I am a survivor

manosj22 · #1 (**permalink**) 09-22-2009, 03:58 PM

A little over two months ago I woke up with some pain in my back around the shoulder blades. I didnt think it was much, since i am a very athletic and in shape 28-year-0ld. Little did I know what I was going into. That day I was diagnosed with an AVM and had my C7, C8, T1, and T2 vertabrae fused together. A few days later I started developing blood clots on my lunges and was very very close to passing away. With love and support from my family and friends, I am able to sit in my office and write this message. I have many complications from my AVM and want to share them with anyone else who is a member of this forum who need answers. If you have any questions, comments, or concerns about your AVM or for someone you love, please don't hesitate to ask. This is a very serious injury and is something that everyone should be educated on.

Steve · #2 (**permalink**) 09-22-2009, 04:31 PM

Sorry to hear of your diagnosis. Welcome to the community of people that none of us want to belong to. I hope everything works out for the best.

sarah morhun · #3 (**permalink**) 09-23-2009, 08:03 PM

so thankful for your reply, and would really like to no more about your situation such as your symptoms and effects.... if you would like to discuss this id be very interested to read it...
take care and thankyou for your reply....its so hard to find someone to understand whats goin on.....
take care and speak soon....xx

manosj22 · #4 (**permalink**) 09-25-2009, 01:35 PM

Well...I was a pretty healthy guy coming into this and was told that the AVM was something that I was born with. The extent of my surgery was a very unique case cause they actually had to remove "the roof" (The little nubs that stick out of your skin) and then remove the section that was effected. Because mine actually bled out, i was losing blood left and right. About 4 pints! They pretty much put me back together with plates and screws. THEN, I started getting blood clots on my lunges. That was no fun. Im on the recovery trail right now but am dealing with a few issues. I am having some urinary issues and have to cath myself a few times a day. I also deal with neuropothy (sp) which feels like a million needles poking you. aka, nerve damage. Lastly, i get tired very easily. It is difficult to even lift milk sometimes. BUT....i have come along way from not even being able to sit up. I returned to work two weeks ago and although I deal with a lot of pain, manage to make it through the day. If you have any questions, please don't hesitate to shoot me an email or a text or a call. It is good to hear from other people dealing with the same issues.

Jimmy Manos
manosj22@clearwire.net
904.728.1196

sarah morhun · #5 (**permalink**) 09-25-2009, 08:50 PM

thankyou so much for allowin me to read what you went through....it gives me hope that after my surgery i will still be able to live a partially normal life...
you went through so much and you still have the generosity to allow other people to no what u went through, that takes alot of courage and all i can say is thank you... your stories and replys have helped me alot...
i finally feel that i have a friend that no's exactly what im goin through, it might not be much but to me that means heaps...
i would love to hear more...
when i had my 1st operation the surgeon had to shave my spinal bones bak so he could see the avm... i still have an abnormal lookin spine but i cant really complain...
take care... ive taken your number down so i will give u a call...
take care and hope to speak to u soon...

manosj22 · #6 (**permalink**) 09-25-2009, 10:18 PM

When my Mom went through breast cancer i learned that nothing is worth either being embaressed about or ashamed of. At first I was embaressed of a few things but after a while i realized that its not worth it. I actually laugh at lots of things now. If you start to feel bad for yourself then it is going to make it harder for you. You seem like a pretty strong woman and one who is willing to fight. Remember that is the most important! Now if i read correctly, you already had a surgery for an AVM and are having another one? Details!!

sarah morhun · #7 (**permalink**) 09-26-2009, 05:05 AM

thanks for that it helps heaps...
yeah 2 years ago i was diagnossed with an avm and my sureon operated on the 1/11/07... he found later he issed some because it was to deep for him to go without causin major long term effects. he didnt think it would of grown bak.... then it did... i was pregnant so i waited til the birth of my daughter before i allowed another angiogram for the 4th time.... then he done it and found that my avm had grown to the sixe it was before he had operated... so now were back at square one, needin another operation because thats my only option... embolization wont work niether will radiation...
take care and speak soon