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AVM Survivors Network

Losing my language - New here

#1

After lurking on this forum for months, I have finaly decided to sign up. Little over a year ago, I was diagnosed with an AVM in the left temporal lobe. It was discovered when I visited a neurologist because I had had several episodes of sudden loss of speech. These often last for over an hour and leave me scared and very tired.

My neurologist send me to a university hospital because he did not have any experience with AVM’s. At this hospital, I was told that they did not want to treat the AVM because they thought the risks would not outweigh the benefits. They mentioned the ARUBA trial, which I had already read all about, and told me that I might have another 20 years before anything happened. As I was 24 y/o, this thought did not do anything to make me feel better. I was aiming for at least 80, not 44.

My local neurologist send me to another hospital which has a Gamma Knife centre that is run by a very experienced neurosurgeon. He allowed me to choose between traditional surgery and GN, but told me that he would not advise surgery as it would come with a 10% chance of me losing my speech. A fMRI had shown that there is a neurological pathway which is important for both active and passive use of language and he told me that if the AVM w,ere to start bleeding, he would have to cut right through it in order to save my life. I had the GN procedure 6 months ago.

Right now, I am trying to write my thesis and finish my MA in literature (oh, the irony) but it is hard to focus sometimes. It really helps to know that I am not the only one going through this. My friends and family try, but I don’t think you can ever really know what it is like until you’ve experienced this yourself.

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#2

Welcome Monique! Glad you decided to join us. I also have a left temporal AVM that was discovered in May 2016 when it ruptured. Ultimately I ended up with the choice between craniotomy and gamma knife, and was ultimately recommended to gamma as the least risk. Mine is on the inside of the left temporal and the problem was getting at it. So I had gamma knife in November 2016 and am now awaiting word on an angio to see what’s up with it.

I hope your 6 months has gone well and you are not experiencing any side effects, and that your Thesis is coming along well! Take Care, and again welcome, John.

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#3

Hello Monique,

I had my second bleed when i was 18 - i was in a coma for around 5 days. They opened my left side to relive pressure. When i work up, i had basically lost the power of speech - totally. I could not read, nor could i respond. I could say the odd word, such as “the”, etc. But it was a bit of a nightmare.

My speech came back as some point, as i had plenty speech theraphy. That was over 20 years ago (im now 41). I can read and write - although i had my best GCSE at 16, which was A level (sods law!). Now, i can read abook, but bloody hell it takes me some time to do it. To right this as well, is tough - i have to type it and then in google, as its not easy. I work as a designer in an office, but its tough - im rubbish for responding on the phone.

So each stroke will have its own issues - but speech can come back, to a degree.

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#4

Thanks for the welcome!

I am experiencing side effects from the GN. Aside from the cosmetics (I lost a patch of hair and am left with a scar from the frame) my epilepsy got a lot worse. It sucks, but I am still happy that I had the procedure as the idea of just having to wait for a bleed killed me. Hopefully, things will get better in a couple of months. My surgeon told me that side effects like that usually reach their peak at around 9/10 months.

What you are describing, Rich, is what I am most afraid of. I have always wanted to become a teacher and really love learning languages, reading and discussing complicated subjects with anyone who’s up for it. During my epileptic episodes, I am completely incapable of forming words, sentences or concrete thoughts. I am also not able to understand what people around me are saying and it makes me feel completely helpless and scared. Every time it happens, I fear that some day, a bleed will make that situation permanent. It is good to know (and have proof) that things do get better sometimes. If anything happens, I hope that I will have the strength to recover like you did!

I had to look up sods law btw, haha! English is not my first language and here we know it as Murphy’s law.

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#5

hi monique,

as for all, its going to be tough, everyone has their own issues and different degree of problems, but there are ways to compact speech. I have published a small article on how to beat speech; or at least a way to go around the life in an office.

Also, i had GKR twice after my 3 bleeds - i never had any futher issues after it myself. My neuro was concenred over visual perhaps, but not the speech (didnt have any problems). I never had any issues at all with the GKR.

You have to way up the situation - i figured that unless i have the GKR soon, im gonna die. So that rather solved the issue myself. Now they say that my AVM is almost gone…i can speak and understand, so im reasonably happy about that. I wish you good luck…

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#6

My AVM ruptured when I was 20 (10.5 years ago) and it took 3 surgeries to stop the bleeding. After the second surgery, I experienced expressive aphasia, basically I lost the ability to talk. Though I could understand what people were saying to me, when I tried to express myself at first, I often said the wrong words. My AVM was in a location that there was a huge difference in my ability to speak, read, and write. Because my AVM occurred when I was 20, I did regain much of my speech (after a lot of therapy), but I do occasionally have expressive aphasia still. And I hear you on it taking a bloody long time to read a book. Audiobooks are much more enjoyable for me, now.

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#7

Hi Monique,

Welcome. I want to give you mad props for being able to communicate in English as a second language (on its own) AND for doing so after dealing with language complications because of an AVM.

As for what Rich was describing, I can also talk about those difficulties. They suck, for sure. But, if you put your mind to it, you can get some (or possibly even all) of those skills back. It just takes (a lot of) time, patience, and the willingness to keep trying, even if you fail a lot in the beginning.

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#8

audiobook, i might try that. Im just always enjoy having the book. Maybe i can combine then together…?

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#9

Yep, you can combine them. It just gets confusing sometimes, because the audio book is sometimes edited and cuts some of the text out of the reading. If you have an original kindle, you can select the text reader and it will read the text as is AND allow you to see what is being read. Kindle (again, the original kindle) is the only ebook though, that has an audio version, I believe.

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#10

So much at such a young point of life.
My AVM bleed almost fatally 5 years ago at 48.
One comment I must make - your brain will always grown and change and you can be the teacher in how this goes . Doctors will state old school , “after … the brain doesn’t change…” smile and ignore

As an aside I didn’t have a speech issues but some verbal challenges and for fun and exercise I started learning sign language.

Stay young and grow. You can write beyond 80 and have rich experiences from which to draw from
Be well

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#11

Audiobooks are great! I listened to a lot of those after the GN when I was to tired to even lift my head of my pillow. Is Storytell available where you live? They have a very large collection of audiobooks. Kind of like Spotify but for books.

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#12

Monique,

https://www.storytel.com is a great idea but it looks like it caters for less common languages – English, French, German are missing – though other languages such as Dutch, Scandinavian languages and others are listed.

Great idea!

Richard

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#13

That’s a shame! I assumed they would offer different books in different countries. I have the option of Dutch (I live in The Netherlands) but I also listen to a lot of English books and even the occasional German book. I thought the limited offer of English books was just regional. Maybe there are other options like this that cater more to those more common languages?

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#14

The site is set up per country, so in each country, you’ll find a selection of different languages. But there’s no fully English option… I did find some English books on the India option but clearly a large number of different Indian language stories (and the cultural focus is clearly Indian). As you say, each country option may contain some English books.

It’s absolutely a market that ought to be taken up.

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#15

My situation is quite similar to yours, although English is my only language.

I had my first and only generalised seizure about 2.5y ago and had a scan which identified an unruptured left-temporal AVM.
In retrospect, I had at least three focal seizures in the year before my generalised one but, being naive, I didn’t recognise them for what they were at that time.
I take Keppra for seizure control.
About 20mo ago I had Gamma Knife SRS. I felt very fatigued for months after and developed severe migraines. These side effects seem to be receding recently, albeit with the aid of corticosteroids. My focal seizures also seem (fingers crossed!) to be becoming less frequent and less severe.
My choice was based on the same reasoning as yours; probable average lifetime cumulative risk of bleed is too high to not do anything (a shame the ARUBA study could not be completed).

I have aphasic focal seizures similar to what you describe but shorter; mine only last a few minutes at most.
They proceed as follows:

  1. Feeling of derealisation (cold/unreal reality quality)
  2. Epigastric rise and feelings of nausea
  3. Ringing/buzzing noises begin and increase in volume, drowning out other noise at peak (tone is quite pure and rises in pitch but with a pulsatile quality).
  4. Symptoms subside in reverse order.
  5. Depending on length and severity, may make me drained and tired.

During the seizures it is very difficult/impossible to understand what people say- the words are just meaningless. In the same vein, it becomes difficult/impossible to think in terms of language/using labels- this seems to preclude quite a lot of abstract thought from occuring at the time.
Near the start of the seizure I can feel my language “drain away” quite quickly.
Towards the end of the seizure my ability to fully utilise language returns slowly over the course of 10mins or so depending on initial severity.

I seem to have full memory of the events and can function relatively normally during them (although thigs are hard work due to the abstract though handicap). I can still intuit during the episodes, it just prevents language use internally and externally.

I worry similarly to you, about the symptoms becoming worse or permanent, although with time and symptomatic improvement this has diminished somewhat.
I use a hand signal to communicate a seizures to people I know. It is similar to a Queen Elizabeth hand wave/shake. At least they then know what is happening and to not worry too much or bother to try and talk to me!

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#16

That feeling of your language ‘draining away’ happens to me too. I usually have time to tell people around me that I feel a seizure coming. Doesn’t always work though. Last time, I tried to text a friend that I would be late but when I read the text later that night, it was just a collection of random letters.

My friends know they just have to leave me alone. I find a quiet place and just wait for it to go away again. They know not to touch me as I feel very claustrophobic during a seizure.

I’ve also felt very fatigued for months now. It’s nowhere near what I experienced right after the procedure, but still very anoying. Tonight, I had to cancel plans with my friends because I was so tired, the world started spinning.

It really sucks but it helps to know that I’m not the only one going through this. It can get really lonely when you have no one who knows what it is like to have all of this happening to you, so I’m very grateful for all of your reactions!

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