Following up on my previous post... I am curious about embolization experiences out there. I am scheduled for another angio and pre-surgery embolization on Jan. 8. This will be my second angio. Is there anything I should know about the embolization procedure they might not have told me? I was surprised it will be under a general anesthetic this time. Any weird side effects or sensations. Temporary or permanent issues. My craniotomy to remove the avm is scheduled two days later on the 11th of Jan. Thanks in advance.
I've had 3 embolizations done, and they were all very different, ranging from no big deal, being on my feet and out the door headed home with only a slight soreness in one thigh to complications during one that went wrong and ended up being a pretty awful experience (but that was 20 years ago when they were using a very different material for the embolizations which they don't use anymore). My latest one I was also completely out for rather than being awake like I was for the first two.
I had no odd side effects other than the lingering on again off again headaches from one embolization and side effects from the medications I was one right after the most recent one. The effects vary widely, all depending on where the blood vessels are that they're working with. I ended up with a really sore scalp after one and it turned out a nerve close to the blood vessel they were occluding had gotten inflamed by the procedure. The embolization itself was very low risk because the blood vessel they were working on was very close to the scalp rather than being deeper in the brain. It felt like someone had braided my hair WAY too tight and then left the braid in. Once they started me on gabapentin the scalp pain went away.
They're usually very good about going over procedures and since they know the location of your blood vessels and nidus, they'll know much more about the details. Embolizations and angios are pretty minor compared to the crainiotomy.
Thank you Shirasaya. That is helpful to me. My whole scheme is up in the air now thanks to my sisters proving they can not be relied upon or even be the least bit empathetic. I will see if I can get it done with support from the social workers and other support otherwise I'd rather call it all off and not have my sisters around me. I'd take the 2% to 4% chance of a bleed than have them back in my life. Never should have done that. Long unnecessary story. Thanks for your input.
I also have had a different experience every time 4 embolizations in the past 5 years one was pre surgery. Just a little history cause I know mine is more rare than others which makes the situations and surgeries a little different but each time I was under general anesthesia. My avm is in the muscles in my hip. The first 2 embolizations were no big deal just a little soreness at the site of entry through the femoral in my groin third was a little more complicated and left me with loss of sensation in the top and outter side of my thigh but it started to resolve due to nerve regeneration with therapy over about 6 months. the most recent angio I had there were more complications due to more tissue being involved in the avm and left me with nerve damage and loss of sensation the top and outter portion of my whole right leg which again has started to resolve a little over time it’s not back to normal nor do I expect it to be since my avm is so close to all the nerves in my spine and thigh but it’s something I’ve learned to live with. I also had a lot of cramping and soreness after this surgery I was put on 15 mg of OxyContin every 4 hours for a month to help the pain. I’m now about a year out from the last surgery and my avm is beginning to shrink it’s smaller than it’s ever been so for me the benefit out weighed the risk. That’s all we can do is ask questions and have faith that the best doctors are doing what’s right for us. Good luck
Have you been under General Anesthesia before? Is that what you are concerned about? Anesthesia can effect people differently. I've heard patient's say that their memory seems a "little-off," that they don't remember new things as quickly as they did before and they will attribute it to the anesthesia. However, there really isn't a precedence for that.
Regarding the Embolization. Headaches initially can be a bit if a bother but they go away after awhile. My headaches lasted for about 3 mos.They were frustrating but nothing that required continuous use of a daily dose of pain medications. If Onyx glue is being used you may smell like Garlic when you wake up. I'm Serious, it's quite funny.
No sinus medications, any medications that have blood thinning effects. For me I can't lift anything that weighs more than 15 - 20 lbs. for the rest of my life. There is always the concern that I'll pop the glue and hemorrhage but that is an extremely small chance.
There can be all kinds of little nuances the that will shop up intermittently that will be difficult for the NeuroRadiologist to predict really.
The craniotomy is a different experience though. Those side-effects are specialized upon the area/procedure you are having.
It's unfortunate to read that about your sister's. Family and friends are important during a time like this.
I wish you all the best Amani. One step at a time and you'll make it to the finish line.
Hello: I go into surgery on Jan. 11th too! I will be thinking of you. I understand your fears but after reading everyone’s story, it gives us hope.
Hi Amani, Like everyone says, each case is different. In my case, the AVM was in the right frontal lobe of my brain. It was too large for any therapy. My only option was embolization and surgery. I had two embolization procedures. In the first one I got sick from the anesthesia. After recovering from that, all was well. The second one was a little over 24 hours before my craniotomy. Had no problems with that one. The surgery was long, and when they woke me afterwards I was wide awake the entire night after. I wish I'd had someone there to talk to because I got dizzy if I tried to watch TV. So I just left it on for the company. I too had family problems. One person I wished I'd never told about anything that was going on because she wanted to take over everything and tell me what to do, even if it meant defying the doctor. I was blessed with a wonderful doctor that took very good care of me during my AVM removal. You really will need someone to help you afterwards at home. You will be a prince for a good time while you recover. I'd always been pretty independent and the recovery at home was the hardest thing for me. I always wanted to do things I shouldn't do. But in the end, I behaved and recovered nicely. My surgery was in March of 2013. I was never superstitious about the number 13 until that year. At the end of the year I was diagnosed with breast cancer and had another major surgery. Since then it has just been an issue of getting my strength back. Being in my early 60s, I likely will never have the stamina I had before 2013, but I am doing very well. My AVM was so large that I'd likely not be here today if I'd not had it taken out.
Good luck with your surgery. Have you considered home health care until you recover after surgery? I wish I'd thought of that back when I had mine. You will be in my thoughts and prayers. Hang in there. Just think, this time next year it will be over, you will be recovered, and back to normal.
Hi I had a crainiotomy in 2010 for a bleeding AVM in my left temporal lobe. The surgery went great. However, I now have intractable seizures and severe memory problems. I take 5 AEDs plus a couple for depression. In no way am I saying that my life is horrendous but I am on disability. I may not be here at all for my children if I didn’t have the crainiotomy. I do have severe headaches as well. You could be great after the surgery it is a case by case thing. I hope you are, it may be better than the alternative. Much luck and love.
Thanks to everyone for sharing your experiences with me. Yes my family will not be in the picture. I was foolish enough to let some of them back in and today they will be removed from all my consent forms so they will not have access to me. I am looking into alternate after care now. CA has something called IHSS (In home support services) if I am elgible. My craniotomy is 48 hours after the embolization and I have epilepsy now. The avm is where my seizures start (right frontal lobe)so perhaps I won't have to take dilantin the rest of my life. That is one hope of mine. For Athena... couldn't they give you something to help you sleep or knock you out? It is so important for your brain to rest after trauma. I'm surprised to hear they let that happen.
I had dural, face, and scalp AVF's so my experience might be different. I was embolized with Onyx and it went better than I expected. But everyone and every situation is different. For the angiogram part (I believe) I was sedated, not anesthesia (I was OUT within a min or so after they moved me from the gurney to the table) but when they decided to embolize is when I believe they switched me over to anesthesia and intubated/catheterized bladder (I was out, didn't know/feel a thing). My 3 AVF's took just under 5 hours. When I woke up I was already extubated and had a bit of a dry throat (mild). The anesthesiologist removing my bladder catheter is what started to wake me from the anesthesia lol. The first thing I felt after embolization was head and face swelling/hardness on the side of the AVFs. I was doped up so I didn't feel much pain. Very very relaxed, tired, relieved. If you have intolerable pain or nausea, speak up. They are there to make you as comfortable as possible during this time. My head, kind of strange waking up to, it felt swollen enough (but not painful) that I honestly thought they had done a surgical resection, that is until I touched it with my hand and then realized it was just swollen. The best thing I could relate it to, is that it feels like theres smooth flat stones, or little bits of thin flat concrete, thats just been implanted under the skin. Just an odd sensation. The left side of my face (avfs were left side of head) was also 100% numb. For you if you have a brain AVM I'm sure it will feel different than mine. Onyx (if thats what they use on you) gives off a very unique, garlic/plastic stinky smell from your mouth and lungs for the first 1-3 days post embo. Whenever (if) you may cough or sneeze the first few days after, you'll smell & taste it a bit more. I tasted it constantly but it didn't bother me. The staff who walked by my room joked, "whoa, I smell Onyx!" because the smell comes out as you exhale. It goes away quickly. I didn't need pain medicine for 8 hours after waking from anesthesia but I did once my back started hurting from laying there for so long. I couldn't fall asleep because back was aching laying there all those hours. I forgot what it was, but it was WAY better than the initial Tylenol, tylenol didn't cut it. I was not allowed me to stand until 8am the following day. Unless they decide to keep your bladder catheterized, the bed pan is going to be your best friend! All that flushing of the contrast/IV drip, I had to pee 3x overnight. If you don't pee within a certain number of hours after having bladder cath removed, they will recath you. Try your best to pee! The side of my head/face was numb for about 24 hours post embo, and swollen for I think just about 3 days. I stayed 1 night in neuro ICU and went home the next afternoon. I took only 1 or half a tylenol per day the few days after. I was too tired to shower for about 3 days and I was winded easily. Head, face and scalp was sensitive to touch for days after, just shampoo gently. Walking from my bedroom to kitchen, I had to sit down by the time I made it to kitchen. I stayed with my parents those days after. They took care of me and my dogs. (I was too tired to even feed the dogs first two days but managed to microwave some food for me). Took me about 5 days before I wasn't exhausted but also keep in mind I have Chronic Fatigue Syndrome and I'm physically sensitive to pain and changes. I do have some random pings and dull pains head pains on random spots even on non-AVF side, worse with exertion and caffeine, but not terrible, just odd. It's been 11 weeks post embo and I'm very happy and trying to manage my CFS. Best of luck to you! Please keep us updated on how it goes.
I too get this scalp pain sometimes. It's like someone is pulling my hair in a 1 inch x 1 inch spot. I just rub it gently as best as I can. Sometimes I also feel a vibrating sensation in that same area, as if I'm standing next to a helicopter engine, not hearing the noise, but feeling the vibration on that area of the scalp. Strange way to describe it lol
I have Onyx also, but was not told to not lift. Doc told me to go back to living my life normally, just the first month I was not allowed to lift or push more than a few pounds. I wonder whats different that he said no lifting for you
I was so addled after surgery that I didn't think to ask for something to make me sleep. I just suffered through no sleep that night. I think that is why it is good to have an advocate to talk for you, if you can. Thanks for the thought.
I've not had to take anything at all since recovery. The surgeon did scans periodically to see that everything was as it should be in my skull. And it has been fine. I have 4 titanium plates from the surgery and had 72 staples after surgery. I was so surprised how painless it was when they took the staples out. I was worried about that until the day they were removed. I have you in my prayers, just said one for you a few minutes ago. I pray you recover as well as I have. I was blessed that the doctor found my AVM before it caused any major problems. Hang in there, the waiting for the day of surgery is one of the hard parts. Just try to stay busy, so you don't think too much. Please let me hear from you as soon as you are able. You will be in my thoughts and prayers.
Thank you for all the nice thoughts Athena. I will not have anyone there with me but I have no trouble (usually) asking for pain meds when I need them. I don't know what the incision/scar will look like or how big it will be. I have long hair so if they shave it off, I just want them to donate it. I just found out today that once released from the hospital (5 days), I will be going for 2 weeks respite care so I don't have to worry about food or much else. At least that is my understanding right now. I don't know when I might have a computer post op. I'll have to work that out somehow.
I've heard about the garlic smell Emmy. I don't mind garlic but it does not sound that pleasant. I will be under a general for the embolization and catheritization. I think they will just leave it in until sometime after the surgery on the 11th. I hope to not feel anything but my smooth skull since the avm should be completely gone when I wake up the second time. I think I'm glad to have the two weeks respite care so I can focus on healing instead of taking care of myself. Thanks for your well wishes. They all mean a lot to me since I will not have any family of origin around me(and that's a good thing).
I understand it may be a while before you can get back on the computer after surgery. You won't even feel like dealing with a computer for a while. I'd just like to hear that you got through it all in good shape, when you get back to a normal routine. No worries. Just hang in there. You will be in my thoughts and prayers, as many others I'm sure.
Amani
Where are you having surgery?
my embolism in 2012 was with glue and onyx
I also had a stroke but believe it was due to being out so long and I had a major stroke less than a year from my embolism.
I had terrible electric pain in my temple and was very nausea.
ASk for a prescript of zofran it helps with the nausea and helps you sleep.
I spent the night in the hospital and could start speaking again the next day. I also am allergic to the iodine so did not feel great for about a month.
I had lots of pain in my occipital lobe also heard some popping drs said it was the glue moving.
I had a second angiogram in May of 2015 but lucked out and mine had some how sealed itself.
But still felt terrible for about 2 weeks
If you are in the bay area I would be happy to come to the hospital to support you
Angela
Hi Angela, Dr. Lawton is doing the surgery at UCSF as long as I do not back out before then. I am scheduled to be at UCSF from the morning of the 8th until four or five days after craniotomy on the 11th. So until the 15th or 16th...ish. I am technically homeless and living temporarily in an airBnB until the 8th. It would be really nice to have a bit of support as I have none outside the medical folks around this. So very, very kind of you to offer.
Richard
Amani- I am so glad you are seeing Dr Lawton - I have only heard good things about him. I will be more than happy to be there for you.
I sent you a friend request so you can provide me the times and what building etc.
Angela
Amani: Best of luck to you! I have had four embolizations and they are all different. My thigh was sore and I remember my kids saying they "smelled" the glue. THe unknown is always the worst in any situation. I had general in all, which I don't care for. Ironically my first embo was January 8, 2009 so its its been six years and I am ok. I will send positive thoughts to you. Through my experiences you find out, whether family or friends, are there for you. While it may be upsetting I felt it "simplified" my life. Best of luck!
Mare