The out comes of an AVM Bleed

Hello Everyone I’m writing because my Father-in-Law has an AVM. When he was 35 it was discovered because of seizures but, never a bleed.
No one in the states would touch it because it was too large so he went to Canada and Doctors there helped him. I don’t know the terms but he went in and basically glued off the feeding veins to the AVM
So now 32 years later w/out any bleeds he had his first bleed Sunday 1 Am in the morning and Rushed to the nearest neuro Hospital. Sunday when we left him he was a Little drugged up from the meds that were given for all the tests they gave but he spoke and made eye contact. Then Monday we go in and he didn’t open his eyes or speak. But I did notice that he was squeezing my mother-in-laws hand as we all spoke to him
So I checked his other hand to see if he was just involuntary doing it but he wasn’t so I slipped my hand in his and he squeezed it over and over.
He moved his feet and legs but wouldn’t open his eyes or talk.
Plus the doctors and nurse weren’t very helpful in any way of letting us know the process.
So Tuesday we were told no progress was made and we talked w/ his dr who explained after 2 days the ups and downs of the process. He has all 4 veins feeding his AVM which is what happened when they first treated him years ago.
So we all go in to see him and he opens his eyes and smiles! (Oh what a relief it was to see this!)
But, his language was affected from the Brain swelling so now he uses the wrong words and Rambles on at times when no one is speaking to him. I told my husband I think he hears and understands what’s being said to him but he is not using the right words. Because later on in the day Tuesday they were trying to get him to eat and he wouldn’t so they called his 2 sons in to calm him down. Then my mother-in-law went in and tried to get him to eat but he said he doesn’t trust women. Then he wanted to speak to the doctor and he said they won’t call him(The Nurse). So my husband pretended to call the doctor and Dad know it wasn’t real and smiled and said Call him.

So As for eating he kept saying Would you eat it? and everyone said sure …so he said then eat it. So he didn’t eat and my husband said to him “Ok dad you won this round” and My father-in-law laughed. So I don’t know it’s pretty funny thinking about it cuz the man is one Stubborn mule. But is it possible he really know’s what’s going on around him?

Today Wednesday he seems to be thinking more before speaking that’s my husbands take on it anyway…He is a professor in math at a local collage and my mother-in-law told him today that she called the school and told them he wouldn’t be teaching this semester…my DH said he made a face like his dog just died…(I would have never told him this now)…But he seems to be reacting to more things now. But DH says there are delays before he speaks and sometimes he doesn’t get the words right but when u figure it out and ask is this what u mean he’ll tell you Yes or no. I also said maybe it’s a good idea now to have the doctor talk to him as well when he talks to the family. I figure at least he doesn’t feel left out and kinda like a child but I don’t think everyone agrees w/ me…Which I could be wrong I never had to deal w/ anything like this I’m just figuring I’d want it done for me…But they say he doesn’t understand what’s going on around him.

What I want to know is they mentioned Physical Therapy and speech therapy but, he is 67 and a very strong willed, stubborn person. But, I have been reading through all the posts and I was wondering about others experiences w/ the AVM bleeds and swelling that caused them to have physical therapy. Was there a huge deficit or w/ therapy u were able to get back to some what of your normal self? Could there be Personality changes?
I don’t know too much about this but I’m trying to learn as much as possible in the 3 days that this has happened! HEHehE…I know that’s impossible but, I want to just know other outcomes of everyone else.

I’m sorry for the LONG post…I’m just a concerned Daughter-In-Law…

Thanks in advance for reading this and I appreciate any feedback!

Emily,

I know this is a rough time for you and your family. Stay strong.
My grandfather was a stubborn man too and I sat with him alot when he was in the hospital with only 1/4 of his heart working. He had alot of the problems you are relating in your story.
As for your questions. I ramble and still turn my words around 11 years later but it is much improved now. This was after my bleed and surgery.
I never had to have physical therapy but I want you to know that we are all here for you and your family.
Every bleed affects us in many similar ways but also each person is different. It sounds like the3re may be some swelling in his brain right now that will diminish with time.
You question about having the Dr. speak to him when he speaks with the family may be a good idea. It sounds like you father in law is a vedry intelligent man and he may be feeling like he has lost all control right now. I felt this very badly after my rupture and I wanted to know exactly what was going on and what was happening to me. It may not be the best of news all the time but it gives you a feeling of at least knowung what is happening to you and I was very adimant about it.
It is a very hard thing for intellectuals to lose function but to still have your mind working. It drove me crazy at first becasue they wouldn’t tell me anything so I insisted that they tell me everything.

Hello Emily .
I am impressed by your desire to find ways to help and your compassion and love for your father-in-law( as well as the rest of your family ) in this trying time .
Your fatheri-in-law reads to be doing well all considered . Why aren’t the physicians speaking to him directly ? Why is it believed he does not know what is going on ? Reads as if he’s at least aware , have you ever tasted hospital foo d ? Most of it is distasteful even by sight…Brains are delicate yet strong enough to make repairs . Brains do not like blood and they act up when presented with such assault . A few days and he is speaking , that is impressive . Things do get jumbled in there-words , thoughts and feelings . The physical self and the emotional self are truly one , each a working part of the whole person . As with any injury the healing takes time to calm , sooth , heal and exercise into proper form again . As far as I am aware the physical and occupational therapies are a working part of the healing process . Everyone is unique and we all have our own timw table in which we heal and progress in a forward and fluid motion . There are those days that can be backward stepping , and days where we are not certain who we mught be at any moment but , our changes in personality are magnified yet not foriegn to the human being as we are different parts-even new parts of the whole of us even without a bleed in the brain . We as human beings are all about change , integration and adaptation , yes ? Every moment we are a rather new us .
Yes patient and physician communication is an imperative , in my opinion . We may not understand everything but we still feel respect , concern and compassion . Very important to be spoken to and not at -or about as if one does not exist or have a working mind . Speech and physical therapy seem to be very usefull to to help one to regain there internal and external strength . It can be a lot of work to lift your head , find the correct word , squeeze a hand and walk about . It can be beneficial to have a helping hand guide you a strong shoulder to lean on if need be and a "good job ! " at accomplishments .
What a brave and strong man your father-in-law must be . What a loving daughter-in-law he has . I must tell you Emily that no matter where this journey takes him he is blessed to have you . As your mother-in-law is aware these are uncertain times and many ups and downs may come and go . A great deal of learning and hand holding is necessary . I am sending positive thoughts and loving prayers for the strong willed and stubborn ( which are excellent traits to posess ) professor and your entire family .
Be good to you . Take car of you .

Sorry that your father in law and the rest of your family is going through this right now. As for the question about PT, I needed it because I was in a coma and couldn’t move for so long that I lost all of my physical strength. I literally couldn’t lift my head. There absolutely can be personality changes, degrees depend on many factors, size of bleed, where in the brain, etc. And, having the doctor talk to him as well is a great idea. Yes, you feel such a loss of control when you’re in that situation, so anything that you can do to give him some back would be a good thing. Over time a lot of the deficits can improve, but you have to be patient and give him time to recover. It’s no small thing that he went through, so it may be a while before you see improvements. I wish you all the best of luck.

Well I want to thank everyone for there kind words, support, and experience…it’s well appreciated!

I went to see him today and What an improvement! I’m amazed really…He is talking and making sense and choosing his words even though sometimes there is a delay to get them out but It’s an improvement from Monday! The nurses are asking allot of him but it’s the normal stuff and he is such a stubborn mule he refuses. So when we came in he was of course in a good mood and the nurse said to me “This is a perfect opportunity to get him in the chair” I can’t agree more! He resisted at first but we told him “Dad the quicker u get moving w/ this stuff the quicker u get home!” So he liked that and went in the chair but he’s worried about too much at one time which I can understand.

He also mentioned his grandson(My son) being frightened by him because of his speech and My DH and I explained to him We sat w/ my son and told him and he is understanding he just wants to give his Papa a BIG hug and kiss! Anyway…I don’t know how the progress goes but it’s hopeful …He doesn’t see any progress but we informed him that he didn’t see what we saw Monday and Tuesday…So he was comforted knowing he’s doing better! And it’s only been 4 days!

I still wouldn’t mind hearing other stories…But thanks everyone I so appreciate it very much!

I suffered a avm bleed about four years ago. I have not memory of it happening or being in the ambulance. When I finally woke up after the surgury, not sure how long it took, I did’nt know who any one was. I was 38 at the time with a husband and three kids. I thought I was still in high school living with my parents. I was put in a nursing home for a while and finally able to go home. I now have short term memory loss and A LOT of confusion. This site is really difficult for me to navigate. I did have physical therapy and occupational therapy right after I got home. My muscles were weak because of the lack of exercise and the occupational therepy was to learn every day task and important dates like birhtdays. A lot of it is still a blur. I’m doing much better now but sometimes it’s hard. I know I’m not who I was, it has changed me in a lot of ways. I’ve done a lot of reading about what happened to me and changes in personality is normal. I have an understanding husband, most of the time! My kids are still young and try to understand but don’t always have a lot of patients with me.

Hi, the ordeal must be agonizing, I am so sorry.
I had the “rambles”, nice way of putting it! I think it was more like Turette’s Syndrome because apparently I said some things that I would be mortified if they were repeated!
I was was 42, so he’s not too old for this. Its 3 years later, still dealing with it, but family, love and great care make all of the difference in the world. I suppose personality changes are a potential issue, but its probably more of a trauma issue than a hard-wired changed in personality. Don’t be afraid of therapy (physical, cognitive or mental). There are some great resources out there!

Thanks so much for the stories it helps me understand a bit about this!
Anyway…Friday was a Set back for my Father-in-law…They believe he had a seizure! He was suppose to be taking Seizure meds and for 3 to 4 days they weren’t giving it to him til my Mother-in-law asked if he was getting it then BOOM! he had a seizure! Is it possible to have a seizure after 3 to 4 days without the meds even though he’s been taking them for 30 yrs? My brother-in-law doesn’t think it has nothing to do w/ it at all…He says since he’s been taking them for 30 yrs it’s built up in his system and after 3-4 days w/out them shouldn’t make a difference…Is this true??
Plus he went back to saying very few words! I can’t get a answer from the dr…Cause I’m never there early in the morning…All I wanna know is about swelling on the brain is how long does it “GENERALLY” take to go down-a Week, weeks, can it take a month? I’m in the dark here and very upset w/ this …I’m so exhausted and tired …

He’s scared because he keeps saying he doesn’t feel right…I can imagine w/ the bleed and swelling it can cause a array of problems I just want to know in General from other individuals that had a Brain bleed and swelling …Thanks so much…If I’m rambling I’m sorry just very tired …This week has been a emotional roller coaster…

Emily,
I have questions if you have time to answer them. If not i understand how busy you are. But where is his avm located? was that all he had done 30 + years ago was embolizations? I’m just wondering cause my biggest fear it just what has happened with your father in law. Having something happen years after you think its gone. I know medicine that long ago isn’t anything like today but still. Everything with an avm is a waiting game. Sorry i couldn’t be of any help to you. Thinking of your father in law.

Andrea Fisher said:

Emily,
I have questions if you have time to answer them. If not i understand how busy you are. But where is his avm located? was that all he had done 30 + years ago was embolizations? I’m just wondering cause my biggest fear it just what has happened with your father in law. Having something happen years after you think its gone. I know medicine that long ago isn’t anything like today but still. Everything with an avm is a waiting game. Sorry i couldn’t be of any help to you. Thinking of your father in law.

From what I understand his AVM is in his right side not sure exactly it’s over in the middle area I believe I may have to find out exactly where but I know it’s on his right side. Yes from my understanding that’s all that was done was a Embolization. But then 30 years of no bleed is pretty good…He never had a bleed from the start so this is his first. Everything started w/ a Grand-Mal seizure and that’s how they found the AVM…From what my mother-in-law has said is that 15 yrs ago they went to a New York faculty and the Doctor there told them that since he is in his 50’s his chance for a bleed is slim…Plus they said they wouldn’t know what to do for him anyway! Now though I hear they have stuff that PPL only dreamed of 30 yrs ago! So it’s a plus …The Doctor he is seeing now has said that he has shrunk AVM 's bigger then My father-in-laws. I’m going to find out the details of his location and size!

Emily- the last time I had gamma knife i was on steroids for swelling for just a few days. This time, its for more than a month. So, the answer: it depends. Also, there’s more than just steriods for swelling. You should also discuss some stronger meds (other experts on here not me) that can control this feeling.

Emily said:

Thanks so much for the stories it helps me understand a bit about this!
Anyway…Friday was a Set back for my Father-in-law…They believe he had a seizure! He was suppose to be taking Seizure meds and for 3 to 4 days they weren’t giving it to him til my Mother-in-law asked if he was getting it then BOOM! he had a seizure! Is it possible to have a seizure after 3 to 4 days without the meds even though he’s been taking them for 30 yrs? My brother-in-law doesn’t think it has nothing to do w/ it at all…He says since he’s been taking them for 30 yrs it’s built up in his system and after 3-4 days w/out them shouldn’t make a difference…Is this true??

Plus he went back to saying very few words! I can’t get a answer from the dr…Cause I’m never there early in the morning…All I wanna know is about swelling on the brain is how long does it “GENERALLY” take to go down-a Week, weeks, can it take a month? I’m in the dark here and very upset w/ this …I’m so exhausted and tired …



He’s scared because he keeps saying he doesn’t feel right…I can imagine w/ the bleed and swelling it can cause a array of problems I just want to know in General from other individuals that had a Brain bleed and swelling …Thanks so much…If I’m rambling I’m sorry just very tired …This week has been a emotional roller coaster…