Hi I’m new. My name is Debbie. On June 28, 2021 I had a brain bleed which caused a stroke. I was coherent enough to tell my husband in the garage I think I’m having a stroke. I got a terrible pain down the top of my head that felt like a knife had entered and then I went cross eyed. I’m not sure if i was cross eyed but I felt it. From there on it’s a blur. My poor husband called 911 and I started dry heaving and that’s all I remember. They took me to a nearby hospital and by night I turned for the worse. My brain was swelling, they put a drain in and flew me to Portland 2 hrs away. I have no memory of my first time on a helicopter. They put me in an induced coma and it was about 2 weeks before I woke up. I stayed in the hospital a month. I could barely move when I got up. Had to learn to move again and all that stuff … they finally told me about AVM and what I have. So I had 3 embolizations going thru my groin area and those got rid of the entangled veins, thru the last 4 mths. Now it’s time for surgery so they won’t come back, Dec 9. I’ve been reading all I can. I haven’t run into anyone having it the vermis cerebellum but it may just not have been said. I know this area isn’t the best and it most likely bleeds quite a bit. I’m scared. I’m 66 and wonder how I’m going to end up. Will I be able to swallow? Talk? Walk? If I’m like now I can live with it. I’m dizzy but it gets better and better. I want to start walking daily, after my surgery. My Dr is very good and very careful. All anyone ever says about him is he’s so meticulous! That’s what I wanna hear. He’s a blessing because we couldn’t find anyone the night I was flown to Portland. He said he’d do it and knew what to do. Almost dancing with happiness I was told. I’d love to hear from anyone with a similar story or just encouragement. It is a 3&1/2 to 4 size. So at least it is operable. Just be glad when this is behind me and not dreading the date. Thanku everyone…
Welcome Debbie. Great you found us, but too bad you had a reason to! I had an AVM left temporal that bled in 2016, gamma knife and now obliterated. You are on the treatment road, and have a plan in place, that is excellent. If you are like, I would wish Dec 9th was tomorrow so I could get on with it.
If you click on the magnifying glass in the top right corner and enter vermis, you will see a couple of threads show up. Not sure if they will be helpful or not. Once again welcome and take care, John.
My bleed and avm were on the vermis of the cerebellum. I remember just how frightening it all is.
Mine bleed occurred first thing in the morning. It felt like a clever had been stuck into the top of my head.
I also had an embolization and the craniotomy. It’s been almost four years and although it’s been really hard I am a lot better and still improving.
For me the worst of it was the dizziness, and nausea. I did get some physical therapy and that helped. Just remember it is a long slow process that takes a lot of patience.
Best of luck
Thanku for your message. I super appreciate it. The whole ordeal will have been 5 mths long and it’s unbearable to wait and wait and not think of every possible thing that could happen. I’m sure, as the Dr said, I will most likely still have dizziness and vomiting. I just want to wake up alive. Did u lose alot of blood? So glad your better.
Sorry for the late reply. I’m not on here much.
I don’t think I lost much blood. They never mentioned it.
It’s very hard leading up to the surgery. I wish I had some helpful advice for you. I just did my best to get through it.
I’m happy to answer any other questions. Good luck
@Debbie I can see how you are bothered by your upcoming surgery: you’ve posted in a few threads. Some of those threads are very old, so people may have moved on, changed email addresses etc in the meanwhile but hopefully you may get a response.
I think it’s great that @Cancrd had an operation in the same place and it is always more encouraging to find a friend like this. I do understand that you’re really quite concerned about the ability to swallow. I assume it is one of the more likely troubles with dealing with the vermis.
I’ve not had the same challenges as you but I’d encourage you to talk to the hospital team about your concerns – how they would know you are struggling to swallow? What would they do initially? How would they look after you?
Not being able to communicate would probably be one of my biggest fears but I have read on here of people waking up from an operation and being unable to see and unable to speak. The encouragement I would want is that these things are often temporary and that what happens immediately after the operation is not to be assumed to last forever. When you’ve had a craniotomy, your brain has been majorly assaulted and needs time to recover. It’s that time that is the healer, time for swelling and disturbance to calm down again and I’ve seen at least a couple of stories here where people have come round post op unable to speak and/or see and it has only been a matter of letting the invasion calm down.
What have the team already told you about your operation?
Very best wishes,
Thank you !
We’re u able to swallow ok? That sounds like one of the problems we could have. It scares me. I’m sure it’ll be ok but I can’t get it out of my mind. My surgeon is 2 hrs away and we really don’t communicate too much. I could email him thru his helper and ask about what he would do or if he thinks it would happen. It’s 2 weeks away. Just want it over. Thanku for your response!!
I did not have any problems with swallowing. But, I was very dizzy, had double vision and was nauseous. I’m told that area is very involved with balance, and that has been a big issue for me. They told me that the cerebellum has a huge ability to compensate for damage. More so than other areas of the brain. My recovery was pretty good at the beginning, then slowed down, but I am still improving now, even though it has been four years. The hardest part is sticking with it and being patient.
Best of luck to you
Yes I can see that happening. I had a stroke when my AVM bled. I couldn’t talk very well at first when I woke up but by the beginning of the week I could. I had double vision for a few days even after my embolizations. I had to learn to walk again too. I was in the hospital a whole mth. I was so so happy to be home. I can’t wait till this is over. I’m just hoping there’s not another one hiding somewhere.
My biggest fear is not swallowing when I wake up. Today I decided to stop worrying about it all. Who knows what all will go on. I’m thinking too much about it. I guess of it happens the hospital is where I should be.
I know worrying is not going to help and I may never have to go thru all the fear my brain has made up… so I have a week and 1/2 left before I go in. I’m going to breath…
Thanku for the visit. Take good care
It is completely normal to worry about the unknown. I did very much the same. But if you can persuade yourself to trust the hospital, it’ll save you worrying about it so much beforehand. I had a perfectly gettable-throughable experience in hospital with my dural AV fistula (so, different from the cerebellum) and I think it was the fear of the unknown, the fear of those big risks we have to sign off before the operation that was bothering me. If we can persuade ourselves not to worry about some things unless they actually happen, life is a lot easier and often enough more stress-free.
When are you going in?
Yes Everytime I say something to family or friends they tell me “trust your Dr. He know how to do this” . Sometimes honestly I just need to hear that. So Thanku!! I appreciate that. He’s a great Dr. He’s up in Portland Oregon. I don’t ever hear about anyone in my area. But I don’t know. My surgery is Dec 9. My sister will be with me. She’s going to stay till Sunday the 12th.
Thanku for the wise loving words😊
An AVM is a rare condition, so that’s why we have this international online forum: there’s not going to be a support group for this sort of thing in your local area.
I found my doctor to be a bit of an “engineer”. Very much centred upon the trouble at hand, very focussed on what he was going to do and a bit difficult to talk to man-to-man. He was less good at the patient interaction, I thought. At least, this was my impression when I first met him. However, I decided that if I was to trust my brain to someone, actually it was the engineer, the man who might be a bit less good at the chatter but very much in command of what the mechanical problem was with my brain plumbing and what he was going to do to sort me out. In that way, I was comfortable with the op.
In every other emotional way, I was beside myself. If you can do better than me, put those worries out of your mind. It isn’t worth it.
I didn’t feel right post op either and I bothered my way through the ensuing year-and-a-half but was finally persuaded that there was no residue that needed anything doing, it was simply a matter of not over-analysing how I was and settling into the new me.
None of this is easy. It’s the biggest mental challenge I hope any of us have ever had. If you can, let that part of it pass by. It’s worth it if you can.
And good luck next week. We can cheer you on from the sidelines if it helps.
That sounds good! Thanku. My surgeon is really awesome. He doesn’t talk much but has a huge smile all the time. When my family found him, because no one would do it here, they flew me to Portland. He was dancing around smiling and said he could do it. My sister’s really adored him. He has a very high education and all that possibly could be needed. I feel he was found for us because I was running out of time. I slept good last night! I’m trying to let this all leave my mind and be at peace. It’s the only way to get thru it. If a friend calls and talks to me or asks question I’m very near tears, but that’s ok. It’s a release of tension to me. Always has been. I’m a super easy crier… again, Thanku. U are very wise and it sure helps me right now
Good luck tomorrow. I’ll be sending positive thoughts your way
U remembered me? That is so sweet! Thanku from the very most bottom of my heart… I’m ready for this to be done. I hope I make it! Thanku…we are getting ready to go up. It’s 2 hrs from here. I’m relatively very calm…
I think there’s two of you up on 9th: you and @msngpcs so both of you have a good day tomorrow! I’m thinking of you as well.
The angiogram went well. They were able to seal it up instead of put pressure on it. The doctor says that I’m all clear; no residual avm in there. I did however almost pass out before they let me go, but I’m home now. Thank you for thinking about me.
Well done. And that’s really good news. Hopefully we’ll hear from @Debbie in a few days in a similar way.
A couple of years ago, we had a mad month when swathes of people were going in for different things in the same month. I wished them all well on the outbound trip and then bothered myself to bits waiting for good news on the other side, so it’s good to know you had a good day. It’ll be at least a few days before we hear from @Debbie
Great to hear, minus the almost passing out. You must be so relieved. John