Do you have visual symptoms? Did they improve after treatment, get worse, or stay the same?
I had spots in my eyes pre craniotomy. They kept getting worse. I also had a bruit (a sound in my head). after craniotomy, I ended up with Homonymous hemianopsia and it never changed after that
beans
My husband has an occipital AVM and just had his first embolisation at Barrow Institute in Phoenix - got out of the hospital today. He has homonymous hemianopsia, but was not aware of this until earlier this week after our first visit to Barrow. He is 46 and blamed a lot of his vision problems on aging. He had a thorough eye exam less than 2 years ago, specifically because of the migraines. I do not think he had this defect at that time since the eye doctor did not catch any of it.
We were told that his vision could improve with time or with vision therapy or that he can at least learn methods to compensate. He was told to see a neuro-optometrist when we return home. We are new to the AVM world and it is all a little overwhelming right now.
Hi everyone!
I had my occipital avm embolized two weeks ago and it was shut completely, everything went very well. But i’m left with right quadrantanopsia. It is not excactly the right upper quadrant which i dont see but there is an unformed spot where the vision is blurry and i cant detect small movements. It is very hard to tell has my vision improved during these two weeks or is my brain getting used to this blind spot. First week after the embolization i had also somekind of rotating black objects and prisms at the right extremity of my vision. But those guys are gone now, maybe the medicine also messed up my head. Doctors say that my vision should come back at least in few months as the swelling decreases in my brain!! Cant wait for that moment :)) best of all to everyone!
Hi JFran,
I was wondering if you'd share your experience with me about the Barrow's clinic. I am flying out there next week to meet with Dr. Spetzler. When you went out there had Dr. Spetzler already looked at you husbands MRI and Angiogram images and recommended a treatment course or was Dr. Spetzler's first evaluation of your husbands images when you got there. You and your husband are in my thoughts.
I have homonymous hemianopsia on the left. My AVM was removed via craniotomy on September 25, 2013, and the vision hasn't really changed any. My neuro-opthalmologist is Dr. Nancy Newman at Emory, and she was not very optimistic about it getting any better, this far out from the initial bleed, which was in July. I have adapted pretty well, and I am very grateful that I can read. It takes effort, moving eyes and head from side to side, but I would be lost if I couldn't read. Main problem is I can't drive, and my husband has to take me everywhere. We live out in the country and there's no public transportation. I have lost my independence, and that is hard. I will see Dr. Newman again in April for a final disposition, but I'm trying to get used to the idea that I will never drive again.
Christi
I have been living with left hh for 54 years. I had a bleed and craniotomy in 1959. My vision never improved, but I learned to adapt as best I could. My husband and I built a house in the country and were so happy there. But he got sick with heart diseases and died at age 47. I was stuck in the country by myself with no transportation for too long, I moved to Florida because I can get around here, and hated the part when I could not drive and was alone.
beans
Hi dancermom. Visual disturbance was the primary reason that I requested an MRI. I have been having some symptoms for a very long time.
As a teenager I had severe problems with bright light. I had to walk around with dark sunglasses a lot but it was not a constant. One day I might be fine and another day I would not be able to drive because my eyes would close against the light no matter how hard I tried to keep them open.
Then at about 43 I began to have some normal changes in my 20/20 vision. I ended up with bifocals because I had problems with distance as well as seeing up close. It was seriously whiny about wearing my glasses. Having been a 20/20 vision person I assumed that it was just harder for me to feel like my glasses were working than it might be someone who had glasses most of their live.
Sometimes the glasses worked an other times it felt like everything was blurry with or without the glasses. I tried contacts but YUCK, no better and I hated them. Since that time I have repeatedly told my doctor and my eye doctor that my vision is just not right. I began to think I had to be running a high blood sugar and maybe that was the reason my vision sucked but my blood sugars have been ok. I'm a prediabetic but if I eat correctly I don't normally have any problem.
I tried a number of things but no matter what sometimes it just didn't matter what glasses I wore, I just couldn't see. For me, the problems were the worst when I first woke up and after reading for a while or doing work on the computer. Then I couldn't see worth a darn.
So anyway, I asked for the MRI, this time thinking that because I am also having so much difficulty with weakness, severe dizzy spells, unsteady on my feet at times, and the vision, perhaps I had either M.S. or another medical problems I have that has caused me to black out and hit my head, I could have some actual brain damage.
So when I got a call from my doctor a few hours after the MRI, with obvious anxiety on the other end of the phone from my doctors office, I really could hardly process what they were telling me. I'm not sure I have, even now.
I’ve always wondered if other people who have occipital avm have Similar visual episodes as I do. Ever since childhood I would have episode of bright , rapidly flashing colorful geometric lights. These would appear for a few minutes to half an hour. And in my left fov. As I got older severe headaches would usually accompany them, then the headaches became extremely intense and I then had a seizure, that s when I was diagnosed.
I was Diagnosed with occipital avm, treated , developed epilepsy, I have a visual field deficit. But I still get the flashes, and to a less degree the headaches too nowadays. Seems to start in my blind spot and spread out. And they happen often as well. They are disturbing, and sometimes even make me feel a bit ill. The seizures I have start from the visual episodes also.
Does anyone else get this type of phenomenon ?
And to answer the question, I would say the visual symptoms changed with treatment to become less intense but years later more frequent, I’m referring to the flashes. My visual field changed for the worse … and I have a more noticeable deficit now. The radiation surgery damaged the tissues in that area. The surgeon warned that traditional surgery would damage the vision anyhow, had I had that done.
Hi Josh.
I have symtomes like you. Before they find my avm, my dr called it magraine with aura. But now they say it comes from the avm. The painattacks starts with the vision on the right side sort of going back and forth, blinking. hard to explain the feeling. And I feel “blind” in my right visionfield. After a few minutes I have so much pain that pills dont help. Its so painful that I cant lie still, cant move, cant breath, and I hyperventilate.
My neurosergian said an operation will leave me with this “vision” costantly, and he couldnt say if the painattacks will stop. So he wont operate. A bleed will also leave me with this vision, so he would rather wait to oprate after a bleed instead. So I have to live this painattacks, and also I have chronic pain in my head every day.
I asked my neurosergion about proton beams, but he wasnt shore. Ill get the awnser in february. We dont have proton beams in Norway, so hopefully I get a trip to Boston, cross my fingers:p My avm is in my left occipital lobe and its about 7-8 cm.
So, I understand what you are going through. I hope you are coping well, but i know its hard.
Hege:)
Hege , I’m sorry to hear you are struggling to this very day. I was also mis- diagnosed as a teen with migraine. Right before I was Diagnosed and treated my headaches were terrible also, so bad I would just lie on the ground clutching my head, felt like my head was caving in. And with flashing lights in most of my left fov. The pains were, still are focused in the area exactly where the avm is located, then radiates out to the whole head.
since being treated with radiation and embolizations I still have headaches and visual symptoms. But the headaches are much less severe, occasionally I’ll get a bad one still. .
I know you’ve got quite alot to deal with. With the vision and headaches. I just hope you find the care you need and get treated! You really need to get with the right doctors .
It’s nice to hear from someone that knows what im going through, doesnt happen every day:p my doctor mis-diagnosed me when i was about 7 years old, whitout sending me for an mri scan. When i was 21 i asked him about the mri, but he said it was no point, it wouldnt help with the migraine anyway. Two years later a different dr finally sent me for an mri. 6 months later i was embolized. Sadly the embo didnt help, I belive its because of the size.
I am now 28 and they still havent found a medication that reduces the pain. In Norway they are veery careful about strong meds, that could cause an addiction. Witch is really annoying. They really dont understand how painful it is.
any suggestion for pain meds by the way?
So I hope they send me to Boston for the proton beams, then ill get to see a little bit of america too:)
That’s too bad they the embolizations didn’t help. Do they think the risk of bleeding had been reduced?
I imagine that at 28 you are very tired of dealing with this avm now for so long, I’m sad to hear that you haven’t found a better solution. .
As far as pain meds go, I usually bounce between excederin, Aleve, and ibuprofen. . I have hydrocodone but find I don’t usually need it. And I do fear overuse of that type of med. Of course my head aches are what I consider mild nagging , occasionally becoming moderate painful. .
The regular meds usually do the trick. But before I was treated none of them could really even touch the pain one bit.
Good question, about the risk of bleed has been reduced! I dont know, I really have to ask my neurosergion:p
And yes, im very tired, but luckally i have 2 beautiful boys and my boyfriend, that makes it bearable:)
Glad you have great family support!
Yeah the docs should be able to give you an idea at least.you would think . But, I don’t know. .
I had a loss of peripheral vision in my right eye which has nearly claimed all vision in the eye and the inner of both my eyes are blind. Mine never improved, my peripheral in the right eye got worse but the other bits of vision loss have stayed the same
Yea that makes things difficult, just not fun. I’m dealing with similar issues.