Hello eveyone. I am not exactly new as I have posted before. I need your help. I am a nervous wreck. I have been diagnosis with AVM. They are going to remove it Aug 31st. I have had so many test. One of them being ceberal amigram something, most of you know what I mean. They got the results and suggest surgery to remove the AVM. They scheduled then change, then change it again. OMG I can’t take it. My dr is on vacation is the reason for most of the scheudle change. I can’t sleep, I snap at everyone. My husband take most of the hit (poor fellow). I cry a lot and sometimes I don’t even know why. And every time I have the shooting pain I think this is IT & I will not see my family again. I really would like to know what to expect after surgery, I know every surgery is different but can anyone tell me what they went through after the removal. What about the pain? Also they said that I have to be out for 8 weeks. (Ok Bank of America I hope you understand the mortgage is going to be late)
Can someone who has had the removal tell me what it is like when they wake up. And what the down time is like. Please… Ya’ll are all I have. Thanks
Phyllis- Sorry, I can’t specifically answer your questions about the surgery but did want to pipe in about the stress and crazyness that you are feeling now. And I don’t normally recommend people just randomly taking a bunch of pills…but have you thought about asking for some Zanax for the anxiety? It really could be just what you need to help cope over the next few weeks.
I was in pretty bad shape about a year ago and feeling very much like I just couldn’t handle some of this…and I fought everyone who suggested getting the Zanax. But I ended up getting it and it helped. I actually only took it once cause things started to get better. But silly as it sounds, just having the pills and knowing if I was super stressed out it was there…helped. The security of knowing there was something to keep me sane ended up being all I needed to keep me sane!
They don’t make you a zombie. Just help you from snapping at your loved ones and crying quite so much.
Thanks Shalon ----I am taking xanax but guess what IT NOT WORKING----sorry I didn’t mean to scream. Thats just how whack out I am. I am trying though to calm down, listening to soft music, sitting by the pool in the moonlight is helping and having folks like you. Thanks
Well then I say you ditch the Xanax and move on to Margaritas! That HAS to help calm you down, right??? What’s a little alcohol abuse for a short time frame??? Can’t hurt in the least.
Now you are talking my language — Thanks for making me laugh. I needed it.
I highly recommend margaritas! Works for me every time! Phyllis, seriously, about the surgery…yes every one is different, but I will give you my story. I don’t remember much before I got to rehab, which was about 2 weeks after my surgery. During that time, I developed meningitis, which I understand is quite common with this surgery. So, for that I was on heavy duty antibiotics intraveniously for 3 weeks. Once I was in rehab, I was so weak that I could not even lift my head. I had been kept in a coma for a couple of weeks before my surgery after my bleed, so it had been some time since I had moved. I had heavy duty physical therapy starting almost immediately. Gradually my strength increased and I learned to walk on my own again. I had splitting wicked headaches for a couple of weeks after my surgery. They gave me pretty decent drugs for those, but sometimes, I’ll be honest, it didn’t always work. It took a long time before I could stand up on my own, without help, I was still very weak, despite the rehab. I felt like I was in a fog for months afterwards, everything was just a little “off”, is the only way I can describe it. I left the hospital about 6 weeks after my surgery. Still too weak to do much of anything without help, but I worked really hard to regain my physical strength and now I’m in the best physical shape of my life. I still have quite a few neurological effects, but most of those are because of the bleed and not necessarily the surgery. It really depends where in the brain your AVM is located as to what deficits you may have after, but your neurologist should be able to give you a general idea of what you can expect as far as any possible deficits go. I hope I have helped a little bit. I understand your anxiousness and I’m sure you’re frightened as well. Try to stay upbeat and drink lots of margaritas! :). I wish you the best of luck with your surgery. Please let us know how everything goes, as soon as you are able. We’ll be here to help!
Hi Phyllis, I know exactly how you feel about being nervous. My AVM’s not operable because of the location so I’ve actually been waiting since April 30th for my insurance to approve Proton beam therapy, they finally did and I go in on Sept 1st and 2nd for my treatment. Everyone has given you great suggestions for coping and remember that it’s okay to feel everything that you’re feeling. I’ve had weekends that I’ve literally cried non stop, and I have good days also. I don’t know what it’s like to have the surgury but I know one thing that has helped me is yoga. Not anything over streneous but hatha yoga. It involves alot of breathing and holding poses and really has a long lasting effect. I take pain meds everyday but the yoga has enabled me to lower my doses during the day anyway. The breathing is something that you can do any time of the day or any where. Do whatever you need to do to take care of you. As far as your not sleeping, my pain center put me on Pamalar, it’s actually used for facial pain (which I have alot of) but it also really helps you to sleep and doesn’t make you wake up groggy. You should ask your doctor for something to get some relief so you don’t suffer. Hang in there and try to stay positive as hard as it is. Please let me know how it goes for you. Take Care.
Dear Phyllis, my heart goes out to you. I hope you are able to find some peace and calm as you await this procedure. I will pray for you.
Thanks guys for the support & suggestions, expecially the margaritas tip :). Thanks most of all for your prayers. I will keep ya’ll updated. Keep the comments coming I love hearing from you.
Hang in there…All you can do is keep busy and let your formal life go on until you get the answers. I’ve been through Proton Beam Radiation, had a brain bleed six months later and am a miracle. So all you can do is hang in there, whatever happens, happens…But life goes on!
Phyllis, another piece of advice, which you are already following. Don’t keep it inside. Write about what you’re going through daily and you’ll find lots of support, occasionally some advice, but mostly lots of support. We’re here for you.
Thanks Ben…right now I can’t stop crying, I don’t know what is wrong with me. I am just having a terrible day, but I will be ok…
Phyllis, we all have those days, I assure you. I will tell you that I went on anti-depressants about a month ago and they are helping me quite a bit. I wasn’t at all depressed right after I got out of the hospital, it all hit me later, when I realized all that I can no longer do. I was totally against the idea of drugs, but I also didn’t want to keep feeling like I was feeling. It doesn’t make the bad days stop entirely, but it does make them much easier to deal with and they don’t last as long. Just food for thought. But like Ben said, don’t keep it in, talk to someone about it, or go see your doctor and tell them about how you’re feeling.
Okay first of all, my favourite quote:
"I gain strength and confidence by every experience in which I must stop and look fear in the face….I say to myself, I’ve lived through this, and can take the next thing that comes along…We must do things we think we cannot do."
Phyllis, you need to get or get back your fighting spirit. OF COURSE you have a ton of fear and anxiety and part of that, in my opinion, is the doctor’s fault for not giving you the support and reassurance for this surgery that you need and DESERVE…makes me SO angry. The crying is SO normal!!! That is the stress of this situation and Judy is right, just let yourself feel everything that you are feeling! But you also need moments when you are tough and fight back too!
Because what you are doing is saving your life by having this surgery. You are doing what you have to do to lead a long life and you need to use your energy now, not to worry your self sick, but to put in place everything that you may need after your surgery. I hope you have some family and friends around to help out and if you do, make them some lists of what they can do to help you. Find out what and where your physio and rehad is going to take place. Are you going to be able to meet with your doctor again before the surgery to ask more questions?
You will have peace when the surgery is over that your AVM is gone and can’t threaten your life anymore. I cannot even imagine having to face brain surgery but I think if it was what was going to save my life, I’d have to do it.
Did the doctor give you the percentage of risk of the surgery? When we were considering surgery for my son, our neuro told us the % of chance of deficits (because of where it is) and then the % of recovery from those deficits that we could expect and that was reassuring.
My thoughts are with you Phyllis. All the strength you need is right there inside of you.
Thanks for those encouraging words. Yes I will speak with the Dr before the surgery. I have questions that I have for him wrote down and my husband will be there also.
I haven’t had the surgery, Phyllis, but I wanted to let you know that I’m here for you…and praying for our recovery.
I hope you are holding on during the stressful time. My stress all began post-surgery, but my suggestion would be to focus on all the pieces that you can control, like trying to be healthy and positive. Who knows, there can be some good stuff to learn within all the challenges. I’ve felt many days of being overwhelmed by it all, but eventually I always figure out a new way to handle it, and feel better eventually. It’s amazing how tough some days can be, but somehow you get through it. I look back at my journey and can’t believe how much I got through, it’s a little surreal. Good luck to you, I’m glad you have good support!!!