Please help! My daughter and her boyfriend are SO SCARED! WE ALL ARE!

Hello. My duaghter’s 26 year old boyfriend was diagnosed with an AVM back in March 8 2009 when he was hospitalized with an aneurysm inside the AVM. the bleed was successfully embolized then with no complications, he is on Keppra now. Apparently the AVM is in the worst location possible and is inoperable near the hindbrain, pituitary gland and optic nerve. he needs gamma knife surgery (radiation?) but has no more insurance and no doctor will perform this procedure! In the meantime, he has been out of work and awaiting approval of disabilty and medicaid so he can have coverage for the gamma knife procedure. he was told he is not a candidate for repeated embolizations. What an emotional rollercoaster this poor young man has been on!!! All he wants to do is live a normal life without worrying he may die from another bleed or stroke! Is there any advice you can give and please give prognosis if possible? we would like to take my daughter and this young man on a trip this Thanksgiving as long as he gets clearance from his doctors (no flying in a plane). ANY advice is appreciated!! God bless all of you with AVM’s, I pray you will all live long happy healthy and fulfilled lives. Thank you Noelle in Chicago

Noelle,

I am not far from and am a native of Chicago. I am sorry to hear that your son-in-law has this condition to contend with. I was 22 when I was diagnosed and am now 42. My AVM is still active and inoperable. Tell him to not give up, to keep searching for the brighter things in life. He has a bumpy road ahead of him but it is not impossible to ride through it, just wear a seat belt and hold on to those who are loved.

The Cyber Knife may be a better option for him as it is a much more percise form of radiation delivery. Dr. John Adler of Stanford University created it by using technology from the auto industry and NASA. It can irradiate where the Gamma Knife cannot. I think there is a Cyber Knife in Oak Lawn.

Go to this site and look for locations.

http://www.accuray.com/

I’ll pray for him.
Kim

He’s so young and has great prospects with medical advances. It does sound like the GK is a good option given where it is.

Have you checked with the financial services depts of the hospitals? Often they can work something out if they disability is pending.

Thank you for your kind words of encouragement Barb! I am so sorry to hear about your 11 yr old son, I have 4 kids ( 3 OF THEM BOYS) and I cannot IMAGINE going thru what you are going thru! I pray your son will come thru this ordeal ok. As far as my daughter’s BF. yes, it is a miracle he came out of the bleed with no deficits. He has been told he may have some short term memory loss but he seems to be ok. It’s the waiting around for the optimal treatment (gamma knife) that is driving him crazy! I can only imagine he must feel like there’s a time bomb waiting to go off in his head! I feel so so badly for him, I don’t know what else to do for him but offer encouragement. Anyway, thank you again and prayers for you and your precious son. Noelle

Barb V. said:

Hello Noelle,
So sorry to hear about another young person who’s life is forever changed with an AVM! I am just learning all I can as my 11 year old son was diagnosed in March as well. The only thing I can say is that it is both amazing and wonderful that this young man came out of a bleed with no complications. I’m sure it is not much of a comfort considering all he is dealing with, but at least he came out of that “in tact” so to speak. I have heard that getting on disability can take some time, but it sounds like he is a good candidate. After talking with my son’s doctor today after his angiogram and reading other comments on this site I know the gamma knife is a radiation used when it is too risky to operate or it is after other means have not completely obliterated the AVM. It can take one to two years or more to know if it has worked. I hope your daughters boyfriend will qualify for the help he needs! Barb

Hi Brian! I believe this young man has exhausted (maxed out?) his insurance. I know it seems like he and his mother have been getting the runaround. I mean, this young man has always worked and supported himself, and his family at one time–and now he can’t get insurance to cover a potentially life-saving treatment/procedure so that he can heaql, get back to work, and get on with his life! It’s such a travesty if you ask me, I mean this IS America!! I am outraged, I can only imagine what his mother is going thru! Anyway, I don’t really know what’s going to happen, I came here to try and get advice, hoping someone else had experienced the same difficulties with their insurance. Anyway, best wishes to you Brian :slight_smile:

Brian said:

He’s so young and has great prospects with medical advances. It does sound like the GK is a good option given where it is.

Have you checked with the financial services depts of the hospitals? Often they can work something out if they disability is pending.

Hi Kim! Well, he’s not my son-in-law yet but close enough :slight_smile: I will tell him about you as I believe your story may be very similar to his at this point. His worst fear (besides dying of course) is never getting rid of this AVM and always being afraid of another aneurysm bursting. The poor guy was minding his own business and then BOOM, he suffers a brain bleed for the first time back in March!! He never had a clue this could happen! My daughter and he have been thru more stress and heartache than anyone I know so my husband and I wanted to do something nice for them and take them on a cruise this November. He and my daughter are cautiously excited about this trip and we are cruising b/c he has flying restrictions. Well, I hope and pray he will be ok, and I pray for all of you with an AVM. Thank you for your kind words also Kim, I am checking out that cyber knife location website. have a good nite, Noelle

Kim Palmer said:

Noelle,

I am not far from and am a native of Chicago. I am sorry to hear that your son-in-law has this condition to contend with. I was 22 when I was diagnosed and am now 42. My AVM is still active and inoperable. Tell him to not give up, to keep searching for the brighter things in life. He has a bumpy road ahead of him but it is not impossible to ride through it, just wear a seat belt and hold on to those who are loved.

The Cyber Knife may be a better option for him as it is a much more percise form of radiation delivery. Dr. John Adler of Stanford University created it by using technology from the auto industry and NASA. It can irradiate where the Gamma Knife cannot. I think there is a Cyber Knife in Oak Lawn.

Go to this site and look for locations.

http://www.accuray.com/

I’ll pray for him.
Kim