Hello everyone. My daughter in law had a ruptured left temporal AVM Feb 2011 that required an emergency craniotomy. Her progress has been miraculous as her only deficit is Wernicke's Aphasia when she is under stress. Last August 2013, she had a seizure for which she is now on Keppra 500mg twice a day. Her CT scans have come back normal, however her recent EEG shows slowing and a potential for increase epileptic seizures. The doctors are not sure what is going on, maybe seizures are being triggered by scar tissue from the surgery. Also, she has bilateral right field vision loss in both eyes. Has anyone experienced this, and if so, what have you done.
Hi Carolyn...I also had a rupture on the AVM on my left temporal lobe 6 years ago. I also have aphasia, vision loss on both eyes and seizures. I also am on Keppra. So we have quite a bit in common. Is your daughter in law a member of this Network? If so, I would be happy to chat with her. The amazing part of this Network is that we are not alone.
Hi Louisa,
thank you so much for sharing your experience. We really felt alone in this whole process. Ruth does not have internet access, but I would love to be able to get the two of you talking. Let me let her know she is not alone in this and and share your experience. How are you doing on the Keppra? Ruth has constant migraines and just is miserable on it.
Hope to chat soon!
Carolyn
Hi, my daughter also had an AVM left temporal and parietal lobe hemmorage with craniotomy. She was mute for months and we are three years out and she can speak sentences, has apraxia and global aphasia. She too is on keppra 500mg two times a day. Some EEG’s have come back normal and some have come back slowing in the left temporal lobe and had spikes in the temporal lobe. We had two EEG’s that were clean and were about to ween off and the last EEG showed slowing in temporal lobe and spikes in the left occipital lobe. She too has bilateral right visual field deficits. We have a lot in common as well. My daughter is now 13. She I has cognitive issues as well. Should be in 7 th grade and is at 4 grade level and has some short term memory issues. I went to get a second opinion from a different neurologist that specializes in seizures in Orlando, Fl. He ordered a 48 hour study to look at what a two day EEG would show and to look at the slowing and spike issues. We have this next week. I want her off of the keppra as the majority of AVM survivors have been able to go off, but if this 48 hour EEG shows a lot of spikes and slowing, we will get the recommendation from this new neurologist. That is what we are evaluating right now.
The spikes have been in two different areas at different times. Her MRI/MRA are good, only showing her third left ventricle is enlarged. Her AVM bleed took out both lobes mentioned above, as it was massive. Her recovery because it was two lobes has been much slower than most that I have read.
Have you had MRI/MRA?
Have you had a 48 hour EEG?
What exactly has your neuro dr said about the slowing?
Did your neuro mention spikes( sometimes called blips) on the EEG?
I would love to compare notes…
You can find me on Facebook as well as Renee Ximanies.
Thank you for,your input…
Hi there, what do your EEG’s show to keep you on keppra?
Very similar to my son's situation. Left temporal lobe. Aphasia, right hemianopsia. He is still receiving treatment (gamma) as it was inoperable. He had several seizures this summer after his cranioplasty. He initially was on Keppra, but is allergic, tried dilantin, did'nt work well for him. Now on valporic acid. No seizures since then. His bleed was Oct 2012.
Please never feel alone again...there are so many AVM'rs here to support you!
If possible, if Ruth has internet access it is a lifesaver. My brother got one for me when I came home and I don't know what I would do without it.
Has for Keppra, I don't get migraines from it...From what we've been through, it would be very difficult to diagnose what is causing her migraines...could it be the craniotomy, the healing process or the Keppra. I still have headackes but really don't know why.
It takes a very long time for a brain to heal..it is not like having a broken leg, etc..Your daughter in law is only 2 years from what happened to her. It has been 6 years for me and I feel I am still healing.
Because of our aphasia, a wonderful girl on this network told me how to type what you want to say on Word, which has spell check..then you can fix what you have spelling incorrectly that way. The Network does not have spell check...so I started using Word, fixed things with Spell Check and then copy and pasted my respond to this Network. It works so well.
If Ruth wants to know anything...this is the place to be! There are several sub-groups that could really help her:
www.avmsurvivors.org/group/avm-with-seizures-epilepsy
www.avmsurvivors.org/group/aphasia-friends
There a quite a few other sub-groups you may want to look into...Just click on the Groups and there is a while list of them.
Wishing you the best.
Hi Carolyn, my boyfriend age 52 had a left frontal lobe bleed and emergency craniotomy to remove the AVM just this past Dec 2013. He also has Aphasia and is on the keppra twice a day 500 mg. we were thinking about asking the doctor to lower the dose being the it was the AVM that caused the seizures and now that it is gone, is it needed? I do know that scar tissue can cause seizure activity and that the EEG is the way to see if that is happening. Also the right dose of seizure medication is a tricky thing. Sometimes too much can cause a seizure as well. It may be a good idea to keep your daughter on the meds a little longer or adjust them to calm the brain.
My best to you and your daughter.
Deb
Is one of her doctors an epileptologist? Like Renee X did, you will want to see a neurologist who specializes in seizures: an epileptologist. The neurosurgeon and general neurologists were unable to assess and treat my husband properly, and we didn't know this until we finally stumbled across an epileptologist. If you google the Epilepsy Foundation, you'll see a find-a-doc feature on their site.
I had an avm Rupture in the fall of 2005, i had had surgery to correct the avm. about 6 months after my surgery i had my first seizure... and they have since decided that my epilepsy is cause by my scar tissue. They said i could have another surgery to try and repair the scar tissue in hopes that a clean scar would cause less brain activity disturbance... however i'm hesitant to have another surgery since my seizures are controlled by Keppra... keppra may cause me some mood problems... however, i've decided to put up with the moods as long as my seizures are under control...
I too have a near total left hemianopsia. Both eyes seems to be affected. This is following the craniotomy that saved my life. It is the biggest challenge I face and cannot drive. Have you found anything to help the hemianopsia? Please reply!
I have scar tissue from the hemorrhages. I have seizures stemming from that area. They are controlled pretty well by Lamicatal and Vimpat.
Hi my son's is a right side vision cut (left occipitol. He can't drive either-- hard for a 23 yr old. From my reading there isn't much to help. Some people use prism lenses to help with adapting. My Opthomologist said that the VRT therapy doesn't really work-- expensive and time intensive with very little result. He has mostly just tried to adapt, which he has done well. He also has difficulty reading, and has used the "Read-Right" program for hemianopsia out of the UK. It's free, and seems to have helped his reading speed some-- not dramatically, but steadily.
Hi Carolyn,
I am not to sure about the after effects, but my little brother is about to go through the same thing and is requiring an emergency craniotomy. The doctors said he would have peripheral vision loss but would reduce the amount of seizure activity and relieve some of the pressure on the AVM, It sounded like those were pretty common side effects to the surgery.
If I might be able to ask you how was your daughter in law immediately after surgery? My mom has taken the news pretty hard about my brother and I am trying to be somewhat prepared when its all done.
My daughter in law is truly a miracle as her symptoms started at 0800, son called EMS, to local hospital and CT scan showed a devastating bleed. She was flown out and 1/4 way there birds hit the chopper and the made an emergency landing. 2nd chopper came in for transport. It was almost 8 hrs from the initial rupture to the OR. Ruth did amazingly well during the surgery, was extubated the following morning and discharged to rehab on the 4th day. With all the replies to My Discussion here, I know we were blessed with her outcome. Her deficit after the surgery was short term memory loss, Wernicke's Aphasis, and some cognitive issues. I am sending prayers your way and hope your little brother does well. Keep me posted.