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AVM Survivors Network

My story so far-Updated


#1

Hi all, I am 26 years old and live in Manchester UK. I have recently found out that I have an avm on my right occipital lobe.
So it started 6 years ago with a migraine and I have had migraines ever since but I could go 6 months without one and then have a few over a few weeks and then they would be gone again. However the last 2 years have been different and I have had either a headache or a migraine every single day, obviously this isn’t good so I went to see my doctor to explain what was going on. He sent me for an mri scan on my brain and this is when he found my avm. The avm was discovered in September and I have my first appointment with the Nuero surgery team tomorrow. I have received a letter from the team stating they don’t believe it is the avm causing the headaches/migraines, I just wondered if anybody else with an occipital lobe avm had headaches and migraines (headache with very blurred vision) before a rupture. I am very confused and have been left in the dark really. I would appreciate any help at all or experiences. Thank you
UPDATE
After my first nuero appointment today I have been told that I have staining around the avm which indicates I have had a bleed in the past. Also I have to go back within the next 6 weeks for an angiogram. This will be my first angiogram… are they as bad as they sound? Thanks again


#2

Yes before my rupture I would have sharp headaches in the back right side of my head and my vision will get blurry and somewhat distorted; I just wrote it off due to stress at work but after it ruptured I realized my brain was trying to tell something and I wasn’t listening.


#3

Thank you for your response @Mike5, I knew something was not right. I always have pain behind my right eye with blurred vision in both eyes and then just before my vision comes back normal I have blurred vision just in the bottom left corner of my left eye. I have my first appointment with the neurosurgery team tomorrow so hopefully I will get some answers. It is very worrying to hear of all these ruptures. This website has been a god send for me.


#4

My AVM was in a spot called the brain wernickes area. It’s between temporal, parietal, and some of the occipital lobe. I did have headaches before my AVM rupture happened but figured it was just me growing up at the time. As for what was damaged from the bleed most of it was short term memory loss and right eye peripheral vision. My left eye is my dominant eye now because of the bleed. Some times put a contact lens In my right eye. But it’s not that bad.


#5

Thankyou for your response @John_O, luckily I have not suffered a bleed. Mine was found due to headaches and I am hoping to have this fixed before it causes any major problems but I feel very scared about the whole thing. Something going on in your brain is a very scary thought, especially when it is quite rare. My own doctor couldn’t really tell me any more than I already knew through reading on google. Are you cured now John? Thanks again, it’s great to have people on here that have their own experiences


#6

I am cured from the seizures I used to have after the bleed but I’m stuck with medication forever. The damage done after the bleed and surgeries left an open gap so the brain you could say goes into a panic because it’s missing a piece. I’ve gone over 10 years without having a seizure but am still stuck with medication. Last seizure I had was from catching viral meningitis. That was more of a black out than a seizure.


#7

Oh wow @John_O, this sounds very scary! I am glad you no longer have the seizures. I guess I am very lucky that I have never had any seizures or ruptures so I think my avm was found in time and hopefully easily treated. I am so worried. There is not enough information on avms


#8

hi charlotte. What other issues do you have? Do you get pins and needles, in your wrists etc?

Are they suggesting Gamma Knife?


#9

Hi @Rich2, thanks for your reply. I sometimes do get pins and needles in my fingers with the migraine type headaches but not every time. Also when I get the blurred vision it only usually lasts for 30-40 minutes. I have my first appointment today with the neurosurgery team so hopefully I will find out more


#10

Charlotte

The blurring and the pins & needles could be linked to the migraines, as “aura” but since you have an AVM, I’d say you’re right to suspect the AVM inducing something.

I think most people consider the angiogram to be unpleasant rather than anything to frighten you. Basically, they insert a cannula into your femoral artery in your groin (with a bit of anaesthetic, too) then feed in a very fine catheter (tube) which the interventional radiologist can steer through the arteries in your body and reach the place he or she is interested in.

Then they will inject a little “contrast material” which shows up on X ray and take a number of pictures. As the fluid is injected, it can have effects on you (e.g. hot flush; dizzy; need to wee) as it briefly affects the piece of brain being looked at.

Finally, the catheter is removed and the doctor presses down on the wound to help it heal.

You then go back to a ward to lie still for 2-4 hours to let the wound heal before going home. You’ll need taking to and from as you’ll need to avoid driving during the heal. The worst bit is having the pressure applied post scan but might also be lying still for a long time!

Hope that helps,

Richard


#11

Hi CharlotteLouise, thank you for sharing your story! It is very frightening and confusing when you just found that you have an avm. My avm was found on an MRI made because of strange headaches, in may this year. I also had migraine like headaches, and sharp shorter pains, all on the right side of my head, where my avm is (on the temporal lobe). The vascular neurologist as well as the neurosurgeon I spoke won’t confirm that the headaches come from the avm. I find this very strange, because on information websites I read that headache can be one of the symptoms. I went a few times to an Osteopath which helped a little bit with tension headaches, a least for a few days.
Anyway, I am a little bit further down the road and also very, very grateful that mine did not rupture and that it can be treated with relatively low risk. Hopefully this will be the case for you too! Let me know if you have any questions.
Warm greetings, Karin


#12

Thankyou for your reply @DickD, I do feel very nervous for the angiogram. I think I work myself up for no reason sometimes.


#13

Ooh wow @Kare Thankyou for your reply! We have the exact same symptoms except my headache is always behind my right eye and my avm is on my right occipital lobe so the pain isn’t actually at the site of the avm, however I am absolutely convinced they are linked! I don’t exaggerate when I say that every single day without fail I take painkillers for a headache through most of the day! My neurosurgeon told me yesterday that the migraine type symptoms (blurred vision) could be linked to the avm but he didn’t think that the headaches were! However my eyes go blurry and then 5 minutes later the pain kicks in behind my eye… so how can only one of these be linked?? I too have read that headaches are a symptom of avm so I’m not sure why the nuerosurgeons don’t believe this? I am so so grateful to find somebody else experiencing the same as me (not that I am glad you have it) but now I feel like I’m really not going mad!
Which treatment are you going with? Or has that not been decided yet?
Thank you again for taking the time to reply to me


#14

Hey Charlotte! My name is Paul and I live in Virginia. I’m sorry for the trouble you’re having. As an AVM survivor myself, I know how difficult this can be. In reading your posts, you mentioned it was affecting on your occipital lobe. I thought it interesting because I have had multiple AVM removed/treated from my brain. The last one I had caused me to lose vision in my periphery and my right eye. I wonder if the doctors have given you any prognosis with regard to visual field loss? I suppose I would caution the doctors to watch the AVM closely as it likely will cause damage to the brain and as such, possibly cause field loss. The good news however is that you’ve caught it so the doctors are aware of the condition and presence of it. I pray you have a safe and wonderful time as you journey on.

Grace and peace,

paul


#15

Hi @Paul_McMonagle, thank you for your reply. I went to see my neurosurgeon on Wednesday and I did tell him all about the blurred vision which I thought were migraines, I get blurred vision all over and just before the blurriness goes I am left just blurry on my left eye outer bottom corner. My neurosurgeon does not think my headaches are related to the avm but he believes the blurred vision is… which is strange as they come together! I do believe the headaches are from the avm. They are all day every single day without fail.
Did you get your vision back? And was the avm on your occipital lobe? Was it a rupture or treatment that caused the vision loss? Sorry for all of my questions I’m still trying to get used to this.
Thanks again


#16

Not a problem for the questions. Any question I’m able to answer I’ll provide. I did not get my vision back and it has gotten worse. I went 15 years with no visual change post bleed however. Then something “triggered” and I began losing vision. It started in 2016, I was driving home from the grocery store and noticed I wasn’t able to see very much out of my right eye. Then about 3-4 months later, I lost vision completely in the right eye. And as the years have progressed, I lose peripheral vision in both eyes, as well as vision in my right. It was not related to an AVM on the occipital lobe however. It apparently was AVM in my brain that bled onto my occipital region I think. I did have a third bleed in 2010 that I believe caused the degradation of the visual field. The doctors weren’t exactly sure and I of course just can’t see like I could. It is frustrating that the doctors’ reaction is “huh” and a referral to another specialist. I’ve seen a regular doc who referred to a ophthalmologist. Then the ophthalmologist referred me to a neurologist. The neurologist then referred me to a neuroophthamologist. All these doctors had their own copay so needless to say I was somewhat frustrated to hear “yeah there’s nothing that can be done.” :frowning: But, it is what it is and as a Christian, I believe “The LORD gave and the LORD has taken away. Blessed be the name of the LORD.” (Job 1:21, NASB) If He can use me better in this state that with full sight, so be it, right? Hope your condition improves or at the very least the doctors are able to find the cause. Blessings!


#17

Ooh wow @Paul_McMonagle! It really is so frustrating. It is great to speak to other people with similar problems and I can reassure myself that I am actually not going crazy. I’m so sorry to hear that your vision didn’t come back and it sounds like you have been passed backwards and forwards. My neurosurgeon told me that I have had a bleed before as I have staining around my avm on my mri scan so I am more likely to have another bleed. It’s so worrying


#18

The doctors and treatment team I have to believe are doing their best though. Granted there are certain exceptions, but as a whole, they are trying to do their best. Funny thing is, you gotta define your terms. If the doctors were going to guarantee health, they’d all be out of a job! We all are going to die. I just figure those of us with AVM get the added bonus of knowing possibly what will be the end. So in a twisted way, its sort of like a bonus?

In all seriousness though, it’s much better to know what will be your end rather than be blindsided by a cancer diagnosis or upended from some form of melanoma right? :slight_smile: As such, I’ve determined I am not going to live in spite of my diagnosis. I am going to live because of my Savior and share the good news of Him until He takes me home. Not trying to be preachy, but He saved me and wants others to come to Him as well. Call me crazy, call me hopeless, but don’t call me done until I’m home!


#19

Hi CharlotteLouise, no you are not crazy! Must confess I have thought that as well, even this week when again a doctor told me my headaches are not caused by the avm. There are probably many reasons why they can’t be sure about the origin of headaches and so will not confirm. Maybe your headache is caused by muscle tension which might be caused by the blurring of your eye en the tension that gives, so not directly caused by avm but more indirectly related? Just thinking out loud. I also have headaches daily, but try not to take too many painkillers as they paradoxically can cause headaches from medication overuse. I take paracetamol a few times a week. So I focus on rest, and relaxation through yoga, meditation and walking. But they have huge impact on my functioning because I can’t do my job anymore as I am used to (requires lot of cognitive energy) working on 50% since last week.

Yes fortunately I have treatment options, spoke to a neurosurgeon who has operated more avm’s, mine is on the surface. But I will talk to the radiologist soon as well to hear what she has to say about radiation.
Oh and I had an angiogram, it is unpleasant but for me not painful at all. It took me a day afterwards to recover fully. You will manage!
-Karin


#20

Hi @Kare, some days I have normal headaches (always on my right side) and other days I have what I thought were migraines (pain on my right side with blurred vision), if I always got headache after the blurred vision I’d think maybe it was my vision that was causing the headaches but some days I have the headaches without the blurred vision so I have absolutely no explanation and I was secretly hoping that these headaches were linked to my avm so when I have treatment and hopefully cure my avm I would stop with these headaches/migraines too. I too often think about the effects all of the painkillers are having on me, it can’t be good for me but my headaches actually interfere with my every day life and I can’t get by without pain relief. They also make me feel very grumpy and fed up. I do suffer from being tired all the time too but I’m not sure whether all this is linked to the avm.
Do you have a preferred treatment or are you still undecided?
How long does it take to perform the angiogram and what information do they get from the angiogram that they tell you?