After......Diagnosis!:(

Does anyone feel like having an AVM or any other neurological problem has changed their entire life? Do you have a different perspective about their life? Just curious how others felt after their diagnosis.

I didn't know I had an AVM before my bleed. The bleed and the resulting neurological problems most certainly changed my entire life! It changed everything about me. I definitely have a different perspective on life. I know what is truly important and I cherish those things: my family, my friends, my children's health. I guess in a round-a-bout way the AVM changed my life. The AVM caused the bleed. It's because of the AVM that I found this site and it changed my life so much for the better. I've met some amazing people and have made lifelong friends. I don't think that's exactly what you meant Erin, but that's my take on it.

I can't say just by me knowing I have the avm has changed me. When it started to give me problems, I have multiple symptoms, that's what changed me. I knew about mine for 16 years before I finally had it treated with GK. Now, I just have two small ones.

Ben

Since I had a massive AVM bleed…yes it changed me. However, I believed it changed me for the better. It took a lot of years but I truly think the bleed was a blessing. Everyday I am at work I help people who are mentally and physically challenged.

I definitely feel that having my avm has made me the person I am today. Just like others say I know those who are important to me in life. I don’t have time for those that are not. I also work with kids and adults with physical disabilities. Some have similar stories to mine. It’s great with the kids as I have massive scar that you can see some days and they ask about it. I can explain in simple terms to them and I know who they are feeling. I am very lucky as I have no symptoms since my surgery except the odd pain in head. I did not know I had an avm until it bleed. I was only 8 so I did not know or understand it all just knew I was sick. However as an adult I found this page and started too communicated with others. I can say for sure that I really believe I went through all that and survived to become the person I am today doing the job I do and I love it.

Absolutely. I usually am not certain about much, but this, I am.

I like to see it as my pre-avm burst life and post-avm burst life.

Much different priorities in the post-life. That term sounds kind of creepy...if you're Christian, it might seem less creepy if you think of this as your own personal resurrection...that still seems creepy...short answer, yes.

well since i've had AVM since a very young age i don't really know what a 'normal' life would be, i miss out on a loada stuff like i cant have alcohol due the medication i am on, so some would say i am missing out, i do also believe AVM shaped to be a better more understanding person than i would have been than if i didn't have it

i got seizures after avm removal, worried how to get permanent cure of seizures?
if anyone have such experience, please share

I'm somewhat with Julie on this subject. I have Pre AVM Bleed life, During AVM Life, Post AVM Life. I wouldn't say its changed my entire life, but it sure has mixed it up a bit. I have a completely different look at the world of disabilities now. What I thought I understood before is now real in a positive way.

I have a new perspective on People and how I should think or treat them. Are they just grumpy or having a bad day for a reason? (emotional, medical, health etc)

A whole lot of "things" that would normally bother me in some way, I just don't think are very bothersome at all now or I try to not let those things bother me. (Traffic, weather, bus that is late etc)

A new perspective on friends, family, healthcare workers. (good and bad)

A new perspective on my job/career. (good and bad)

I found this website/forum to gain a new perspective on "Us".

We're all unique with something in common, yet so different...

to be honest i didnt take my original diagnosis serious until i had a bleed 1 month later....that gave me the biggest kick up the ass and woke me up. God bless

I actually found it accidentally. One day, I had a difficulties in breathing while i'm studying at school. The teachers panicked and took me to the nearest hospital in school. While taking a test for any heart and lungs, I told them that I had a headache and i had it often, like almost everyday sometimes a severe one. Then the doctor told me to see a neurologist and take a MRI. I took it and, voila there it is! Something is been there since i was born. And OF COURSE it changed my life. I have to do things carefully and keep my blood pressures low to prevent any hemorrhage. I was absent in school almost a month and it does affect my grades. My friends knew about my CM, but none of them does really understand completely and some of them thought there's nothing wrong with me. Because we seems healthy from the outside (anyone agree?) but inside our brain we're struggling so hard!

I found this site is really helpful. It's just so nice to know there are many people with the same condition as yours. :)

My AVM has changed my life in many ways! But the biggest way it has effect life for both my husband and I is not being able to have more children until this time bomb is out of my head :(. For years that was the hardest and most painful thing to handle. Now I am better about it but what bothers me are the seizures and the not knowing. I hate leaving in fear all the time. So that has changed how I live my life. But my post AVM life is more fun sometimes hahaha but I miss my pre AVM life a lot.

Hi Erin...I feel that I have changed after being diagnosed with my AVM, after my procedure. I do hope that the change has been for the better.

I will admit, I was depressed and really anxioys to return to the way that I was prior to my AVM bleed, but I learned to be more patient with myself. I learned to be patient in general.

I learned how not to treat others who are "different," and what it truly means to not judge others. I remember how hurtful it was to be judged while I was going through my recovery. There were many times I was treated like if were a freak, or inhuman by some of those around me. I learned to not treat others that way, and to be sensitive to the battles that others go through.

I also learned, that even those I have disabilities (caused by my AVM), that it does not make me any less of a person that does not have any disabilities or limitations.

Are you holding up well after diagnosis and surgery?

I got seizure twice after AVM, can anyone share this with me who went through this situation!!
Thanks

Hi Erin...yes, for me too :-) I didn't know about my AVM until my bleed a little over a year ago and this juncture in my journey certainly has changed alot of the paths that I was traveling on. The paths are now alot more brigther and clear and I take the time to stop and enjoy each and every rose along the way :-))! Therefore, I guess you could say that this AVM experience has brought so much light into my life yet in a terrifying way. I truly believe that the blessings that have come my way as a result of this would never have surfaced if not for my AVM. I also have met some amazing people on this site who have helped me so much thru this and I hope that I can give some of this back!

/Michele

Though a lot of people would call me crazy I am glad I had my avm. It gave me a better perspective on life and helped me be a better and more understanding person. I don't wish it on anyone of coarse but am glad the Lord and my family was there to help me through it.

Thank you all for sharing your perspective. It can be difficult diagnosis physically and affect your emotions. Everyday is a new one!

I did not know anything about AVM till by CT scan found bleed and the cause was AVM, first time I listened about this. Alhamdulillah (thanks to all mighty Allah) it was treated successfully, I was recovering very well, but got seizures that mostly effected me, like my driving license is suspended and could not join my job yet, waiting for my neurologist to release me.
I want to share the experience of those who suffered from post AVM seizure how to handle?
Regards!!
AADar