Who of you have or had their avm on one of the temporal lobes?Mine was located on the right temporal lobe and it was 6cm
Hi Miko,mine is on the left temporal lobe,still there,gamma radiation almost three years ago.:)3 cm
Left temporal here! I had mine removed via craniotomy about 5 years ago.
I’m a righty. Mine was right near the surface and a small bit was on the lobe right above the temporal lobe. I am not sure how big it was, but I remember being told that it was bigger then they thought once they opened me up. 4 months post-op.
hi mine is on the right part that affects sight, possibly, after craniotomy which im due to have in 2 weeks time. 6 cm.
affects sight what do you mean?me for example i have homonumous hemianopia from the left side.
Erin said:
hi mine is on the right part that affects sight, possibly, after craniotomy which im due to have in 2 weeks time. 6 cm.
Well when I saw my neurosurgeon yesterday for my pre-op assessment he said (for the first time) there is a risk for me in losing the peripheral vision around both eyes due to where it is. There is a name for it but I can’t remember, it may be what you have mentioned hemianopia, but yesterday was the first time I’d heard of it. It’s only a small risk but it’s there. Mine being on the right affects my left side ‘feeling’ so that could also get worse. Hopefully none of this will happen. I’m guessing you have you had yours removed successfully? How is the hemianopia now and are you able to deal ok with it?
Nikolaos Papadopoulos said:
affects sight what do you mean?me for example i have homonumous hemianopia from the left side.
Erin said:hi mine is on the right part that affects sight, possibly, after craniotomy which im due to have in 2 weeks time. 6 cm.
yes hemianopia is nothing at all for now i don’t think it will affect anything in my life.Nothing more considering side effects
Erin said:
Well when I saw my neurosurgeon yesterday for my pre-op assessment he said (for the first time) there is a risk for me in losing the peripheral vision around both eyes due to where it is. There is a name for it but I can’t remember, it may be what you have mentioned hemianopia, but yesterday was the first time I’d heard of it. It’s only a small risk but it’s there. Mine being on the right affects my left side ‘feeling’ so that could also get worse. Hopefully none of this will happen. I’m guessing you have you had yours removed successfully? How is the hemianopia now and are you able to deal ok with it?
Nikolaos Papadopoulos said:affects sight what do you mean?me for example i have homonumous hemianopia from the left side.
Erin said:hi mine is on the right part that affects sight, possibly, after craniotomy which im due to have in 2 weeks time. 6 cm.
so we the temporal lobes avm’ers don’t have so much side effects?
My daughter’s was right. She has a left-side field cut. After her first craniotomy, she didn’t know a book had a left page. She still trips over objects on the lower left if she’s tired or distracted, otherwise she has adapted pretty well. My daughter has had her original AVM resected as well as a subsequent regrowth on that side.
Your body has an amazing way of adapting – just takes time and patience.
My daughters was on the right, but hers ruptured. 1/3 of her rt temporal lobe was removed
All I know is I have a small AVM in right temporal lobe. I have an appointment to see neurosurgeon in mid October of 2010. Please let me know what you all think on how they will treat it??! Thanks
My son Zach is deep in the right temporal lobe we will found out more here on the 2nd of nov
I am also a righty, small on the right temporal lobe. I am three weeks post cyberknife. Treatment was a piece of cake, first week after was a little rough, each day now I feel better. Still having headaches and new is a bit of short term memory loss. Craniotomy would have been the route but do to other medical condition, cyber or gamma were my only options and I chose cyberknife.
Good luck!!
Hello Nikolaos, my was in the left temporal & posterior frontal lobes. It was 5+cm, bigger than the MRI had shown. After surgery, I had visual problems on right side, but after lots of rehab and therapy, it is now back to normal.
I assure you hemianopia is a very big deal. The people we talk to suggest putting a paper towel or toilet paper tube up to your eyes. That’s roughly what it would be like. My 8-year-old has lost more than 50 percent in each eye. If we can’t find a miraculous improvement, she will never be allowed to drive a car.
Now, obviously hemianopia is not a big deal when it’s life or death. But my daughter trips over things on that side, doesn’t see people or objects on that side, etc.
Just want you to be aware that it’s not a simple side effect.
Nikolaos Papadopoulos said:
yes hemianopia is nothing at all for now i don’t think it will affect anything in my life.Nothing more considering side effects
Erin said:Well when I saw my neurosurgeon yesterday for my pre-op assessment he said (for the first time) there is a risk for me in losing the peripheral vision around both eyes due to where it is. There is a name for it but I can’t remember, it may be what you have mentioned hemianopia, but yesterday was the first time I’d heard of it. It’s only a small risk but it’s there. Mine being on the right affects my left side ‘feeling’ so that could also get worse. Hopefully none of this will happen. I’m guessing you have you had yours removed successfully? How is the hemianopia now and are you able to deal ok with it?
Nikolaos Papadopoulos said:affects sight what do you mean?me for example i have homonumous hemianopia from the left side.
Erin said:hi mine is on the right part that affects sight, possibly, after craniotomy which im due to have in 2 weeks time. 6 cm.
RT temporal, occipital, parietal here…very large. 10x7x3cm 4 embos and a shunt. Suffered severe left side weakness, limp and increased hemianopsia before embos. Still have hemianopsia but have adjusted to it and no longer notice. All left side weakness relieved post embolization. Crainiotomy, and radiation to risky!(paralysis, visual deficits, etc)
Mine was in the right frontal temporal lobe, it was removed 8 years ago at time of my stroke…
I meet with a neurosurgeon oct 20th. I have no idea what the dimensions of my AVM are but according to my neurologist and CTA it is small. So, my question to those who have or had an AVM located in right temporal lobe, if small, do you know what kind of treatment I will be receiving? I am a 26 yr old newlywed with 2 children and am really scared…I have done extensive research on the subject and have read remarkable personal stories of people dealing with similiar issues but have yet to speak with anyone who could maybe give me a little advice on what treatment would do best…etc. Any help or replies would be appreciated! Thanks and God Bless!!
If you don’t mind, what was the other medical condition you have that prevented you from taking the craniotomy route?