You can do it Darren. I had my test done about 3 weeks after my crani which was 3 weeks after my bleed. It was done early in the morning, which helped but I won't lie...I was tough but important!!
Ok update on today,
I have a cognitive test on friday , still not sure what that entails , I have got an appointment with a new neurologist that specialises in meds to hopfully sort them out once and for all , still non the wiser on the mri tried calling the hospital today but there all still on bank holiday until tomorrow. my neuro rehab chap seems to think I may have some brain damage caused by the seizures and I have to go for an EEG to investigate that further and to find out if i am actually having some "erratic brain activity" that he said would point that out. Ive told him today I wish that there was some leaflet or more information made available to people like us that have these rare things and that more information should be given at the time of diagnoses to help people like us understand what is actually happening to us , Ive told him about this site and said " all the neuro people should use this as a point of refferance as its not just me with these issues" and thats about it for today anyway. x
Darrin,
Decades ago, after 2 strokes during 7 brain surgeries, I lost EVERYTHING, and I was the biggest bawler for MONTHS and MONTHS. RECOVERY TAKES TIME, and while you are going thru it, try to SEARCH AND FOCUS on any big, or even small, positives in your recovery. THAT really helped ME to get thru it.
Your wife? In my eyes, she does not seen worth it for you. If she does not stick with you thru 'good times and BAD times', soon, you should look for someone better, who has a bigger heart! They are out there. Before my trauma, I had a very serious relationship for 3 ½ years, and I thought we were a match made in Heaven. He also left me after the strokes/surgeries. It took me about 8 years later, and I found someone else, finally, who I thought he was sent from Above to me! We have been married for over 10 years, and he has made me SO happy. I hope someday soon, you can find someone who can be a TRUE love for you!
Lisa
Lisa, you always make me smile. Good for you for continuing to be so supportive of the other members and I am so happy that you are appreciative of Vinny! Yay for true love! Oh, you might appreciate this for one of my anthems is a country song that I feel describes my appreciation of my husband for it has the words ... God gave me you.
thank you lisa,
when I read this I cried it was beutiful to read that you found that special someone who understands you and loves you for being you.
it just goes to show that in this big world there are still many people out there that do actually care about others and there feelings.
thank you lisa for this msg and your support x
if its the song I just listened to susan its beautiful x
Just an other quick update , Never got chance to do my cognitive test on friday as just woke up friday morning and was emotionally low and all over the place when my neuro rehab turned up, so they put test off now until wednesday.
Also dont know if anyone else has had this but since my change in pills to keppra I have had a stutter appear where I have the words in my head but cant get them to come out properly it seems to be since the dose increase to twice daily now. is this normal or has it effected anyone else , it is frustrating and im finding it tiring to have a conversation with someone at the moment. does it wear off after a while?
x x
Hey Darren and thanks for the comment. The song is sung by Blake Shelton and one time after this AVM crap happened I told my husband oh I like that song so he bought it on Itunes for his IPOD. Sweet huh? Darren, I'm praying for you.
thank you susan that was the one I listened to very beautiful :-)and thank you for your prayers and support x
Your not alone. Its so sad to read there are ones like yourself suffering. My son was 23 when he attempted suicide. It ripped our heart out that he felt in so much despair. He said he felt different. He couldn't explain in words but he knew something was not right. Mark was diagnosed at 18 with a left temporal AVM. What made it all so difficult was that even the hospital, although they knew his condition did not support him. Mark had suffered a bleed but it took weeks before it was detected although we repeatedly told the hospital what we thought that was happening.
Its good that you have turned to the site to share your fears. You need to remember that your body as been through the most unbelievable trauma that so many will never come close to and it needs time to repair. Its all still very sudden. The brain is an amazing organ and can repair. You've survived. You will also find that some hospitals hold regular gatherings of patients with conditions like AVM. I know that Q E Birmingham used to, whether they still do but there are such groups. But you know that you can share your frustrations here too.
Darren,
YES, it IS quite shocking dealing with an AVM, especially in the beginning. AT LEAST THERE IS THIS SITE/GROUP FOR YOU/US!
When I found out about my AVM, it was 1980, I think, and I could not find ANYONE who had an AVM until this site, just several years ago, I think. I felt SO alone for decades ago, so at least you have a great support here for you. For instant, look how MANY comments here for you already!!! ;-) I think that that is beautiful, right?
Are you Spiritual and/or do you believe in God? TRUST ME, that area can do SO MUCH FOR YOU. Before my strokes/brain surgeries, 1990, I believed in God/Jesus, but they were on more of a back burner than They should have been. AFTER my medical crud, THEY then become front and center for my life, and I am so grateful and Blessed for that. I am giving you a direction, maybe? I hope so, because I KNOW that could help you.
Lisa
thanks tracey for those words of support just trying to get all the support together now and things are moving forward slowly but at least im getting the rehab now.
thanks lisa , ive never really been a big believer in god but through this site and with the absolutly overwhelming support of you and others on here i am getting there , im cant believe just how many comments on this discussion there actually is, it is as you put it "beautiful" that there are so many people out there that actually take the time to give there support and understanding to what we are or have been all going through. it just goes to show that the world is not such a bad place and that there are still people out there that have hearts and care for others, been posting myself on a few of some other peoples discussions on here and trying to help those who are having similar problems , and in that way it at least my way of giving back just some of the fantastic support that I am having here and the feeling that I am helping others through this as well makes it all worth it even if its just one person I can help and let them know they are not alone in all this its worth every effort.
x x x
tomorrow is the day when I have my cognitive test hopefully they can gather information from that to further help in my recovery and rehab , feel today like i'm back at school waiting for my exams to take place lol.
Update 30.04.2014
Had my cognitive test today it was much harder than I thought it was going to be, my neuro therapist asked me questions like reading loads of words out and then asking me which ones I could remember , told me a story and ask me to tell it back to him and how much of it I could remember, got me to copy pictures as best I could and read numbers to me and asked me to repeat them all within a certain time limit. it felt strange as he could see I was getting fatigued trying to remember what he was telling me.
never thought that taking information in could be so tireing, not sure how well I did but he said that it will help them to decide what they need to work on with me and what parts of the brain are functioning well and what parts are not?.
thats it for today x x x
Darren,
I'm glad you got through it and I know how exhausted you are! Like the therapist said, it will help them establish what areas they need to focus on. Rest up now!
Darren...I remember how hard that test was for me and I was exhausted afterwards. So glad you took the test, so they can decide what type of therapy you need to work on.
thanks louisa and trish,
Yes it was tiring, after I dont it I had a pain in the back of my left eye come on today, I have had the pain before behind my eyes but never like this, it made me feel quiet sick and had to go and lay down for a bit until it eased.
your right about the test though it was difficult but its all for a good reason so had to be done. but again thank you so much for your support.
think this disccusion is turning into a life story about this journey im on now lol
x x x best wishes to you all
Darren,
Since you got on this site, has it made you feel a little bit better of what you are coping with now? I HOPE SO. I am still thrilled with this AVM site, because I felt so ALONE for at least 2 decades before I found this site! YA HOO here for ALL of us AVM survivors!!
Even though I had what I had, I still got my Bachelor Degree/Graphic Degree in college, and I had a career in Visual Presentation Manager for 10 Carson Pirie Scott stores in both Illinois and Wisconsin. I STILL have had an excellent life before AND after my brain surgeries. My AVM did NOT held me back, because MY strength from within never let up!! Good luck and may God be with your 'journey'!
Lisa A. Stuckel
Hi Lisa,
Yes I do feel better since ive been on the site and reading and talking to others who have been or are going through the same things , it helps to know that people on here have first hand experience of all the different challenges we face and that they have a great understanding of what I am saying as they have been there.
its one of those thinks that unless you have actually experienced it its very hard to understand i think.
I dont feel so alone anymore knowing that this site is always here to turn to.
and thank you for your kind words , it goes to show there is a light at the end of the tunnel , its turning into quiet a journey though.
its nice to hear the success stories as it gives me hope that one day this will all be just a distant memory.
x x
Ok another update for everyone, 08/05/2014.
I have had the results back from my cognitive test , they have said thay I have problems with , my short term memory , long term memory and also keeping my attention focussed for any period of time before they see me getting fatigued.
My neuro psychotherapist has said that some of this could be down to my medication that is slowing my brain down as thats what it does and most anti seizure drugs do in theory making my brain take longer to process information , he also said that some of it could be down to where my operation was and may be perminant but they cant be sure of that as he said every brain is differnt and its still to early for them to know until my brain has healed.
I have also been given an appointment to see a dietician now as well so will have to see where that goes and because I am still having problems with my speech I have had an appointment to see a speech therapist
and this morning I have also been assigned a community care worker that I have to go and see on 22nd may still not sure what they will be doing with me yet suppose I will have to wait until the day.
My MRI has now been moved as well to June 3rd.
so many things going on at the moment its quiet confusing , there so many different people now I have to see it seems everyday I have a different appointment to see someone about something.
yesterday was not a good day for me as I had my mobile phone break on me and totally panicked as I could not get hold of anyone and they couldn't get hold of me either , it felt so immense my sense of emotion was overwhelming to the point I had a panic attack and was just sat crying my eyes out even though it was just a mobile phone. but at the moment its like my life line to the outside world and with out I was totally devastated by it, luckly I managed to get a new one in the end and now have my contact back with the world.
I know it only seems like a small thing but to me at the time it felt like the world had ended I find it hard sometimes to deal with this "over emotional state" is how I would describe it. where as before my op it would have just not worried me at all. does anyone else have this powerful emotional states happen since there avm. I have read about it a little but just would like to know from people on here what there feelings and emotions can be like when these things happen?
anyway thats where we are at so far.
take care everyone
xx