So I have been struggling. My focus is way off. I cant multi task at all (which makes my job tuff). I have a lot of trouble with my words. I will be in the middle of a sentence and I come to a complete stop. I hear the word in my head but I can’t find it to say out loud. This has been getting worse. My concentration is so bad which again makes my job almost impossible. I have now developed a twitch on my face. So frustration. I am headed to neuro Aug 1, but from reading everyones posts doesn't look like I will get anywhere. Not enough research on the memory and concentration thing. So what happens when my job is in jeopardy because my performance is getting iffy due to my issues. I keep trying to put it out of my head every time something happens. Like, "oh that was just a onetime thing". Well it is more and more and I cant keep ignoring it. I take 0 medication or any therapy. Please, if anyone can tell me I am not crazy and this is because of my avm.
I just posted a question this morning pretty much the same as yours. I only have a problem with forgeting things and trouble getting my thoughts together. It really bothers me and I feel like everyone is looking at me all weird like. I get all blotchy on my neck which is even more embarrasing. I feel like my job performance is suffering.I have been doing the same job for over 9 years now and have hardley ever made a mistake. Now it seems like everytime I turn around I am messing something up. So frustrating. I worry about the same thing. I work in a blood donation center and it terrifies me that I might make a mistake that may cost a patient their lives.
Have you had a bleed? I haven't.
Jill, I have the same issues you are having. However, I had a brain bleed and I'm not sure if the radiation you had causes the same problems. You definately need to tell your neuro doctor on August 1sst about what is going on. Perhaps you need meds or therapy, ask him when you see him. You certainly are not crazy! If you need any more information, I just asked you to be my Friend and I certainly will help you any way I can! Louisa
I have not had a bleed. Just had Gamma Knife last March 2012. It really does drive me crazy. I keep thinking it will go away but it just seems to get worse. I also have been doing my job for 7 years and never had an issue before. Thank you for your reply. Not that I want someone to go through what I am going through but it is nice to know I am not crazy
Jill, the wonderful thing about this Network is that we make friends who have the same issues and can help you understand. You no longer are alone and certainly not crazy!
Hi Jill. You are not crazy at all. You like many on this website are going through some quite deep issues and that alone will divert your concentration. You are human who is dealing with human feelings.
That said, I am sure that having an AVM does have some impact on concentration and memory loss.
I have done some strange things myself, like open the kitchen drawer and can't remember why I have opened it???? Going into rooms and then ask myself why have I gone into this room???
When reading, I have read a page and then have to re-read it as I have lost the thread of the story.
I don't know if this has anything to do with the AVM or with me being preoccupied with the thoughts of having an AVM and its that which is all I can think about.
You really have to speak to a neurosurgeon/neurologist to discuss this.
I know, I know that a lot of these guys are very good at "fudging" questions like these. I don't know if they actually know the answers or just can't be bothered to talk or investigate the emotional elements of having an AVM, but rather look at the mechanics of the ailment.
When meeting with my neurologist, he must have thought I was a right pain as if I didn't get the answer to my questions in the way I understand them, I just asked it again and again and again. I did have a few "eyes to heaven" moments. A that point I did have to remind him that this ailment is happening to me and therefore I need some answers to my understandable questions.
They soon back off when you assert yourself.
I hope this has helped somewhat and take care of yourself.
Thank you all so much. I look forward to talking with all if you. When I come on the site I just cry because it is such a relief to talk with people who get it. My husband is great but he for sure does not get it. I did not realize, after my diagnosis, I would think about it all the time like I do.
You are NOT crasy, because I have the same thing. Go figure on this tho....I wobble like a drunk when I walk, stutter, stop in the middle of a sentence, fall over. Yet today (after much prodding from my other band members) I went to my rehearsal studio. I got behind my kit (12 piece double bass Pearl kit) and rocked the house!!?? The bassist set out a recorder and recorded a couple of songs and played them back with a "click track". I was dead on with the timing, rolls and everything???
The band told me that since I starting to have seizures, my timing has gotten as good as ever.
EXPLAIN THAT TO ME?????
PS. If you want to check out my band www.rayerecords.com and click on Holes in the Road.
You are not crazy Jill. I have moments when I am talking that my recollection of names, objects, subjects etc is taking longer than normal and I have a small pregnant pause, until the words eventually get to my mouth.
This is milliseconds but enough for you to see there is a difference.
Like you I take no medication or therapy and feel I would benefit from something.
I started doing psychometric on-line testing just to see where my memory or response time are.
These I have found to be slower than normal, however it is getting better by the day.
My Neurosurgeon told me last week that after the op, it will take around 3 - 4 months before things start getting back to normal and a year when you will think the AVM episode is history.
Time is a healer, and unfortunately things take time.
The doctors I have spoken with says my symptoms can't be related. I have not had the Gamma yet.
Hello Lisa,
Wow. I totally have some of the same symptoms but am not currently working but did notice when I was how difficult and frustrating that they did interfer with my proficiency. I also had a severe blow to my left front lobe and have some permanant brain damage from that...so I just chalked it up to that and getting older but know that I know I have an avm on the right frontal lobe it does seem like it is worse. I have not had any bleeding or ruptures and I have not had any treatment yet, which I strongly believe adds to the symptoms. I mean the frontal lobe is about emotions and one's personality which I believe can be changed by many things including stress pressure, avm etc. t is my understanding that the frontal lobes and any abnormality therein would be EXACTLY these sort of issues. I am amazed that your doctors are not either aware or want to discuss them with you. I am so sorry for that. One of my docs who is still a resident, explained it to me very well and talked about how being amberdexterous could cause deficeits from the right side to show up as if on the left frontal lobe and visa versa. And they are still leaarning more.
SORRY such a long reply, but I was also wondering how you are today and what if anything has changed for you in regard to treatment etc, I wish you well
Thanks for your reply. Knowing that I'm not the only one with these symptoms makes me feel somewhat better. But yes, the Doctor A UT Southwest that I spoke with and his Nurse told me that my symptoms could not be linked to the AVM medically. I have not had the Gamma as of yet. Life seems to get in the way of taking the time to travel, time off work, expense, older parent, grandchildren, etc. Honestly, after I read about the process with the Halo, which I have not had a consult on the Gamma process yet, it scared the crap out of me. I will update as I go along and hope to get this taken care of before the end of the year. Please keep me updated on yourself. Again, thanks for reply.
God’s Speed
To Lisa and Houston, I too am Lisa and I have every symptom you both have ever complained of and I was also told that some could not be related to AVM. This is so frustrating. Working is very difficult, I feel stupid. Was wondering, Lisa, if you have done radiation yet? Barrow in Phoenix did online consult for me and said possibility of staged radiation. Will consider this if nobody wants to help me on the East coast. Was told I would probably not get disability even though Drs say to apply.
I had the Gamma Knife on 11/20 in Dallas at UT Southwestern. My AVM is 5cm. They could never tell me symptoms were related. I understand it will take a long time for this to work, but I am praying the healing process will start now. Good Luck, let us know what you decide to do.
Hi Lisa
I do feel for you. I have the exact same problem.
Have you actually had your AVM removed?
I can't remember if I had this problem before I had mine removed or not. I don't think so, or people were just patient.
If you have had it removed, I know my short term memory was shot for some time. I would be in mid-sentence and then the next thing to come out of mouth was blank..... A complete Brain fade. I would forget a persons name, or place, or word, all of which I used every single day.
It was a bit embarrassing as some people used to finish my sentences off for me, like they do with someone who has a stammer.
Its a bit better now, but I still have to odd day or so that Brain fade sets in. It drives my Wife around the twist, as I keep saying, "thingy" "you know" "something" anything in fact to try and complete the sentence.
For me, it happens most often when I am asked about something I am considering. I will be thinking about something, and then when asked, the names fly out my grasp. I feel for you, don't let yourself get too frustrated though as there is no reward at the end of that thought process.