Avm's - occipital lobe

Hi All, thanks for taking the time to read this discussion…
Just wondered if you have an AVM in the occipital lobe would you let me know :-
how old you are?
where you are from?
what size your AVM is?
what symptoms you have?
what treatment have you had?

Thanks and take care to you all.

Susan

I just did a search for you…
http://www.avmsurvivors.org/main/search/search?q=occipital+lobe

Hi Susan,

Nadine from Australia, 39 :slight_smile:

I have just been diagnosed with an AVM in my left occipital lobe, I couldn’t tell you what size as I my brain managed to fail me at my follow up appointment and I didn’t ask. I haven’t had any significant symptoms other than years of suffering from migraines (since I was approx 10y old) and 2 seizures. I am still waiting for treatment options unfortunately.

Cheers and take care :slight_smile:

Nadine.

Hi Susan, and welcome. My AVM was in my right occipital/parietal lobes. I’m not sure what size it was. I had a major bleed and embolizations and crani to treat it. I didn’t know I had an AVM before my bleed but the only symptoms I ever had were headaches. The bleed left me with a left visual field cut, which is common for occipital lobe bleeds. I hope that helps.

Hey, Susan. I am a 55 year old female from Indiana, in the US. My AVM is in the right occipital and temporal lobes, measuring 2x3x3.5 cm. (Doesn’t look that big to me but the doctors say it is rather large.) I bled 35 years ago but wasn’t diagnosed as AVM at the time (1975) Symptoms returned in 1997 but were few and far between and very mild. at first they were attributed to scar tissue from the bleed. Symptoms escalated in 2010 with a possible small bleed in Nov 2009. Diagnosed Jan, 2011. Symptoms include being off-balance to the right (all the time), exaggerated startle response (frequently, has actually improved), tremors and tingling (called seizures, few and far between thank God)
Around age 55 according to my docs, risk for bleed goes down due to calcification. Mine shows signs of calcifying and as I have no health insurance I have chosen annual CTA to monitor growth/shrinkage. If I were in my 20’s I might have opted for the embos and crani. I’ve been told my risk at my age for a bleed is only 1-3%. As william says I’ll take the 97-99% chance that it WON’T happen.

Hey Susan,
I am 26yrs old. I’m from NYC, my avm is about 3.5-4 cm
My symptoms are constant headaches, chronic fatigue, blurred vision…sometimes see flashing lights.
I 'm haven’t had treatment yet…I just had my 3rd opinion appointment…I’m planning to have tx done in feb of next yr

Hi Susan,
I’m now 40 but my AVM was discovered at 39 (past March). I live in Massachusetts. My AVM was medium sized. I had a sub-archnoid hemorrhage on March 24th. The weeks prior to that I had a stiff neck but thought I had pulled something. About a week before I was jumping on the trampoline with my son and my head started to bang, so I stopped jumping and it went away, not thinking anything of it. On the 24th at the gym, after running 5 miles, I started jumping rope and bang! Nothing like I had ever felt before. I had a craniotomy on May 11th and it was removed. I am now cured with no deficiencies… life is good…
Sue Harris

hi susan. im 31 and from new jersey. i was diagnosed with avm in jan 2005 in my right occipital lobe. it was 4mm and i had an embolization/ craniotomy which removed avm completely in 2/05. i have a visual field cut in my lower left peripheral vision but it’s manageable. one day i had the worst headache of my life and lost part of my vision during it for about 30 mins. went to the dr a couple days later and he ordered mri which is how i found it.

Susan,
My daughter Erin is 19 and was diagnosed with an avm in her right occipical lobe measuring 5 cm. in June of this year. She had constent headaches, a stiff neck and of balance some. her Dr. thought it was migranes but ordered an mri to be safe. Thank God! She has had 1 embolization and is scheduled for her 2nd one on Aug. 10th. During her first surgery the Dr, found a 2nd avm very near the first. She handled the surgery very well and her only side effects at this point is lose of hair at the site of the avm. She continues to have headaches but her dr. said this is normal until the avm is totally obliterated. She is planning on going back to college at the end of Aug. and continueing life as normal as possible. Hope this is helpfull. DOnt be afraid to ask as many questions as you can think of. to your drs. and on this site. Knowledge is key and support is everything. Good Luck and we are sending pryers your way
Lisa & Erin

Hi Susan, My daughter was 6 when her left occipital lobe avm bled. She is now just about 15 and is doing very well. Please see our page for all the details… :0)

Hi Susan,

Yes, I have an unruptured AVM in my left occipital lobe. I’m 51, California, Drs say small-ish, Right feild vision seisures, ringing in my right ear, MRI, Angiogram. I have an appointment today for pre-screening with a neurosurgeon at UCLA.

Hi

My AVM bled in 1959 when I was 9 years old and was in the right occipital lobe. had symptoms of spots in my vision, and a sound in my ears like a heartbeat, which I now know is called a bruit. I had headaches and then a big seizure and coma for 4 days. and my vision in both eyes was severely affected. I did drive but had my license revoked for vision in 2002. I should not have driven, as I hit things (no people) with the car. I now wonder how many close calls I had and never knew about them. I run into people walking especially at the grocery store. After the craniotomy in 1959, no one talked about it, no schools knew, and I went to gym and got hit in the face with all sorts of sports balls because I have not much depth perception. I also hid my vision as much as possible until I was around 50, when I did a bunch of research and found out I had had an AVM, not a blood clot or tumor. I am not sure if it extended into the parietal lobe, but I have some of results others have when the AVM is located in both lobes. I do know it was a small AVM - a little over 1 cm. But the smaller ones tend to bleed more than larger ones, while larger AVMs are serious for other reasons. There were no scans then, and I must have had a great doctor who knew what was happening from the EEG and other horrible tests. Those tests are not done anymore as far as I know. I am here and I consider myself very lucky. Other results are optical seizures (swirls and flashes of light on the good side of my right eye), confusion when in new places - called spatial disorder, memory problems, and I also have OCD (which got better as I grew up.) I have ADD and was depressed a lot. I hate crowded places, and tend towards social anxiety. Let me know if you have more questions.

beans

Hi Susan, I’m 58, had a massive right occipital hemorrhage 23 yrs ago. I’m in the Tampa area. My AVM had a double nidus, 3 cm and 2cm, both resected successfully but nothing left of that lobe. I also have a left occipital Venous Angioma. Naturally a homonymous visual field cut resulted from the surgery and I’m still not used to it. Number visualization is impossible but verified with a functional MRI. Formed and unformed visual hallucinations were another gift of surgery. Headaches were and still are a huge problem but mostly stemming from the VA.
Good luck to you…Mike

Susan,
My name is Lisa and we live in Rochester NY
My husband Rick had his AVM and bleed out in the occipital lobe. He is 50 years old, his symptoms on that day 4/17/2011 were massive headache, he has suffered from migraines since he was a boy and so we thought it was a migraine, weird eyesight, he complained of “funny eyes” meaning his vision was effected, blocked or fuzzy. Terrible pain in his neck and I knew this is different from a migraine and we need to get to the hospital. They saved his life at the hospital, he had a drain put in to relieve pressure on his brain. We spent 4 weeks in the hospital, Rick was in a coma for 2 weeks and then he had embolization surgery done on May 10th. He spent 3 weeks in a brain injury rehab and is still in outpatient rehab. I wish we knew Rick had an AVM before he had a bleed out but it did not happen that way. I am so grateful to Strong Memorial Hospital for the care we received and also Unity at St Mary’s Brain Injury Rehab program. Rick is still having short term memory issues, loss of eyesight, and lack of insight. I must say he is recovering at a fast pace and amazing his therapists! We are teaching him to read again! He had no recognition of the alphebet just weeks ago, but now is reading at a level 1-3! I hope this information helps you
God Bless
Lisa

Hi Nadine, Thanks for replying to my discussion. My AVM is in the left occipital lobe also and is 3 cm. I have been plagued with migraines since I was a child which included vision problems also. About 10 years ago I was admitted to hospital with severe pains in my head and weakness down my left side. I had a CT scan as they thought that I may have had a stroke but their diagnosis was migraines !!! Since then I have suffered badly with migraines and headaches but also extreme fatigue which I was then diagnosed with ME, then came the neck and spinal pain and they diagnosed me as having fibromyalgia. Last summer I had very bad twitching in my right arm which a neurologist said that he didn’t feel it was anything serious. Then the pain in my nec and back got so severe that I asked my dr to see a orthapaedic consultant who organised for me to have a full spinal MRI. This is where my AVM was picked up. I am awaiting to see a neruoradiologist for treatment of my AVM with embolisation initially. I hope you are well and in good spirits. Take Care Susan



Nadine S. said:

Hi Susan,

Nadine from Australia, 39 :slight_smile:

I have just been diagnosed with an AVM in my left occipital lobe, I couldn’t tell you what size as I my brain managed to fail me at my follow up appointment and I didn’t ask. I haven’t had any significant symptoms other than years of suffering from migraines (since I was approx 10y old) and 2 seizures. I am still waiting for treatment options unfortunately.

Cheers and take care :slight_smile:

Nadine.

Hi Trish, Thanks for your reply. How many embolisations did you have? I currently have lost part of my peripheral vision in both my eyes and I am awaiting embolisation treatment followed by gamma knife surgery. What were your symptoms after the embolisation? Take care and I wish you well. Susan



Trish said:

Hi Susan, and welcome. My AVM was in my right occipital/parietal lobes. I’m not sure what size it was. I had a major bleed and embolizations and crani to treat it. I didn’t know I had an AVM before my bleed but the only symptoms I ever had were headaches. The bleed left me with a left visual field cut, which is common for occipital lobe bleeds. I hope that helps.

Hi Karen, thanks for taking the time to respond to my discussion. I am lucky that my AVM hasn’t bled. It was found incidentally on an Mri scan which I was getting due to spinal pain. My neuro surgeon has organised for me to get an EEG done as he thinks I have been having focal seizures and I have also been having alot of twitching. I wish you well. Take care Susan



Karen W said:

Hey, Susan. I am a 55 year old female from Indiana, in the US. My AVM is in the right occipital and temporal lobes, measuring 2x3x3.5 cm. (Doesn’t look that big to me but the doctors say it is rather large.) I bled 35 years ago but wasn’t diagnosed as AVM at the time (1975) Symptoms returned in 1997 but were few and far between and very mild. at first they were attributed to scar tissue from the bleed. Symptoms escalated in 2010 with a possible small bleed in Nov 2009. Diagnosed Jan, 2011. Symptoms include being off-balance to the right (all the time), exaggerated startle response (frequently, has actually improved), tremors and tingling (called seizures, few and far between thank God)
Around age 55 according to my docs, risk for bleed goes down due to calcification. Mine shows signs of calcifying and as I have no health insurance I have chosen annual CTA to monitor growth/shrinkage. If I were in my 20’s I might have opted for the embos and crani. I’ve been told my risk at my age for a bleed is only 1-3%. As william says I’ll take the 97-99% chance that it WON’T happen.

Hi Nay, Thansk for taking the time for replying to my discussion. I’m 35 and have a 9 year old son. My AVM is 3 cm and like you I have migraines, suffer from chronic fatigue have blurred vision with black floaters and flashing lights before I whopper of a headache. I am currently awaiting treatment also but they have said that I will need a number of embolisations followed by gamma knife surgery. Wishing you well. Susan



Nay said:

Hey Susan,
I am 26yrs old. I’m from NYC, my avm is about 3.5-4 cm
My symptoms are constant headaches, chronic fatigue, blurred vision…sometimes see flashing lights.
I 'm haven’t had treatment yet…I just had my 3rd opinion appointment…I’m planning to have tx done in feb of next yr

Hi Susan … I just had my AVM removed on July 12, 2011.
I am 50 years old.
I am from Seattle, Washington. Born and raised in Seattle, Washington.
I seem to remember them saying it was around 2.2 cm or there abouts.
I started out with headaches … the diagnosis was cluster headaches. Then, about 3 years ago, I stepped off a boat after whale watching for 4 hours and had 3 months of vertigo. I always felt “something wasn’t right” in my head. I eventually wound up in a Rheumotologist office, where by chance he order a willis MRI and the aneurysm was found. In May, 2011 they attempted to embolization, was unable to do it due to “torturous veins”. Due to other issues, they had planned to follow it up with a craniotomy the following day and weren’t able to. The embolization attempt really brought on many symptoms: dizziness, nausea, headache, shooting pains, neck ache, equilibrium problems, fatigue, hot sweats and flashes, sensitivity to loud noises, etc. On July 12, 2011, I had the avm (aneurysm) removed successfully by Dr. Liliam Sekhar. I was very very well taken care of and would recommend Dr. Sekhar and Harborview Medical Center to all in Washington State. Please take care Susan. Best of luck!

Laura B:o)

7 year old female from NY. AVM is approx 2cm. AVM was diagnosed following disorientation and seizure. All functioning and visual fields are within normal limits. Eyes become dry after reading,school, etc. Treatments of angiogram with embolization,now possible gamma knife.