Joey 12yrs old with Spinal AVM

[traci]

Hi my name is Traci and my son Joey has spinal avm, we found out early December 2009. I am still overwhelmed and not sure what is going on. I have looked online and talked to drs till i am blue in the face and i am still shocked. Joey's spinal avm is massive, he has had 2 angiograms (blockage was done) and surgery. We go back to the childrens hospital in Jan for more. He was totaly paralized from waist down when we went in, but he has gotten everything back except for right foot which will probably never come back because he had bleeding and it did damage.

I am not sure if I can go to SS to claim him disabled, and they are not done trying to stop this thing, so i am not sure if he will have more damage later. He went without his bladder for 3 weeks and had to learn how to cath hisself (which is not fun with a 12yr old male).

Right now I guess I just need support, no one really understand what I am talking about and I feel alone. I am scared to death! My baby is 12, what is his life going to be like? Will he have a life? Will I have to bury my child? Those questions run through my mind alot, and no dr can answer them. Please
just share any thoughts u may have with me good or bad i just want to know we are not alone.

Thanks
Traci

[Steve]

Hi Traci,

I'm sorry to hear about your son and your situation. As one who experiences a Spinal AVM that cannot be cured, I understand and sympathize for others in similar situations.

You certainly can claim SS disability. It is a long process, but worth it after acceptance. I did a small documentation of my SS experience here: http://spinalavminfo.com/forums/gene...-security.html

I'm not sure what kind of comfort and support that I can offer, but my views on life are probably a bit abstract compared to most. I believe that life is what it is and you can only do what you can do. Anything that happens from that point is beyond control, and should be accepted as how it must be. I don't think it's possible to move forward otherwise. Take comfort in knowing you've got what you have now and that you're doing everything you can.

Best of luck.

~Steve

[traci]

Thanks Steve!

[kennyb]

Hi Traci, I'm Ken. I was 52 whn I had my spinl avm. You can read my story in the forums.
I was fortunate enough to have this thing caught before I was completly parylized but I have not recovered at all.
I can still walk but I am about 20% of what I used to be and I am in pain 24/7. The dr's told me that if I was to recover it would one to two years and now it has been 1 1/2 years. To be honest, I have never heard of anyone fully recovering.
I have learned to deal with what I have. I live through the pain that has become part of my life. I try to keep a positive attitude and that helps.
I wish your son all the best and I will pray for a full recovery for him.
Ken

[traci]

Thanks Ken

Update
Joey went to dr today all we can do is angiograms every year and hope for the best. Between this site and doing some research online I feel that we are a little more prepared for his AVM. He is in some pain it comes and goes, he is learning to walk again and should return to school sometime in Feb., sometimes I think he handles this better than me. He is tough and will be ok. Thanks all for the support and everyone is in my prayers.

Traci

[traci]

update on Joey, therapy is over he is gotton back to somewhat of normalcy he has pain, tinkling numbness and gets very tired. he is back to school half days because he cant make a full day yet next angiogram is in may to check how he is doing.

[nanabear1]

Hi Traci

As a 52 year old woman who has gone through this for the past year I can bgo by my experience. I was almost permanetly disabled before they finally found mine. I had the angio and surgery. I walk with a walker and have bladder incontinence all the time. I will pray that things go well for your son. From the sounds of things he is a fighter so I am sure he will be ok. A positive attitude is what has helped me through this ordeal. I may never walk again without a walker or the use of a wheelchair but I am not totally paralayzed and in a wheelchair permantly so I take each day as it comes. I am numb from just below my waist and my legs ache all the time but I do not dwell on it and just take it as it one day at a time. My feet are also numb a lot of the time and my legs feel heavy. I am blessed to have a very loving husband that sees to it that I get out ( since I have also lost the ability to drive and a lot of my independence) and a supportive family. I too get tired very easily. Just keep smiling and praying and be glad that you caught it when you did and that they are keeping a eye on things. He is a child and they bounce back and take things in stride. So be happy and smile and enjoy each day. Take care. ((HUGS))

[traci]

Thanks nanabear I hope that you are doing well. I keep telling the doctors that joey gets tired all the time they say it will get better but I am not seeing it and others here say they are tired alot, but we can deal with it one day at a time. Thanks for the post, i find comfort in chatting with others here. Keep me posted on how you are doing!!!
Traci

[manosj22]

I am 29 years old and had surgery for a spinal avm about 9 months ago. I too was paralyzed due to the pressure the avm was putting on my spinal cord. I had to teach myself everything over again. Your son is young and in time will hopefully have a full recovery. He will be tired, have bladder issues, and be in pain a lot. He needs to understand that he is not alone and that there is always someone out there who has it worse then he does. Be strong and take it one day at a time. Nobody wishes this on anyone but your son is a real hero when he can look back on this and say I cheated death!!

[traci]

Hey e1, Joey started feeling pain that is not the normal everyday pain went back to ER and had MRI, Dr decided to do angiogram early so we will be heading to birmingham this week will update when possible.