Hi Pouncing paws :), My AVM didn't show when I had an MRI Ages ago (2008 after I had a random seizure which I didn't have history of - EEG also ) It was found after it bled on Dec 31st 2013, I was told by the docs that my AVM wouldn't have shown up on that type of scan, Only found on a DSA (Type of Angiogram that shows blood flow) The DSA was done 2 days after my AVM removal surgery which happened 7th July and then I had a CT Scan with contrast dye before being discharged 7 days after surgery ! . 1 further Angio scheduled for 1 years time to confirm obliteration :) . Hope you are well, Take care and take it easy always :)
Hi. :) Thank you for your help. I appreciate everybody sharing with me and I hope you're doing really well.
Hi. :) Thank you so much for your comment. You've been through a lot. Bless you and I pray that you have really good news to tell us after your next angio.
Did you have any symptoms?
Hi Pouncing paws again :) , My AVM was small (Well after the initial bleed which could have caused some of it to go away I hear) I had 2 seizures my whole life one in 1998 and one 2007 so very much far apart and suffered headaches sometimes but other than this which I thought was not very out of the normal I had no symptoms as such :) .
Hi. :) I hope you're feeling good. Your replies mean a lot to me. It's good to have this information and not feel like I have nowhere to go with my questions. Bless you.
Welcome!! :) hope all is well. Hopefully this info helps a little. I didnt read every reply but my AVM wasnt detectable by MRI. The Drs did something called an angiogram (w/ contrast) which led them to concur it was an AVM. Also they found it due-to a stroke/rupture. Your Dr. can tell you if its possible to undergo the procedure but they can only be performed seldom:because w/contrast require a decent amount of dye and you have to be sedated (surgery). That's how mine went but that surgery pertains to the brain i'm unsure how it works elsewhere in the body.
Best of luck and i hope the outcome of your situation is favorable :)
SDH
Hi. Thank you for the welcome and for your response. :) It helps me a lot. I hope that you're doing well now and that you never have to go through that again.
I'm not sure if my neurologist is thinking about AVM, so far he's concerned about aneurysm. Is AVM something that most neurologists would know about or is there another type of doctor that you see?
My AVM was quite large and it was detected accidentally with a CT scan. CTs aren't as detailed as an MRI so I would imagine that it could show up in an MRI even without the doctors specifically looking for it.
Hi. :) I really appreciate you replying and I hope that everything is going well with you and that you're in good health.
Paws, how are you holding up? Did you get the test done yet? I had a small AVM in the right occipital lobe at the back of my head. I was a kid, and so told the adults in my family that I had headaches all the time, that I had spots in my eye(s) and that there was something in my head making too much noise. At first no one believed me, but this was a long time ago before MRI. My Nana finally took me to an eye doctor who saw something just looking in my eyes, and sent me to a neurology guy right away. During the next week, before I got to the neuro guy, I had a big seizure, and was in a coma for a week, They believed me then. The noise in my head was called a bruit and it is the sound of the blood rushing in the AVM or something like that. It seemed like the noise went along with my heartbeat. I do know small AVMs bleed a little sooner or a little more often than big ones. Please let me know what happens. Oh, why would this neurosurgeon only look in the Circle of Willis? Maybe because he is thinking only aneurysms. AVM is rare, and some different kinds of doctors still do not know about them. Neurosurgeons would have to know about them, you would think. Because there were no scans in 1960, I had an EEG and barbaric tests not done anymore. It was the EEG that showed an "area of irritation" so the surgeon knew about where to go, but had no idea what he was looking for.
beans
Hi. How are you? :) I hope you're doing well and feeling great. Thank you for sending this comment. It's really helpful for me to have this information. I'm sorry that you went through all of that, especially since you were a kid at the time. Has your AVM gone away? I pray so.
My visual symptoms are a lot worse and I'm very scared. The flashing is very bright and it looks like there's a strobe light going off all the time.
The neurologist said he's only looking in the Circle of Willis because that's where they're taught most problems will be. I think he should be looking in other places as well, but I don't know if he knows about AVMs.
Would you be able to describe the sound you had to me? Did you hear it all the time? The back of my head pulses with my heart beat whenever I'm laying down and sometimes when I'm up. There are times when I can hear it. I never had this happen before all of these symptoms started.
Paws:
I get a CT scan with contrast and an EEG every three years or so. There is no evidence of an AVM, just the EEG shows where it was and that I still have partial occipital seizures, which I am aware of when they occur. They manifest with flashing lights in my right eye, on the right side, where there is good vision. I now take Keppra for them, after many years of taking Dilantin and Tegretol. Those two meds are liver hurters. I also feel better with Keppra. I cannot get any MRA or MRI BECAUSE IN 1959 they put 5 vascular clips in my brain and the metal they are made of is unknown and could be magnetic.
The sound in my head was like a swoosh swoosh, and it was always there as I neared my 9th birthday. I hated it. Look up bruit and you can read what it is. I do know a doctor can put a stethoscope up to your ear, and hear it themselves. At least in my case it was that way. The sound was gone after the craniotomy. My visual symptoms were spots of black where they never were. The occipital lobe is a big part of the visual cortex. My vision was worse after the craniotomy, totally blind both eyes to the left. But they thought I had cancer, and took out more than would be done now. I was told it would return, but it never did. Some people these days have improvements in their vision as time goes by. I had no rehab in 1959. I never learned to scan or look where I was heading. I rode a bike afterwards, but was not allowed to ice skate. Go figure.
When you say your visual symptoms are worse and scary, what are they worse then? Are the vision problems new? Has it been determined something is in the back of your head? Or is the doctor not saying. He, in my opinion, should be looking everywhere, not just the Circle of Willis. Have you ever gotten another opinion? I would not wait around for long for an answer.
I am glad to help you if I can. I do want you to know I am well, and despite all, have been successful in my life. I have a son who is fabulous, who has a new baby girl, 7 months old, and I am now a Grandma.
beans
Hi Paws,
I am 7 months into my journey and have had so many unanswered questions. When I had my bleed last December, the CT and MRI showed nothing other than the bleed. Once the blood had reabsorbed, they did another CT, and it only showed the damage from the bleed but no reason for it. On that CT report, the damage done to the brain from having blood in the brain tissue was called encephalomalacia. That means a softening of the brain tissue that resulted from injury and inflammation. Encephalomalacia is what can happen to premature babies. They can have multiple brain bleeds as a result of being premature and the fragile brain blood vessels. The encephalomalacia from these bleeds is what can cause them to have Cerebral Palsy. It doesn't get better. So, the residual symptoms that I have are from the damage done by the bleeding into the brain tissue. I also had an MRI with contrast a few months afterward as well, but all it showed was "blushing" in the area where the AVM was, so it wasn't conclusive for an AVM either.
The next step for me was a diagnostic angiogram. That is where they found there was a vessel abnormality. They at first called it a DAVF. The next step was to do another deeper angiogram, under general anesthesia, to embolize the vessel. When I woke up, I was told that it was an AVM, and that they didn't have enough leading blood vessel to do the embolization without possibly causing a stroke due to the embolization material back flowing into a good vessel. It is a small AVM, <3cm, and the smaller ones are actually more likely to bleed due to higher pressure and the vessel walls being thinner. It's like putting the same amount of fluid through a straw compared to a garden hose. The pressure will be higher in the straw.
I ended up having 5 radiation treatments done, and now I have to wait at least 2 years to see if it worked. I have been off work since the bleed. I still have residual symptoms from the bleed. Some of them are: left sided weakness, fatigue, irritability, some numbness in the bottom of my left foot, difficulty concentrating, memory issues, dizziness, occasional trouble sleeping, increased heat intolerance, unsteadiness, and I cannot handle stress anymore, The best way that I can explain it is that I now have an exact number of mental and physical "brain coins" to spend every day. If I budget them well, I can get through the day ok, but with fatigue eventually kicking in towards the end of the day. If I use all of them up by noon, then I'm pretty much done for the rest of the day. If I take it very easy for a day or two and save some up, I may have a few extra coins for the next day and can do a little more. If I overdo it and borrow from tomorrow's coins, then I won't have enough to get through tomorrow very well, and I have no choice but to take it easy tomorrow. If I start feeling foggy, dizzy, or very tired, I have to make myself rest, if I keep going past the point of no return, then I actually start having symptoms that I haven't had since the bleed. This has happened a few times when I was working on something and wanted to finish, and I kept pushing, I started having the heart beat noise in my right ear, numbness in my left palm came back, I have the flashing weird light in my left eye, and I was weaker and dizzier than usual. So, I have tried to learn my limits and listen to my body when it starts telling me I'm doing too much.
I was 47 when the bleed happened, but over this last 7 months, I have come to realize that I have had symptoms as long as I can remember. I have always had the bruit, the whooshing sound of my heartbeat, in my right ear, and also headaches, especially when I got overheated, my blood pressure was up, or I was stressed. Sometimes I could hear it when I was quietly lying down, but it was always on the right side where my AVM is. I also always remember having half of my scalp feel numb and tingly or feeling dizzy under the same stressors. I was able to do some sports when I was younger, but I couldn't do anything with lots of running because of the headaches and dizziness. But it was always there, so it was just weirdly normal to me all those years, but now I think it may have been from the AVM, and I didn't even know it. I talked to one of the nurses I worked with, and she worked for years in a neurologist's office, and she said that AVM's can have spasms when under stress and with increased blood pressure, and that can cause neurological symptoms. So, that may explain why my symptoms get worse if I overdo it mentally or physically and why I have had symptoms all my life.
Anyway, I'm sorry this is so long! It just kinda happened! I pray that your journey goes well, and you find your answers. It does help to know that you're not alone. Feel free to contact me if you have any other questions or need to vent!
Shari =o)
Hi. :) I'm sorry that I'm just now writing back to you. I wasn't able to get online for a while, but thank you for replying and I pray that you are well. Blessings to you.
The visual symptoms have been happening for over five months since the onset of everything else. The flashing looks like there is a strobe light going off and it can be very scary for me. I agree that the neurologist should have been looking everywhere, but he's sending me to another neurologist since he says he doesn't know what's wrong. I asked him about AVM, but he said it would have shown in the MRA. How would he have seen an AVM in another place if he didn't look?
Hi. :) Don't be sorry for sharing. I am thankful for your reply and your kind words. It means a whole lot to me and it really helps. I'm sorry that you've gone through all of this and I pray that everything goes very well for you with your treatment and the symptoms that you continue to have. I hope they will get better.
if an MRI or MRA is done of your whole head, and I know nothing about whether they pinpoint an area of your brain or not, it should be possible to see an AVM. That is how a lot of people find out they have an AVM if they have no symptoms. They may be in an accident and get an MRI done; and what is found by a good radiologist is an AVM that has been in their brain since they were born. Since the visual disturbance started at the same time as everything, it would seem to have a lot to do with what may be going on. I am no doctor, but it does not seem to be a coincidence. When are you going to the new guy?
beans