Has anyone had severe speech issues after AVM?

I am looking for advice on severe speech issues after removal of an AVM in the left Temporal lobe.

Any advice on recovery?

Thanks so much

Hello Renee, yes I have had severe speech problems. My AVM was in the left temporal & posterior frontal lobes and the surgeon found that it was much bigger than the MRI had showed. He had to remove viable brain tissue which left me unable to talk, remember things & people etc, etc,. When I started rehab for speech and memory therapy, my language skills started to improve. I spent 6hrs per week for 10 months in rehab and they were wonderful to and with me. Therapy really does help so very much; I finished rehab in July this year and I still do therapy for both speech & memory at home and this is how I can use the computer again now. I just Never, Every give up!!, as I was told that the brain that was taken away was a ‘pathway’ to the mouth and the brain WILL work to find new ‘pathways’ if exercised and I find this to be true! Just ‘keep on keeping on’ and try to be as positive as possible as it will get better. My prayers are with you, take care, Lesley.

Renee and Lesley, I couldn’t write anything as well as Lesley did. I also had a left temporal lobe AVM and had a craniotomy after a brain bleed. At first I couldn’t talk, read and had a problem with my right side vision, but going for therapy and as time passed, I’m much better. Renee, your daughter will improve. There will be a pathway created. My prayers and thoughts are with you and your amazing daughter!

Thank you Lesley and Louisa! My daughter is 10 years old and we started rehab as inpatient on July 4th after 31 days in ICU from it bleeding…she is lucky to be alive. So it has been about almost 3 months of therapy, she can say 10 words now, and is slowly improving…I live in the day so I cannot see one year from now. Thanks for the support and that there is light at the end of the tunnel…time…time…
I just want to make sure I am providing every means for my daughter to get better.
My thoughts and prayers are with you all too!
Renee

Louisa, How long has it been since your craniotomy? We are 1 year out now and my daughter can talk, broken sentences, putting together 2-4 word sentences and that is how she writes too. Spelling is an issue since talking, writing go hand in hand. She too has right blind spots. She is doing 2nd grade reading via audio books and comprehends on a 2nd grade level and reads herself on a first grade level but is doing math at a 3rd grade level. She should be in 5th grade. Physical therapy wise, she only has right foot drop but we are trying the walkaide, which helps a lot. Her right hand is usable, she can open and close it and carry light things but has become a lefty now. When we got to rehab, like you, she wasn’t even speaking, wasn’t walking, and not moving the right side at all. She has come far…she is 11 now, and it is hard for me to see what she will be like another year from now. Have you continued to get better? How long has it been? Thanks so much for your advice!
Renee

Lesley, So glad you are able to write and things are going well. It had been a year since your post, how are you doing? My daughter is 11 now, and can speak in 2-4 word sentences, broken, but I do not need to interpret anymore for her. We are one year and 2 months out…still going to alot of therapy via private and school. She should be in 5th grade now, but is on 3rd grade math and 2nd grade reading comprehension. She does not write well as she is a lefty now but she writes like she speaks. I pray she continues to improve. How long has it been for you? Thanks so much for your advice, it helps!
Renee

Hi Renee. There are 2 sub-groups here you may wish to join…
http://www.avmsurvivors.org/group/parentsofavm
http://www.avmsurvivors.org/group/avmnearspeecharea

Hello Renee!! Great to hear from you again; it’s hard to believe that it has been one year since my post & our talk. I am so very happy that your daughter is getting better. I know that it is a slow process, however, process is nothing but good! You are a wonderful mother having private therapy as I really believe that ‘therapy’ is the answer to recovery. It certainly has been in my case. Your daughter is very young, which is awful that she has to go through this, but youth can do more that someone of my age (57). I am now 2yrs & 2 mths since surgery and I too, like your daughter, has come a long way and still have a long way to go!! I understand how she writes like she speaks, I was just the same! Nowadays, my life is very different Renee, my husband couldn’t deal with the changes in me and told me to leave; so I have been able to get a little unit by myself and run my life, though I must admit that I do need help with forms, memory & things like that. Fortunately, I have a wonderful family and they help me so much, I am blessed. This site & the members have been my life line going through the heartache of my marriage failing, as he had been the ‘love if my life’ and I went to pieces and it was terrible; my poor brain had a rough time! lol. Through all of this drama, I am getting stronger and still learning with language skills, memory loss, and I don’t need to let you know about those things Renee; I just want you to know that ‘it does get better’ through all sorts of situations and Louisa (my wonderful Twin) has been an angel with love & support, always! Reading that your daughter is reading in 2nd grade, I thing that is absolutely wonderful!!!..I had to start with baby books, so believe me, she is doing well. As for 3rd grade maths…she is amazing!!..my maths is still not so good. It is still very “early days” for your wonderful daughter Renee. Just keep it going and do what I do, I Never, Ever, give Up or In !!! So very happy to hear from you, keep in touch as I KNOW ‘life’ will get better; it just needs time. Please say hello to your daughter for me, and the very best wishes from me to you, your daughter & your family! Thoughts, prayers & AVM love from me to all of you, always. xxxx

Hi all, well done for all, especially renee and lesley. renee glad your daughter is doing better.

Myself, i had the same left side bleed - i lost the power of speech, totally. I could not say 2 words together; i could no longer read at all, it was a nightmare. I had speech langauge everyday for almost 6 months. I managed to get a lot back - aftter 4 months or so, i figured that in 5 years time, I WILL be able to one day, be able to work in an office, do the sames i wanted to do. And i do work now, as a designer. ive manage dto get back about 90% speech, altho its still very, very hard.

Each one of us will have different bleeds, but it is possible to bring back a lot. Its a lot of hard work, but never give up…

Thanks Rich! I gathering advice gives me idea and much hope for my daughter as I am on a quest to do all I can for her. You getting 90% back is wonderful for you and I’m proud of you for your hard work. I know it is hard for me to coach my daughter and the frustration is off the charts. You have given me the patients back to let time heal but also to push push push her. Thank you and you must be a wonderful designer because your passion is there!
Renee

Thank you so much for replying…I have been so busy with recovery for my daughter, I almost for got how powerful this website is. I can only pray that she will write like you someday and I will never give up that she wont…I push her all day every day…lol…lovingly of course. Sorry to hear about hubby but that too will pass and you are the better person. Glad you have a wonderful family…as many people dont.
I will touch base and I’m so sorry I lost contact…I won’t from now on…
xoxo

Yes i can understand the frustration - i myself went through the same thing! And still do, everyday. Maybe one day tho, perhaps art could be your daughters would be career; you dont have communicate everyday in that way of life. As a designer, i dont have to constantly be on the phone with clients, or my boss in fact, i very rarely get to have to be on the phone. So i get emails through, and then i dont have to type, or communicate - i make pretty pictures…speech therefore, is not a problem most of the time.

Im also on the way of creating a small tricks and tips page right now, of how to get pass aphasia in the office, might be useful one day for your daughter.

Those tricks and tips are very important as my daughter has global aphasia. She still has far to go, she cant write like you can as of now but we are just one year out and she is 11 yrs old. Patience patience patience…one day at a time… Let me know how your tricks help you. Thanks so much!

Hi renee, im managed to post a few things that could be useful - http://www.avmsurvivors.org/forum/topics/aphasia-trade-secrets Made take some time yet for your daughter, but if she keeps on going, she could do it im sure :slight_smile: