Bleeds

Hi everyone,

I’m new to this forum and newly diagnosed with avm of the brain. I’ve only just been diagnosed with this and am just finding out/researching it so everything is all new to me but I’ve read through a few stories and have found help and hope from them.

I’m at the stage where I’ve been diagnosed as having a large avm but am waiting to see the neurosurgeon to see exactly what my avm means, ie how/if it can be fixed.

My question may sound odd but after reading some descriptions of bleeds I’m a little confused…How do you know you’re having a bleed?

Obviously, I know it is often blatantly obvious but some people have said they think they had a bleed one time etc. I’m asking because my headaches have been constant and severe of late (accompsnied by whooshing pulse in ear) and I’m worried this may lead to, or even be a bleed. Basically, do you always know when you’re having one?
Thanks.

Hopefully this provides a little inisght from mayoclinic.com in their AVM topic. I like their AVM info since it’s well done and well written for ‘real people’ yet still pretty thorough.

From Mayoclinc.com:

When bleeding into the brain occurs, signs and symptoms can be similar to a stroke and may include:

Sudden, severe headache
Weakness or numbness
Vision loss
Difficulty speaking
Inability to understand others
Severe unsteadiness

Signs and symptoms of a brain AVM include:

Seizures
A whooshing sound (bruit) that can be heard on examination of the skull with a stethoscope
Pulsing noise in the head (pulsatile tinnitus)
Headache
Progressive weakness or numbness

I wish you the best!

Hello Erin,

useful info. that Sharyn sent you. Take action asap. I didn’t have the chance to ask and research this topic, unfortunately, I didn’t have no sympmtoms, had the hemmorage which lead to stroke then comma, as you all know it caused much damage, don’t mean to scare you, with the help of Avm team and family, you will be fine.

Welcome to the site. It has been very helpful to us. When my daughter had a bleed, she had a very sudden severe headache, followed by about 12 hours of persistent vomiting. Those were pretty much her only symptoms, but the headache and vomiting would come and go over the course of the week, before they finally did the CT scan and found the bleed.

Many prayers, as you begin this journey. There are lots of people here to help!

Susan

From what I’ve read, it is possible to have had a bleed without even any serious noticeable effects…

For me, I was the same as Gerardo. One minute I’m in my room after just coming home from school, the next I’m running downstairs yelling feeling like my head’s about to explode, and then passing out. I don’t remember any other pains or feelings prior to that…

But yes I’d still say it’s very possible that those symptoms could be or lead to one.

Hope all goes well.

Thanks all for your replies, I’ve got the bad headache and stiff neck etc all the time but no sickness as yet. Fingers crossed I won’t. Just been told I’m probably going to have to wait 3 and a half weeks for my first appointment with the neurosurgeon which isn’t great. Thanks again.

Thanks so muchfor this Sharyn, very useful.

Sharyn Laney said:

Hopefully this provides a little inisght from mayoclinic.com in their AVM topic. I like their AVM info since it’s well done and well written for ‘real people’ yet still pretty thorough.

From Mayoclinc.com:

When bleeding into the brain occurs, signs and symptoms can be similar to a stroke and may include:

Sudden, severe headache
Weakness or numbness
Vision loss
Difficulty speaking
Inability to understand others
Severe unsteadiness

Signs and symptoms of a brain AVM include:

Seizures
A whooshing sound (bruit) that can be heard on examination of the skull with a stethoscope
Pulsing noise in the head (pulsatile tinnitus)
Headache
Progressive weakness or numbness

I wish you the best!

Erin, I’m new to this site as well… my symptoms are exact to yours… I have had 3 ct scans and so far there is no signs of a bleed. I’m scheduled to have an angiogram on Jan 4th, then I’ll meet with the neurosurgeon to schedule my surgery. My headaches are becoming much more severe from time to time but if it helps any like I said there have been no signs at all of a bleed… it’s my understanding that the pain would be VERY severe (intolerable) and you would definately know it and get immediate medical attention should that happen… good luck to you… and I’m so thankful I found this website. Rosemary

Symptoms can be all of the above or none of the above I slept through my first bleed. The first hospital I whent to at noon the next day sent me home told me I had atransient ischemic attack a small stroke . That was in 1999 I never had another bleed I was finally diagnose with an AVM after a seizures in aug of 2008. I think there a lot of people out there with AVMs that may never be diagnosed or have a identifiable symptom. I had severe headachs for years but they had nothing to do with my AVM I had a food allergy (processed peanut butter) stoped eating peanut butter they whent away . The first thing you did right you found a wonderful site with wonderful people just hang in there and they will get you throught it. They did me !

Thanks for your input folks, I appreciate it. Good luck and best wishes to you Rosemary with your angiogram on 4th. Just think, at least you’ll be a step further.

Rosemary Weston-Brown said:

Erin, I’m new to this site as well… my symptoms are exact to yours… I have had 3 ct scans and so far there is no signs of a bleed. I’m scheduled to have an angiogram on Jan 4th, then I’ll meet with the neurosurgeon to schedule my surgery. My headaches are becoming much more severe from time to time but if it helps any like I said there have been no signs at all of a bleed… it’s my understanding that the pain would be VERY severe (intolerable) and you would definately know it and get immediate medical attention should that happen… good luck to you… and I’m so thankful I found this website. Rosemary

Good question. I had no idea I had an AVM and no idea it was bleeding. I thought Ihad food poisoning. I had a headache that was throbbing and heard the whooshing sound in my head. I also started vomiting, but it was not normal vomiting. It was more like projectile vomiting. Normally, when u vomit, your body kind of resists, but this was more like the vomit was shooting out of my mouth. There was no gagging. I was driving with my kids in the car and continued driving. Eventually the pain got so bad, I knew it had to be something serious, so I went to my parents house, where the pain continued to get more and more severe. I started feeling very hot like I ha a fever but my dad was tellin me I didn’t feel hot. I felt like my body was on fire and jumped into an ice cold bath. I continued vomiting in the bath and was unconscious about 5 minutes later justabout the same time the EMTs arrived. I had a very massive bleed (the break in the blood vessel was over 2 inches), which I am assuming has very different symptoms than a small bleed. The doctor said I could have been having numerous small bleeds before this and was unaware. I had many headaches when I was pregnant with my son. He said they were probably minor bleeds.

Thanks for that Mary kate. Have you got it sorted now and did you have surgery to do so? I’ve been told I have a Grade 4 AVM which hasn’t bled as yet but is at high risk of doing so so I need to have embolizations and surgery. I worry about bleeds because of this but also because I have constant fairly severe headaches, although my neurosurgeon said I would have known if it had bled.

mary kate said:

Good question. I had no idea I had an AVM and no idea it was bleeding. I thought Ihad food poisoning. I had a headache that was throbbing and heard the whooshing sound in my head. I also started vomiting, but it was not normal vomiting. It was more like projectile vomiting. Normally, when u vomit, your body kind of resists, but this was more like the vomit was shooting out of my mouth. There was no gagging. I was driving with my kids in the car and continued driving. Eventually the pain got so bad, I knew it had to be something serious, so I went to my parents house, where the pain continued to get more and more severe. I started feeling very hot like I ha a fever but my dad was tellin me I didn’t feel hot. I felt like my body was on fire and jumped into an ice cold bath. I continued vomiting in the bath and was unconscious about 5 minutes later justabout the same time the EMTs arrived. I had a very massive bleed (the break in the blood vessel was over 2 inches), which I am assuming has very different symptoms than a small bleed. The doctor said I could have been having numerous small bleeds before this and was unaware. I had many headaches when I was pregnant with my son. He said they were probably minor bleeds.

I doubt you can know that you had a bleed unless you have an MRI, unfortunately or if you go unconcious -

Well I woke up 2 days later in the hospital…i had passed out and they called an ambulance. They did a craniotomy. The angiogram showed that they go it all. but the neurosurgeon said because of swelling after the surgery it might not be correct soi Igotta get another angio in a year to make sure I am completely cured. Good luck with everything!

Erin said:

Thanks for that Mary kate. Have you got it sorted now and did you have surgery to do so? I’ve been told I have a Grade 4 AVM which hasn’t bled as yet but is at high risk of doing so so I need to have embolizations and surgery. I worry about bleeds because of this but also because I have constant fairly severe headaches, although my neurosurgeon said I would have known if it had bled.


mary kate said:
Good question. I had no idea I had an AVM and no idea it was bleeding. I thought Ihad food poisoning. I had a headache that was throbbing and heard the whooshing sound in my head. I also started vomiting, but it was not normal vomiting. It was more like projectile vomiting. Normally, when u vomit, your body kind of resists, but this was more like the vomit was shooting out of my mouth. There was no gagging. I was driving with my kids in the car and continued driving. Eventually the pain got so bad, I knew it had to be something serious, so I went to my parents house, where the pain continued to get more and more severe. I started feeling very hot like I ha a fever but my dad was tellin me I didn’t feel hot. I felt like my body was on fire and jumped into an ice cold bath. I continued vomiting in the bath and was unconscious about 5 minutes later justabout the same time the EMTs arrived. I had a very massive bleed (the break in the blood vessel was over 2 inches), which I am assuming has very different symptoms than a small bleed. The doctor said I could have been having numerous small bleeds before this and was unaware. I had many headaches when I was pregnant with my son. He said they were probably minor bleeds.

Yea…everything is fine now. I was rushed to the hospital. They operated and removed the AVm…they think they got it all, but I gotta go for another angio in a year so they can double check. Because of swelling after the surgery, they can’t be 100% sure its all gone. Good luck with yours. I think if its a large bleed like mine, it might not be obvious at first, but after a littlewhile the pain gets so bad, you can’t even imagine without having gone through it.

Erin said:

Thanks for that Mary kate. Have you got it sorted now and did you have surgery to do so? I’ve been told I have a Grade 4 AVM which hasn’t bled as yet but is at high risk of doing so so I need to have embolizations and surgery. I worry about bleeds because of this but also because I have constant fairly severe headaches, although my neurosurgeon said I would have known if it had bled.

mary kate said:
Good question. I had no idea I had an AVM and no idea it was bleeding. I thought Ihad food poisoning. I had a headache that was throbbing and heard the whooshing sound in my head. I also started vomiting, but it was not normal vomiting. It was more like projectile vomiting. Normally, when u vomit, your body kind of resists, but this was more like the vomit was shooting out of my mouth. There was no gagging. I was driving with my kids in the car and continued driving. Eventually the pain got so bad, I knew it had to be something serious, so I went to my parents house, where the pain continued to get more and more severe. I started feeling very hot like I ha a fever but my dad was tellin me I didn’t feel hot. I felt like my body was on fire and jumped into an ice cold bath. I continued vomiting in the bath and was unconscious about 5 minutes later justabout the same time the EMTs arrived. I had a very massive bleed (the break in the blood vessel was over 2 inches), which I am assuming has very different symptoms than a small bleed. The doctor said I could have been having numerous small bleeds before this and was unaware. I had many headaches when I was pregnant with my son. He said they were probably minor bleeds.

I am just a couple of months ahead of you into my AVM adventure. I was diagnosed in June of last year. I saw several Dr.s before I finally found one that agreed that he was going to be able to remove it. I was told by 4 others that it was inoperable. Also, I always have to wait a couple or more weeks for appointments. It drives me nuts. It just seems that they are not as concerned as you are. Really frustrating. I have heard so many different opinions on bleeds and affects. I just read and ask questions and you kind of get your own beliefs. Anyway, i don’t know if this helped, but sometimes it’s good just to know that someone else out there is going through the same thing you are. Take care, and best of luck through all of this.
Peace
Dave

Erin said:

Thanks all for your replies, I’ve got the bad headache and stiff neck etc all the time but no sickness as yet. Fingers crossed I won’t. Just been told I’m probably going to have to wait 3 and a half weeks for my first appointment with the neurosurgeon which isn’t great. Thanks again.