My daughter's original AVM is totally resolved. We are 3 years post gamma knife. However this past spring she began to experience odd, recurring sensations. It will start with a migraine level headache. Then other symptoms: skin numb (can't tell how hot shower is), tingling feelings her face, when she is eating there no sensation of food in her mouth, and a great deal of difficulty processing what people are saying to her. She says she feels completely outside her body. It lasts a number of days.
The first time it happened it lasted about 4-5 days. We did go to the ER and had an MRI, nothing showed up at all. The second time was 3 months later (Sept) and I decided to pursue with a neurologist. Third time this past week. She has had a new MRI done and a 24 hour EEG. We are waiting for results.
Did some online research and it could be some form of odd migraine or some from of epilepsy?? I just would like to know if others have had anything like this at all. It is a very disorienting phenomenon, especially the processing part. Her AVM was left tempo-parietal (upper gyrus). It was deep and had to be embolized. She continues to experience memory problems, and difficulties in academics (poor test results, reading comprehension etc.) She is a sophomore in college.
I am kind of assuming this is all some left over result from either the AVM or the medical procedure and not much can be done to resolve the problem. Still, it would be nice to hear from others especially if anyone has had similar issues and has found a way to deal with them. Thanks!
A few mos after my treatment I started to have memory problems, sometimes I had problems buttoning my shrit etc. I learnd if I closed my eyes I could over come some of these problems
I just did my gamma knife about 15 days ago, so my symptoms have been there before gamma, but I do have some similiar symptoms with your daugther. I do have numb skin, specially my hands, which worsens everything, since I can’t tell if the numbness is from my hands or other parts of my body. I also lack the sensation of taste, which has been there for a few months and is not getting any better. I also have problems with memory and understanding what others are trying to say to me, although it seems like it’s getting a little better. I think these are symptoms of my AVM, but I also have an aneurysm, so I don’t know. I wish my symptoms would disappear some day. The worst part is not being able to taste what I eat!
Thank you both James and Michael! Really appreciate the feedback. While Katie almost always has some memory and verbal processing issues (perhaps more noticeable because she is a college student) the ‘out of body’ stuff and the numbness occurs when she has these migraines and completely outlasts the pain phase. They also didn’t occur until the last year, more than two years past the avm. Interesting about closing your eyes James – a way around, a new path to the memory perhaps? Michael: she tastes things but doesn’t feel the food in her mouth, doesn’t sense that she is swallowing – not an attractive feeling in terms of appetite however. I will let people know when we hear from the neurologist.
I can’t speak to the symptoms your daughter is having, but I can offer some suggestions about how to get help in college. Our Son had epilepsy, and his seizures were zone-out seizures. To all other people, he would act like a drugged up kid; he might stand up, walk out of class or start mumbling incoherently.
When he was in a state college and changing meds, the seizures were fairly common. He went to the college’s disability office and got all kinds of help–all FREE. All he had to do was walk into the office and they set everything up for him. He could have had more assistance, but below is all he thought he needed.
Because he often had a long recovery time following even a short seizure, he was given tutors that would sit in classes with him, taking notes, and helping him after class if necessary.
He was given a free pass for all his classes if he had a seizure during a test. He could leave, then come take the test later when he was ok.
While he didn’t use stuff other than the tutors/note takers, it did help him with classes/grades.
I urge your daughter the check it out at her school as well.
Memory problems are common for those who have had serious trauma to the brain. Having an AVM or surgery to get rid of one counts as serious trauma. These things leave scars in the brain before (cutting off blood to parts of brain) and afterwards (plugged up artieries) and the scars of surgery. These things change what the brain was going to do in that spot.
It is good to review this with your doctors, and I’m glad to see you working with them on these tests. Review the results in detail.
In my case, the doctors kept saying, “No problem, the AVM is gone”. They meant the AVM was gone, they did not mean the brain was perfect and untouched. There are scars and they cause problems. I’m working on those problems for me now. It’s not easy, but got to be done.
Yes Al, couldn’t agree more. The sad thing is that I am beginning to believe that the embolization and then the gamma knife procedure did more to damage the brain than the bleed itself. But of course they had to repair the bleed. We are going to be doing a number of neuropsych tests: trying to pin down the exact nature of her problems and what kinds of support strategies can be used to work around them. She is fortunate to have been given lots of assistive technology equipment, but in the final analysis if you don’t have a good strategy for holding onto to new memories, school is a problem. Thanks for you response. So important to be in touch with others dealing with this stuff.
Al said:
Memory problems are common for those who have had serious trauma to the brain. Having an AVM or surgery to get rid of one counts as serious trauma. These things leave scars in the brain before (cutting off blood to parts of brain) and afterwards (plugged up artieries) and the scars of surgery. These things change what the brain was going to do in that spot.
It is good to review this with your doctors, and I'm glad to see you working with them on these tests. Review the results in detail.
In my case, the doctors kept saying, "No problem, the AVM is gone". They meant the AVM was gone, they did not mean the brain was perfect and untouched. There are scars and they cause problems. I'm working on those problems for me now. It's not easy, but got to be done.
Ron
Extremely helpful stuff. Katie may be having some kind of mild epilepsy, I know that crossed the doctor’s mind. We have been fortunate to get lots of assistive technology stuff from the state of Maryland, and she has been to the disability office on campus. Until quite recently however she has found it very hard to admit she was having problems – truly, she thought she was stupid. It makes some sense, there you are studying away with everyone else and they sail through the exam and you fail. Only recently did she go to a professor and explain a bit about how hard normal tests (memory driven things) are. He reacted well, and I think she learned that people want to help, they just need to understand the situation. Her school doesn’t have tutors and this is an area that would enormously help. I have no doubts that in the end my daughter will find her path (she wants to work in fashion) but getting there is hard. We need to re-double efforts to let people know that memory isn’t brains, it’s memory.
Ron, KS said:
Hi Diane,
I can't speak to the symptoms your daughter is having, but I can offer some suggestions about how to get help in college. Our Son had epilepsy, and his seizures were zone-out seizures. To all other people, he would act like a drugged up kid; he might stand up, walk out of class or start mumbling incoherently.
When he was in a state college and changing meds, the seizures were fairly common. He went to the college's disability office and got all kinds of help--all FREE. All he had to do was walk into the office and they set everything up for him. He could have had more assistance, but below is all he thought he needed.
Because he often had a long recovery time following even a short seizure, he was given tutors that would sit in classes with him, taking notes, and helping him after class if necessary.
He was given a free pass for all his classes if he had a seizure during a test. He could leave, then come take the test later when he was ok.
While he didn't use stuff other than the tutors/note takers, it did help him with classes/grades.
I urge your daughter the check it out at her school as well.