Hello. I am new here. This site has been challenging so far. I told a little about myself on my profile, I think it’s there. Anyway I’ve lots of questions about my cerebral avm, Like does it cause anyone here lack of energy? What kind of exercise is ok? Does it interfere with thinking/consentration? Are certain amusement park rides off limits? Can I have a baby without problems? Any help will be nice.Thanx
Hi Alison and welcome to the site. You will find huge variety and variance to the questions you ask. The symptoms and effects vary so greatly from person to person. I have a left temporal AVM that ruptured in May of 2016 and I had Gamma Knife in November of 2016. Post rupture I had no energy and slept most of the time for quite a while afterwards now I find I fatigue and get to the point where I just need to got to bed. Fortunately that has continued to extend and now often I’m well in to the evening. I progressed exercise wise from walking only o the full authority to do whatever I can from my neuro surgeon. I still experience some aphasia but is only showing up sporadically, often compounded by being fatigued. I was told not to do roller coasters, scuba dive or sky dive…I’m good with that but will ask the question next time I visit the doc. No idea about the baby! For everyone who replies I think you’ll find a wide range of responses. To me it is important to have a full understanding of yourself, and to have the conversation directly with your Dr. We have a great deal in common here but all our situations are individual, if that makes any sense. Take Care, John.
Thanks John. Umm…what is aphasia? Never heard of that one.
O, I was married at 25yrs old for 3 1/2 months. He was very abusive to me. That in itself is another story. Hehe wonder I’m still sane.
Also does everyone here see my replies?
Yes . I had a spinal avm ;my walking is affected by stiffness and pain .had two surgeries in one year .the last one a month ago ,and waiting for an embolisation in my back .wish you the best .
Welcome! You’re in the right place! It’s a support site so you’ll get answers saying what we experienced as opposed to what you should do. That being said, fatigue is very common. I was sleeping as much as 16 hours a day at first. 4 years later, it has gotten closer to 8 for me. I would recommend physical therapy (pt) as a way of answering your excersize question. For me, I couldn’t walk at first and aquatic therapy(swimming pool exercise) helped tremendously. Depending on where in your brain it’s located, you’ll see many different symptoms. What you describe is shared by others. Aphasia is basically trouble speaking. It can be different types of things. My uncle seems to understand. Speaks in words in sentence format. But it’s incoherent. It’s like he makes up sentences of random words. The last 2 questions are very specific to you and should be discussed with your caregivers.
I myself ride rollercoasters regularly. I got an ADA pass to avoid trying to negotiate the lines.
Have hope! You’re still here. The rest will work itself out : )
I’m a boy and couldn’t begin to unravel having a baby, but I have 3 boys. The raising part is fun. We work together to accomplish tasks.
Like you said I am still here so I guess the exercise I am doing is fine. But I’m not sure that Medicare will pay for physical therapy anyhow but there still is a lot I don’t know. Well I noticed for a long time I had some speech probs. I think most of it could be studdering though. So you have the trouble in your legs? Didn’t see your entire profile. My time is limited here but thanks for your message. Later.
Sorry for so long to reply, my aphasia was mild and limited to speech, particularly in finding words. Pre bleed I never encountered that.
Aphasia gets in the way of a person’s ability to use or understand words. Aphasia does not impair the person’s intelligence. People who have aphasia may have difficulty speaking and finding the “right” words to complete their thoughts. They may also have problems understanding conversation, reading and comprehending written words, writing words, and using numbers.
Hey since you’re a moderator can I send my pic to you, one that’s in my email, and you put it on my profile? If so, to what addy do I send it to? I use a different computer and what I can do is limited. Ty.
Not sure if I can do that or not, I’ll let you know. John