I need advice from anyone who has had an embolization on their cerebral AVM. I don't really know what to expect afterwards. Is it very painful? Will I be "cranky". I'm trying to prepare my children, but they just get pissed off and walk out of the room on me saying their sick of hearing about it. I realize that this is probably how they are coping with it, but it sure does hurt my feelings when my daughter spits it out with such venom! Even my sweet son isn't very sweet any more...
Thank you for listening to my pity party. Any info about what to expect after the embo will be much appreciated.
I only had one embo, but I remember I was not well off. When I first ‘woke’ up I couldn’t stand any type of light. I was cranky, but I think it was because I woke up with an Central venous catheter and it was stitched to my arm. Not cool! Never had stitches and no one told me it was going to be there. The pain was about an 8 out of 10. I had trouble opening my mouth all the way, but I am sure some were happy about that. I did feel a little sick to my stomach. My sister told me I was worse off after the embo than I was after the crainiotomy. I would honestly have to agree with her. Do you know what kind of glue they are going to use? Best of luck to you! I am sorry your kidos are upset right now and I hope they step back and see the whole picture. You have every right to have any and all of the feeling you have right now and I guess they do as well, but they need to be here for you right now just as you would be for them. Many many prayers and well wishes to you! Good luck dear!!
Good morning, Connie
Although I have yet to go through any treatment, I have the same questions. As far as your kids are concerned, yes this is probably how they are dealing with your condition. A kid (no matter the age) does not want to be forced to think about anything happening to their mom. They need their lives to be normal, and this is so out of the ordinary. Give them a break (and yourself), and plan something fun with them before your procedure. Take a “vacation” from the subject, and you may be surprised…they may bring up the subject. You know you have plenty of folks here to share with, and we will all be thinking of you on the 7th.
Hi Connie, I only had one embolization so far, but I found the surgery the easy part of my recovery, I felt slightly nauseous from the anaesthetic and tired, but was up drinking tea in intensive care a few hours after the surgery:) they gave a prescription for chronic headaches but only had a small bit of pain compared to the bleed so hopefully will be the same for you:),best of luck with the surgery, and I hope it’s a success:)!!
I’m sorry your kids don’t want to hear about it and aren’t the comfort that one needs when facing a serious, unknown procedure such as this.
I had a embolization on May 20th and upon awakening, I had no painful effects at all actually, besides the artery cut on my right groin.
What I DID have is loss of peripheral vision in my right eye which is still going on today, July 3rd. I guess it’s something I’ll have to live with. I’m getting some used to it but still bump into things on my right side and occasionally knock things off a table if it’s on my right side. BUT…NO… nothing changes mentally and I’m no more a grouch than I ever was and that was hardly ever anyhow. I loved people before and I love people still today.
I hope those kids of yours become a comfort to you and help you thru this.
Connie,I so sorry,I didnt know you were going in for this treatment,Ive never had it done, but I think your family loves you so much that they are just so scared that they are acting out or sorts too. They dont know what to think when they see you are worried and you have every rite to have a pitty party, Im here any time you want to talk,Your family just does not understand what embolization is or what to think about it.but one things for sure!!! They love you!!!and so do we,You will be in my prayers as you are always !!love ya!!
Connie…You’ll not be alone in the procedure room. Besides the doctors, the technicians, the anesthesiologist… a group of us, your friends here, will be with you too. Get back to us when you can , OK???
Connie: first of all, no pity here, sweetie, it syour life and your feelings. My children sometimes react differntly than I would expect sometimes but it is usually a defense mechanism to help them cope and they are scared. I had three embos all different experiences…my first one was not managed great with pain meds and my dr. had me on lots of steroids but it was not horrific pain either, I had alot of reactions to the meds I was on…last two were very very management. Second and third one was easier…so indivual but you willl of course need help and support.My groin area was sore, that was my complaint…after three I have scar tissue but its also manageable as I am on my feet all day at my job. You will be managed with meds for pain; honestly after each one I craved watermelon…good for fiber, water and sugar! I will keep you in my prayers and all will be well! I will be getting my fourth one sometime in August…its also the unknowing that makes it more difficult but you are strong my friend and can handle it! I know it! Your family here loves you and we get it! xoxoxoMare
connie,praying for you my friend,all will go great,please, when you are up to it ,let me know how you are,im thinking about you every day and you have not even had it yet!!!,ill be praying every day till I hear from you,God is right beside you and all your friends,we love you dearly!!! talk soon!!hugs,
Sending best wishes for a smooth procedure tomorrow! My AVM had ruptured and I was in the hospital when the embolization was done, before my cranial surgery. I don’t really remember the pain as much as I did have some extremely weird dreams coming out of anestisia and I cautioned my family to speak very plainly with me when I was in recovery – no jokes or kidding as these commend morphed into whatever I was thinking. I believe that children can’t comprehend what an AVM, embolization, or other surgical stuff really are. All they know is their most important person in their life is in distress and they are coping. They will be so happy to see you after its over and I am sure they will be make it up to you. God bless and hand in there!
Andrew had five. He did very well afterwards. They monitored his B/P very closely for 24 to 48 hours, he had to lay flat for approx. 4 hours and he smelt like rotten garlic and said it tasted like someone put an onion in his mouth. This is from the onyx material they use. The only side effect I remember him having was after one of his more extensive embos he had frequent pressure headaches. These probably occured for a couple of months afterward. He never had much brusing or tenderness in his groin where the insert the cath. They put an art line in his wrist to continously monitor his B/P (request it be put in while sedated, its less painful). Hope this helped.
My dear Connie, I haven’t checked in here for more than a year! Wish I’d have logged in early enough to wish you luck with your embo, but you know I’m hopelessly stuck on facebook.
I’m guessing that everybody experiences this procedure in a slightly different way, so I can only hope that yours was bearable and you’ll be back as good as new or even better than ever when your treatment is all done, however long that may still take. I love you my friend, be strong now and I hope we’ll talk soon