HGello everyone. We hope everyone is doing well with their AVM.
I have a questions to those who had more then one event of bleeding. I'm trying to educated myself and know any warning signs that could help me be prepared.
Is there or was there signs before bleeding occurred? I'm assuming headaches would be the first and main symptoms before an event. Please correct me if I'm wrong.
I know you can't prepare for anything like this but I hope maybe.
Thanks in advance.
Andy
I've been told some get the mother of all headaches--nothing like any headache they've ever had. I suspect some have had bleeds that they didn't know about. My guess is the worse the bleed, the more the pain and symptoms.
Dizziness, vision blurring, and (maybe, guessing here) stroke like symptoms: disorientation, inability to speak, not knowing where they are, etc.
Curious to read what other's say.
NOTE: Chari's AVM did not bleed to our knowledge. Her's was found when she had a grand mal seizure. She did have a major headache in that time, and had numbing in her arms/legs a few weeks prior to the seizure.
Ron, KS
This is a great question Andy, and I look forward to more responses. I've been lucky enough not to have any bleeds so far but any experiences will be a great help just in case.
Dionne
I thought others may want to know too. I hope there is more responses. It would help a lot of others.
Hang in there all those who need support.
Dionne G said:
This is a great question Andy, and I look forward to more responses. I've been lucky enough not to have any bleeds so far but any experiences will be a great help just in case.
Dionne
When my 14 year old daughter had a bleed, she had complained of the "worst headache ever" during school, but she was still able to go to volleyball practice. She felt better after pain medication for a few hours, and then out of the blue, started screaming and crying and holding the back of her neck with her hands. She wouldn't/couldn't move her head and she wanted to go to the hospital. We thought she was maybe being a little dramatic and got her to relax. Then she started throwing up. The thing that got us to take her to the hospital was that she didn't remember screaming or vomitting 10 minutes after doing it. She was also very unstable on her feet. We didn't know at the time she had an AVM and had bled (leading to some hydrocephalus, which also maybe caused some of her symptoms). For her, it was the headache. On her pain scales of 1 to 10 with 10 being the worse pain ever, she still rates that night like a 40 because it hurt that bad. But prior to the actual bleed, I don't think she really had symptoms except the really bad headache a few hours prior to the INTENSE pain she had. I guess if we knew she had an AVM prior to the bleed, we would watch for intolerable headache, dizziness, nausea/vomiting, one sided weakness, pupil size difference between the eyes or any kind of other stroke symptoms, short term memory loss, numbness/tingling, etc.
Good luck!!
Deb
I guess she has only had the one bleed, and we get nervous sometimes when she has the horrible headaches, nausea/vomiting and extreme dizziness, but her MRI’s always come back with no further bleed. she says she will know by the intensity of the headaches if she bleeds again! hard to know when to be worried sometimes!
Deb, Thank you for this information. And I'm sorry your daughter had to go through this. My wife will have to live with this AVM because they can not take it out. So they Gamma knife 30 targets of a shot glass to reduce the mass. We hope it will work and might need another one in a year or so. I hope not.
Our prayers are with you and your daughter. God Bless
Deb (Sarah's mom) said:
I guess she has only had the one bleed, and we get nervous sometimes when she has the horrible headaches, nausea/vomiting and extreme dizziness, but her MRI's always come back with no further bleed. she says she will know by the intensity of the headaches if she bleeds again! hard to know when to be worried sometimes!
Andy, in my case it was like the others describe: The worst headache ever. I’d had headaches for years, but never anything like this. I then lost vision, began vomitting, became very disoriented. Very typical bleed/stroke symptoms.
Hi Trish, was this your first one? How are you doing now? Hope your doing great and be strong.
I only had my one bleed... but strangely enough I had hardly any serious signs. I don't even remember if I had a headache, I probably did but it musn't of been anything serious (and I had been getting them frequently since I was 10). The only unusual sign I had was feeling sick in the stomach. I remember waking up with it, it was a kind of 'off' feeling and I didn't have much appetite. Although i think i felt better by the afternoon... not that that meant much for what was to come.
But once the bleed happened, i assume, was when things went bad (i could barely walk, i vomited and passed out in a matter of minutes), but it happened so suddenly...
HI, THERE I WOULD HAVE TO AGREE WITH THE OTHERS PAIN YOU CANT DESCRIBE IN YOUR HEAD WORST THAN HAVING A BABY AND THAT’S OME PAIN. PAIN YOU CANT STOP IF WANT GO AWAY WITH NOTHING YOU TRY. I USE TO HAVE HEADACHE A LOT BUT WHEN I GOT THAT ONE AND IT LASTED FOR THREE DAY’S I KNEW IT WASNT NORMAL SO IF EVER YOU GET ONE OF THOSE GO TO THE HOSPITAL RIGHT AWAY THE SOONER YOU GET THERE THEN THEY CAN TELL YOU WHATS REALLY GOIN ON.THE STROKE LIKE SYMPTOMS COULD ALSO BE SIGNS OF A BLEED SO IF YOU HAVE THEM ALSO GO TO THE DOC. RIGHT AWAY DONT WAIT. THERE ARE SOME ON SITE THAT HAD TO HAVE A CRANIOTOMY RIGHT AWAY AFTER A BLEED SO DONT WAIT IF YOU SEE THE SIGNS. BE BLESSED
Andy,
My AVM is very new to me but I'll try to help. I don't know if it actually bled or not but I had a Grand Mal seizure 3 months after having my twins. This was my first attack but I felt terrible for 2 weeks before that. My head 'buzzed', I was dizzier than I've ever been in my life, I stumbled all over and found it hard to walk straight, my ears rung, I can't really explain it but I feel fuzzy a lot and it was worse during that two week period. The best way I can explain the fuzziness is I feel like I'm in a dream or watching a movie rather than right there in the moment. I actually went to the ER on April 1st and I had the seizure on April 5th. They told me that I had vertigo on the 1st and sent me home with Dramamine which didn't work, go figure! I hope this helps!
Jenn
Thanks Jenn, I could understand why the ER would send you home thinking it was nothing as they are not aware of AVM. It is common after you have an event. If you did ntohave a bleed you're lucky. My wife had a bleed and it was hell.
I'm happy to say she is doing well but the AVM will have to stay due to the fact our Doctor says it is to dangerous to totally remove. She had the Gamma Knife treatment in hopes it will reduce any events.
What did they do to you? Surgery? And what is the prognosis?
Andy
Sorry that hers can't be removed, mine can't either. They were going to do an embolization but found an aneurysm that's too close and they didn't want to burst it. I had the Gamma knife as well on May 25th so as you know, now we wait and hope that things are better in 6 months...longest 6 months of my life I'm sure.
I do understand why the ER sent me home but they were going to, and wanted to, do an MRI and they decided not to at the last minute, it's just frustrating. I do think that I need to have the seizure, it helped in my diagnosis although it was scary for my husband. This all only happened two months ago so it has happened really fast.
Do you know how big your wife's AVM is? I've heard that there are better chances for smaller AVMs of obliterating it in one shot of radiation. I hope she is feeling well.
Jenn
I also had a terrible headache like my head was being crushed. Both times it bled. The first time it bled, I also had vomiting and vertigo and neck pain. The headache was a different kind of headache, too. So when it bled the second time, it reminded me of the 1st time and I knew something bad was going on up there.
I had had a bad bad headache 5 years before my bleed last year (probably my first bleed) with vomiting, but couldn't stand to wait in the ER for the 8 hour wait time, so I went back home and toughed it out and I took a week to recover. Some days I was just lying there in so much pain that the only thing that could get me through it was picturing a small desert island and the sound of the surf. During the last 5 years things got crazy in my life and I started drinking more. In the weeks leading up to this last bleed, I just felt "off". I wasn't sick, but I felt like I was sick. Or coming down with something. I had been getting little headaches behind my left eye (I thought it was from using the computer too much), and my tolerance of alcohol slowly went way down. 1 beer and I couldn't handle any more. I had been to Six Flags the week before and I think that and a lot of stress at that moment in my life, shook something loose up there, maybe I would've been fine had I not rode EVERY roller coaster in the park. Oh and the drinking probably did not help either. But I hope *this* helps!!
Jenn, my wife's AVM was 4 cm and large as our Doctor put it. The Gamma Knife treatment which they shot 30 targets in the size of a shot glass. This month we will get an MRI to see the results. Yes, the smaller the better. Your second bleed how long from the first? And the second one you stated you bled. Yet it was as bad as the first?
Well, you and my wife are in the same boat ans so is your husband and I.
Thanks for resp[onding. Great help
RobinsonClan2011 said:
Sorry that hers can't be removed, mine can't either. They were going to do an embolization but found an aneurysm that's too close and they didn't want to burst it. I had the Gamma knife as well on May 25th so as you know, now we wait and hope that things are better in 6 months...longest 6 months of my life I'm sure.
I do understand why the ER sent me home but they were going to, and wanted to, do an MRI and they decided not to at the last minute, it's just frustrating. I do think that I need to have the seizure, it helped in my diagnosis although it was scary for my husband. This all only happened two months ago so it has happened really fast.
Do you know how big your wife's AVM is? I've heard that there are better chances for smaller AVMs of obliterating it in one shot of radiation. I hope she is feeling well.
Jenn
4cm is large...I was told mine was about 2 1/2cm but he was measuring it at 3cm...kinda in between. So mine is more on the small side. I really don't know if I've had a bleed but I think my seizure might have been the result of one. If not, I'm also thinking I had one while I was in the hospital after my first angiogram. That night I had a headache worse than when I gave birth with no painkillers and it lasted about 1 1/2 hours. I didn't have the same thing when I had my second angio so I'm thinking that might have been it. My husband and I just brushed it off after I was given meds and they helped me some and the nurse acted like it was nothing, but I don't know either way. So I can't answer you for certain if I've even bled once, sorry for going on.
I'm not sure how and where exactly they shot my gamma knife, wish I knew. My scalp is still sore from it almost 3 weeks later so I would like to know. Could be the pin sites too still. I should have my husband get on here and chat with you as I know he's having a hard time with things...if that would be ok with you. We've only known about it for 2 months so he's still coming to terms and trying to figure out how to help me and himself.
Thank you,
Jenn
Andy Lee said:
Jenn, my wife's AVM was 4 cm and large as our Doctor put it. The Gamma Knife treatment which they shot 30 targets in the size of a shot glass. This month we will get an MRI to see the results. Yes, the smaller the better. Your second bleed how long from the first? And the second one you stated you bled. Yet it was as bad as the first?
Well, you and my wife are in the same boat ans so is your husband and I.
Thanks for resp[onding. Great help
RobinsonClan2011 said:Sorry that hers can't be removed, mine can't either. They were going to do an embolization but found an aneurysm that's too close and they didn't want to burst it. I had the Gamma knife as well on May 25th so as you know, now we wait and hope that things are better in 6 months...longest 6 months of my life I'm sure.
I do understand why the ER sent me home but they were going to, and wanted to, do an MRI and they decided not to at the last minute, it's just frustrating. I do think that I need to have the seizure, it helped in my diagnosis although it was scary for my husband. This all only happened two months ago so it has happened really fast.
Do you know how big your wife's AVM is? I've heard that there are better chances for smaller AVMs of obliterating it in one shot of radiation. I hope she is feeling well.
Jenn
Sure that would fine if your husband needs to chat about living with this situation. It's been March 5th since my wife had her event and it has been rough to fair. It seems your doctor did not inform you to the details of your AVM. He should. Our Dr, is well published ,Dr. Najaki at St Joseph Hosp in Phoenix.
This is what my friend Brad did,,all of the above..I couldn't have said it better..
Deb (Sarah's mom) said:
When my 14 year old daughter had a bleed, she had complained of the "worst headache ever" during school, but she was still able to go to volleyball practice. She felt better after pain medication for a few hours, and then out of the blue, started screaming and crying and holding the back of her neck with her hands. She wouldn't/couldn't move her head and she wanted to go to the hospital. We thought she was maybe being a little dramatic and got her to relax. Then she started throwing up. The thing that got us to take her to the hospital was that she didn't remember screaming or vomitting 10 minutes after doing it. She was also very unstable on her feet. We didn't know at the time she had an AVM and had bled (leading to some hydrocephalus, which also maybe caused some of her symptoms). For her, it was the headache. On her pain scales of 1 to 10 with 10 being the worse pain ever, she still rates that night like a 40 because it hurt that bad. But prior to the actual bleed, I don't think she really had symptoms except the really bad headache a few hours prior to the INTENSE pain she had. I guess if we knew she had an AVM prior to the bleed, we would watch for intolerable headache, dizziness, nausea/vomiting, one sided weakness, pupil size difference between the eyes or any kind of other stroke symptoms, short term memory loss, numbness/tingling, etc.
Good luck!!
Deb
My bleed was a long time ago (1975) BUT I still remember and always will. It was an instantaneous "worst headache of my life". Within an hour I began to vomit, but that didn't last long, thank God, because it wasn't helping the headache. In hindsight, I had what they call a 'bruit'....I could hear the blood pumping in my head.
I understand you can have small bleeds and not even know it. Guess mine was big - LOL!