Hello everyone,
I recently had an avm bleed about a month ago. I have full use of my faculties although I suffer from constant headaches, frequent back aches, dizziness, and memory loss. I also have, or so it seems, a hard time computing the information people are relaying to me when they’re talking to me. My family is beginning to get frustrated with me because they mistake my inabilities for laziness. Is there anyone who is experiencing this as well or can anyone provide me with some suggestions. I’ve tried talking to them about how I feel but it’s been a month since my bleed and they were expecting a “faster” recovery. I understand that this is something I’ll have to deal with for the rest of my life and that there is a chance I’ll bleed again but they don’t see it like that. Any suggestions or comments are welcome so please feel free. Thanks and God bless you all.
I’m sorry to hear about the problems you are having with your family. I was dealing with the same thing befire my AVM was even diagnosed… Constand headaches, dizziness, nausea, difficulty concentrating, etc. My family was convinced that I was just not handling my stress well and though I needed a therapist, not a neurologist. As soon as I had an MRI come back showing an AVM the size of a golf ball planted deep in my brain, they changed their opinion very quickly.
If you want your family to read something from someone that has been through it, have them read some of the stuff on this forum. My diagnosis led to a year of medication, tests and MRIs before being released. A couple of years later and my problems were back. More MRIs, angiograms, medication and neurological tests and I was having surgery. I spent 9 months recovering from my surgery. That was over 4 years ago and I am nowhere near back to “normal”. To have your family doubting you is not your fault… it is their issue. Perhaps they are in denial and want you to be the same way you were before the AVM started causing trouble, but they really need to understand that it is not something that is going to heal in a month. It may not even heal in a year… It may never completely heal.
Feel free to ask us as many questions as you want. The people on this site either understand or want to understand. I wish you the best!
Jake,
Thank you so much for your response. It’s so comforting to be able to talk to people who understand what’s going on. IT’s scary to think there’s a chance I could bleed again and not even know when that may be.
This is an awesome sight for help and I’ll make them aware of it, just for them to go and read some of the other stories that have happenned to other people. Please keep in touch with me and I wish you the best as well.
Jessica
Jake M said:
I’m sorry to hear about the problems you are having with your family. I was dealing with the same thing befire my AVM was even diagnosed… Constand headaches, dizziness, nausea, difficulty concentrating, etc. My family was convinced that I was just not handling my stress well and though I needed a therapist, not a neurologist. As soon as I had an MRI come back showing an AVM the size of a golf ball planted deep in my brain, they changed their opinion very quickly.
If you want your family to read something from someone that has been through it, have them read some of the stuff on this forum. My diagnosis led to a year of medication, tests and MRIs before being released. A couple of years later and my problems were back. More MRIs, angiograms, medication and neurological tests and I was having surgery. I spent 9 months recovering from my surgery. That was over 4 years ago and I am nowhere near back to “normal”. To have your family doubting you is not your fault… it is their issue. Perhaps they are in denial and want you to be the same way you were before the AVM started causing trouble, but they really need to understand that it is not something that is going to heal in a month. It may not even heal in a year… It may never completely heal.
Feel free to ask us as many questions as you want. The people on this site either understand or want to understand. I wish you the best!
Jessica,
What you describe is just like what my daughter, Nea, experienced after her bleed and subsequent crainiotomy.
I regret to say that when she first had her bleed, I didn’t realize how it affected her. I was so happy she was talking to me and knew me that I didn’t see what difficulties she was having.
Luckily for me, Nea was able to realize what she needed from her support team (family and friends) and shared this with me. She would tell me that she couldn’t process information when there were multiple conversations occurring around her, that she needed me to repeat time and time and time again what the events were that led her to being in the hospital, that she couldn’t remember what had happened just a few hours ago.
I wonder if your family needs to hear the same from you and your medical team. Could it be that they are like I was, meaning ignorant of how a bleed / stroke affects you?
I hope that with a little explanation they will realize how difficult this is and how hard you are working to get back to where you were. I can only imagine how it hurts (and adds to your difficulties) to not feel your family understands and supports you.
One fairly common thread in all AVM patients once the AVM acts up or bleds is that the person is TIRED a lot. Part might be the AVM itself, and part might be interaction / side effects of drugs you are taking.
Some of the key things we learned is don’t push it–when the body says rest, REST. Don’t skip meals, don’t get exhausted, and limit alcohol.
An AVM can hit you like you’ve been hit by a bus, only many times there are no visible scars. Doesn’t mean there’s any less damage.
Best Wishes,
Ron, KS
No need to thank me, Jessica, but you are most certainly welcome and I promise to stay in touch and hope you’ll do the same. I see on your page that you are from Riverside. I live in South orange County amd have been through Riverside three times in the last two weeks! I don’t know the exact count, but there are a decent number of members of this site that are from the OC/LA/Riverside area.