your dovtor will suggest yuo the best treatment according to exact place-size etc.My suggestion though is embo
Kimberly Montoya said:
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!!
Kimberly, The other medical condition that I have is a mechanical heart valve. I had a severe leaking mitral valve that was replaced and now I need to take blood thinners for the rest of my life. The risk of my valve causing blood clots was very high, so craniotomy was not a choice.
Kimberly Montoya said:
If you don’t mind, what was the other medical condition you have that prevented you from taking the craniotomy route?
mine was in my left temporal lobe. not sure about the size. my side effects were short term memory, peripheral vision, and speech, but all minor problems.
Mine was on the right temporal/parietal region. My craniotomy was in late April, and my side effects include depth perception problems, memory loss, and balance problems. The depth perception problem is the worst because I have a tendency to spill my milk or run into things. I can’t drive. But hey, the AVM is gone and I’m alive, so I won’t complain.
I had my AVM on the right temporal and had two gamma knife surgeries in 2000 and 2006. It was not until after the second one that the problems started to arise.
I have Hemianopsia including a quarter vision loss in the bottom left of both eyes. I also have problems with depth perception because of this. I also occassionally see double when I look off in the distance or am tired. I also run into things (not as much as I used to though)
I also seem to have balance problems and a weakness on my left side. I also found a name for this which is hemiparesis.
I also feel as though I have memory and concentration problems.
Left Posterior Temporal Lobe - 3 X 8 cm. I had a brain bleed on 12/23/07. Treated with Proton Beam Radiation. Was told my AVM was gone after 2 years from my treatment. Best wishes for you!
Good luck with angio this week. My daughter's also was in her right temporal lobe. But hers hemorrhaged. A scheduled craniotomy is a much better option than the emergent one.
Dawn R said:
Mine is in my right temporal lobe and is 4 1/2 cm. Doctor said craniotomy is my only option. Scheduled for first angio Jan. 12th.
Mine was in the right temporal lobe and I had a hemorrhage. I had a crainiotomy in May 2010. Doing well now with the exception of short term memory loss and some fatigue and headaches which are getting better over time.
Hello mine is on the left and I have had an embolization in 06 and Gamma knife in 07. I had some speech problems as the scar tissue was healing the AVM. But I haven’t had any problems since Feb 10. It’s now 3cm
"The temporal lobes are involved in the primary organization of sensory input (Read, 1981). Individuals with temporal lobes lesions have difficulty placing words or pictures into categories.
Language can be effected by temporal lobe damage. Left temporal lesions disturb recognition of words. Right temporal damage can cause a loss of inhibition of talking.
The temporal lobes are highly associated with memory skills. Left temporal lesions result in impaired memory for verbal material. Right side lesions result in recall of non-verbal material, such as music and drawings."
I had my AVM cut out 21 years ago. Back then, they just did the operation. Once the AVM was gone, the doctor's washed their hands and said they were done with me. It's just been recently that doctors and websites like this have provided information on AVM and temporal lobes. This got me going to go back to doctors to check on what had happened to the way the brain works.
I've been to a neuropsychiatrist who tested me to show what damage had been done and what the results were. He explained temporal lobe function and problems due to AVM surgery in much more detail. It was a little shocking. At first, It was like the emperor with no clothes. Suddenly, one day I realized that I am not normal and things don't work right in my brain anymore. That was not a pleasant time. Now, it is beginning to help by knowing what's wrong it becomes easier to figure out how to do things.
I was very happy I got some testing done to find out what changes had occurred inside my brain and the way it thinks.
Al this is super.My neurologist told me that that the brain especially in my age of 25 (avm rapture since 21 and obliterated at 22) so brain has great adaptability at this age so can function the right temporal lobe i lost through other systems-parts
Ninibeth Ramirez said:
Thank you very much Al for the information. I knew my brain had a big hemorrhage on my left temporal lobe but did not know what it meant. In this support group I learned a lot and now with the information you have provided help me understand better. I feel much identified with all of this. Thank you very much…
Ninibeth
Al said:
I pulled this from Jennifer Giovean AVMsurvivor a while ago.
"The temporal lobes are involved in the primary organization of sensory input (Read, 1981). Individuals with temporal lobes lesions have difficulty placing words or pictures into categories.
Language can be effected by temporal lobe damage. Left temporal lesions disturb recognition of words. Right temporal damage can cause a loss of inhibition of talking.
The temporal lobes are highly associated with memory skills. Left temporal lesions result in impaired memory for verbal material. Right side lesions result in recall of non-verbal material, such as music and drawings."
I had my AVM cut out 21 years ago. Back then, they just did the operation. Once the AVM was gone, the doctor's washed their hands and said they were done with me. It's just been recently that doctors and websites like this have provided information on AVM and temporal lobes. This got me going to go back to doctors to check on what had happened to the way the brain works.
I've been to a neuropsychiatrist who tested me to show what damage had been done and what the results were. He explained temporal lobe function and problems due to AVM surgery in much more detail. It was a little shocking. At first, It was like the emperor with no clothes. Suddenly, one day I realized that I am not normal and things don't work right in my brain anymore. That was not a pleasant time. Now, it is beginning to help by knowing what's wrong it becomes easier to figure out how to do things.
I was very happy I got some testing done to find out what changes had occurred inside my brain and the way it thinks.