For over 50 years I have been told to stop being clumsy, that I was a "bull in a china shop" and I better start looking left before I walk, and that I had too many accidents, and that I was dumb. All hat tine, I tried to explain what no one understood and what I could not understand myself. There was no visual therapy 50 years ago and nobody knew what an AVM or hemianopia was. Well, it turns out, in a way, that would be like asking a blind person to see. Please read what I read two days ago.
STROKE RELATED SIGHT LOSS: HEMIANOPIA
Hemianopia robs its victims of quality of life. Most people with hemianopia are afraid of leaving the house and entering unfamiliar environments, especially crowded places.They fear tripping, falling or bumping into other people and objects, causing injury and embarrassment. They lose social contact and independence.
Hemianopia arises when there is damage, usually as a result of a stroke or arteriovenous malformation (AVM), in the nerve pathways that connect the eye to the Occipital Cortex or in the cortex itself. The Occipital Cortex is the area of the brain that is responsible for processing visual information provided to it by the eyes and for constructing the seen image. In people with Hemianopia the perceptive problem is, therefore, cognitive rather than optical. The impact of a stroke or AVM upon vision usually results in the same portion of sight being lost in each eye, and a person’s retention of detail is considerably undermined by their gross field loss.
Loss of the entire right or left half of the visual field is called Homonymous Hemianopia. People will have significant problems with reading and being able to ‘track’ between lines of print and in doing close work because any task undertaken will have been performed out of their normal view. People can compensate for their sight loss by making a conscious effort to be aware of the missing areas in their vision either by deliberate scanning or by turning their head so that objects come into view. Unfortunately, because short-term memory is sometimes impaired following a stroke or AVM, some people find that remembering to do this is not easy. Because the underlying problem is cognitive rather than optical it is also common for people to not remember that they even HAVE a field deficit. They may not remember to scan for trip hazards at ground level, e.g., throw rugs and low pieces of furniture, and may not be aware of small thresholds.They are likely to fall through a doorway in neglecting to scan for any object that happens to lie not within their perceived field of view.
I cannot remember I can't see left most of the time. There is no world to the left. I loved reading about this.
Wow Irene! Thank you so much for posting this! I'm like you, there is nothing to the left.
I was compelled by this. While I've known I had the visual deficit, it was nice to put a name to it. Also, knowing that I'm not crazy and that it really is difficult for me to read, was huge.
I also constantly bump in to things and fall too and while it's sometimes humorous, it's good to know there is actually a significant reason for it is so refreshing.
Thanks so much for sharing about Hemianpia, it was very informative.
I was so saddened by the insensitivity you've had to shoulder all these years, apparently you're a very strong person. Even so, here's a (((hug))) for you.
I've read a book awhile back by an AVM survivor, Bill Fallon "Courage to Persevere". He also lost some field of vision and afterwards still went skiing.
Irene, I’ve showed this to my husband and friends. Just being able to give myself a little more validation is wonderful! They can never understand how difficult large crowds are for me.
One of my long-time AVM friends who also copes with Hemianopsia from a massive bleed in his occipital lobe (had AVM surgery 20+ yrs. ago), shared this great video "Intro to Hemianopsia" w/me, so am passing it along. http://www.youtube.com/watch?v=gCa1TZ-qCIw
Thanks so much for this. I had never seen it before. I sent you a friend request, when I just wanted to say thanks. I am not on here much as when I first found this site. It was amazing to me to find it, after about 45+ years. The internet has helped me become aware. Thanks again. We can be friends anyway
Patti Gilstrap said:
Hi Irene,
One of my long-time AVM friends who also copes with Hemianopsia from a massive bleed in his occipital lobe (had AVM surgery 20+ yrs. ago), shared this great video "Intro to Hemianopsia" w/me, so am passing it along. http://www.youtube.com/watch?v=gCa1TZ-qCIw
Sure they would because I could tell them a lot of what happens as you get older. I have a lot of experience with this. Everyone is different, for sure, but I sometimes think I am the oldest survivor of an AVM bleed.
Hi Irene. That poses an interesting question…who is the oldest person on here who experienced a bleed? It may well be you. I saw someone who was 72 years old who just found out he had an unruptured AVM. I am glad you are a survivor!
Irene, I just have to thank you again for posting this! Through this I’ve learned there is a website and it suggests that there may actually be treatments available for hemianopsia. Not one of my gazillions of doctors have ever even mentioned this word to me, let alone suggest I have it. But on hemianopsia.net there is list of symptoms and I have every single one of them! That is just one more reason this website is such an important thing for us. Through others experiences we learn so much!
A doctor a few years ago told me he would not be surprised if there were only a few people still alive 50+ years out from an AVM bleed and surgery. I was 8 when it first bled. That was 1959. Within a few weeks I turned 9 on April 3, and the craniotomy was done on April 10 1959. So, in a few weeks I can have a 52 year anniversary. Amazing. I did not find out until around 1980 what the story was about. I wrote to my old family doctor in New York, who wrote me a letter stating it turned out to be an AVM and not a tumor or cancer as they thought. At the time of the surgery, they thought it was cancer and took a little more brain than they had to just to be safe. There were no scans then that really showed anything. There was a test called a pneumoencephalogram, invented by Walter Dandy, who also was a surgeon at Johns Hopkins in Baltimore. He started doing vascular surgery, Here is a little about him:
Walter Edward Dandy, M.D. (April 6, 1886 – April 19, 1946) was an Americanneurosurgeon and scientist. He is considered one of the founding fathers of neurosurgery, and is credited with numerous neurosurgical discoveries and innovations, including the description of the circulation of cerebrospinal fluid in the brain, surgical treatment of hydrocephalus, the invention of air ventriculography and pneumoencephalography, the description of brain endoscopy, the establishment of the first intensive care unit (Fox 1984, p. 82), and the first clipping of an intracranial aneurysm, which marked the birth of cerebrovascular neurosurgery. During his 40-year medical career, Dandy published five books and more than 160 peer-reviewed articles while conducting a full-time, ground-breaking neurosurgical practice in which he performed during his peak years about 1000 operations per year (Sherman et al. 2006). He was recognized at the time as a remarkably fast and particularly dextrous surgeon. Dandy was associated with the Johns Hopkins University School of Medicine and the Johns Hopkins Hospital his entire medical career. The importance of his numerous contributions to neurosurgery in particular and to medicine in general has increased as the field of neurosurgery has evolved.
All I can think is the neurosurgeon who took care of me studied Dandy's work. My neurosurgeon, a Dr. Sheppard of Long Island, now deceased, did an exploratory brain surgery on me based on the EEG. The results of the pneumoencephalogram were inconclusive. That was a barbaric test and I wish I did not remember it, but I do. They take some spinal fluid out and replace it with air, and watch the air move around the brain on some kind of screen. If there is a blockage, the air stops moving. There was no blockage because it was a bleed, so it did not show anything. The hospital records I had said the diagnosis was an astrocytoma, a cancerous brain tumor. Interesting, huh? I was in a children's ward and smelled Ether constantly because of tonsilectomy patients. Ether was the drug of choice for tonsils being removed. It stinks when the kid would come back to the ward and breath it out. I went home bald, but I went home. We had a big family, and my mother told all of them to not talk about my "problem". Everyone stared at me until my only sister who is a year younger than me said "you are fine, let's go play" Thank heaven for her because she watched out for me and she acted like she was my left side w.here I cannot see. Thanks for writing.
I am glad I helped your understanding of hemianopia. No doctor ever knew about it in my life. After I figured it out, after they told me I "just" lost peripheral vision, I went to a neuro optician who knew all about it. He was a doctor for children with eye tracking problems. I had some visual therapy, but unless you continue to do the lessons, it does not keep helping, and I would forget to do the scanning, etc. I should have had the therapy back in 1959. I was treated as a normal kid, no school ever knew I had the disability, no job either. I hid it as best I could until I was caught by an eye doctor. I was a paralegal for years, even though I almost failed school. I never went to college. I am tough and resilient, possibly because I was treated like the rest of the kids. And my mother, for some reason, told me never to tell people what went on!!!!!!
Irene, I agree, your story is so amazing! How you managed to survive and persevere well no one around you knew you about your condition is astounding! You are tough and resilient indeed!
Hi Irene or can I call you Beans? You are AMAZING!!! Oh and I like your younger sister too!
Irene Carnahan said:
hi Barb:
A doctor a few years ago told me he would not be surprised if there were only a few people still alive 50+ years out from an AVM bleed and surgery. I was 8 when it first bled. That was 1959. Within a few weeks I turned 9 on April 3, and the craniotomy was done on April 10 1959. So, in a few weeks I can have a 52 year anniversary. Amazing. I did not find out until around 1980 what the story was about. I wrote to my old family doctor in New York, who wrote me a letter stating it turned out to be an AVM and not a tumor or cancer as they thought. At the time of the surgery, they thought it was cancer and took a little more brain than they had to just to be safe. There were no scans then that really showed anything. There was a test called a pneumoencephalogram, invented by Walter Dandy, who also was a surgeon at Johns Hopkins in Baltimore. He started doing vascular surgery, Here is a little about him:
Walter Edward Dandy, M.D. (April 6, 1886 – April 19, 1946) was an Americanneurosurgeon and scientist. He is considered one of the founding fathers of neurosurgery, and is credited with numerous neurosurgical discoveries and innovations, including the description of the circulation of cerebrospinal fluid in the brain, surgical treatment of hydrocephalus, the invention of air ventriculography and pneumoencephalography, the description of brain endoscopy, the establishment of the first intensive care unit (Fox 1984, p. 82), and the first clipping of an intracranial aneurysm, which marked the birth of cerebrovascular neurosurgery. During his 40-year medical career, Dandy published five books and more than 160 peer-reviewed articles while conducting a full-time, ground-breaking neurosurgical practice in which he performed during his peak years about 1000 operations per year (Sherman et al. 2006). He was recognized at the time as a remarkably fast and particularly dextrous surgeon. Dandy was associated with the Johns Hopkins University School of Medicine and the Johns Hopkins Hospital his entire medical career. The importance of his numerous contributions to neurosurgery in particular and to medicine in general has increased as the field of neurosurgery has evolved.
All I can think is the neurosurgeon who took care of me studied Dandy's work. My neurosurgeon, a Dr. Sheppard of Long Island, now deceased, did an exploratory brain surgery on me based on the EEG. The results of the pneumoencephalogram were inconclusive. That was a barbaric test and I wish I did not remember it, but I do. They take some spinal fluid out and replace it with air, and watch the air move around the brain on some kind of screen. If there is a blockage, the air stops moving. There was no blockage because it was a bleed, so it did not show anything. The hospital records I had said the diagnosis was an astrocytoma, a cancerous brain tumor. Interesting, huh? I was in a children's ward and smelled Ether constantly because of tonsilectomy patients. Ether was the drug of choice for tonsils being removed. It stinks when the kid would come back to the ward and breath it out. I went home bald, but I went home. We had a big family, and my mother told all of them to not talk about my "problem". Everyone stared at me until my only sister who is a year younger than me said "you are fine, let's go play" Thank heaven for her because she watched out for me and she acted like she was my left side w.here I cannot see. Thanks for writing.
