but 47 when I was diagnosed.
I'm glad you were able to sort things out, Lynn. The term for the vein dying is thrombosis. Other members have reported just how uncomfortable that process can be, and when you are not prepared for it, it is alarming. Radiation burns are somewhat atypical and make me wonder if someone wasn't careful enough. Before your next procedure, please ask questions about the radiation and make sure the technician is carefully monitoring the exposure; hopefully, that was a one-time side effect.
Yes that is what it was called, I could not remember what he called it, and you add his accent and it makes it harder. As for the burn, I can’t help but think the fact that I have extremely thick hair may have something to do with it, my skull never sees any sun, there’s just too much hair.
It's not possible that your hair had anything to do with this, Lynn. I have a long article with a lot of graphic pictures I could send you, but this gist is this: radiation burns occur rarely during this type of procedure, and the burns are due to human medical error. Either the x-ray machine settings were incorrect or improperly monitored, or the procedure took too long and exposed you to excessive radiation, possibly due to inexperience on the part of the doctor. This is not an acceptable side effect and not one that should be repeated. Hair loss also indicates radiation exposure, and members regularly report hair loss, but the burns indicate overexposure.
I had a fistula on my left side behind my ear and it did itch and still itches I have bumps on my head since I had the fistula and my angiogram and embolism lasted 7 hours and I had lots of pain worse than before and I major hair loss and its been a year since since the procedure. My hair started to grow back after a couple of months My hair guy said its normally anytime you go through some kind of trauma.
I am using a shampoo with tree tea oil that helps with the bumps and itching but I still itch some days are worse. I also get 30 botox shots in my head every three months for the pain and it is getting better.