I haven’t been on lately things have been a lil crazy. Zach my son had another brain bleed in mid Jan and was rushed by life flight to Stanford. It started out as a real bad headache that just wouldn’t go away so I took him to our primary and they gave him a shot of toradol and it made it worse so she said to go to the er and I did. At the er they did a ct got him started on a iv and pain meds. Next thing we knew they was calling Stanford. From then Stanford was calling the shots and they said transfer everything was happening so fast that the only thing we had was the clothes on our backs and my back pack that had my laptop and chargers for it and the cell phones. Mind you that we live at least 7 to 8 hrs away from Stanford so there was no way to get clothes my meds nothing. We were on our way not knowing what was going to happen when we got there how bad it was. As i was riding in the cock pit of the plane looking at the heavens above and looking down as we flew over our small town I was praying and crying. Once there he was rushed to nuero ICU was there for 24hr then went to step down nuero floor. The mri showed that the bleed stopped on its own and that avm is more in the center of the brain not the right temporal lobe and deep so no surgery yet. We go back here in march for follow up and then in 6 months to see Dr. Stienburg. I don’t know what is to come for my son and his AVM. Im just thankful to have him home with me. I pray that we don’t have to go through this again. This is his second bleed. They was talking about coiling it. PS my son is not a very good patient lol he continues to have headaches we r just using vicodin to help with it.
Being at Stanford is one of the top notch places. If anyone can fix it they can.
That team will always be special in my heart–when Chari’s (wife) AVM showed up in 91, the DRs said “learn to live with a ticking time bomb in your head, it’s too big to operate, etc”. Fast forward through several (4 or so) embolizations, two proton beam radiation, THEN DR Steinberg said "Ok, it’s small enough now, I can operate and get it all."
When we heard the news “It’s gone!” we were elated. Her last surgery was about 1998 and just prior to Christmas this year, I wrote them yet another long Thank You note for all they did for us.
Best wishes,
Ron, KS
I am so sorry to hear that Zach has had another bleed. I know the pain is very extreme. If his current pain medication is not helping I'd suggest getting ahold of his Primary and asking them to either try something else or refer him to a pain management specialist. I know it's a tricky balance they are trying to achieve, not wanting to over-medicate, so as not to mask another bleed (but believe me there isn't enough pain medicine in the world to do that) and to give adequate relief, as much as can be expected based on many factors. I'll be praying for Zach. Ask him to try and be as quite as he can and to sleep as much as possible. Sleep I think is the number one healer when it comes to brain injury.
Kim
I can’t thank you enough for pointing me in the right direction bless u 
Ron, KS said:
Being at Stanford is one of the top notch places. If anyone can fix it they can.
That team will always be special in my heart--when Chari's (wife) AVM showed up in 91, the DRs said "learn to live with a ticking time bomb in your head, it's too big to operate, etc". Fast forward through several (4 or so) embolizations, two proton beam radiation, THEN DR Steinberg said "Ok, it's small enough now, I can operate and get it all."
When we heard the news "It's gone!" we were elated. Her last surgery was about 1998 and just prior to Christmas this year, I wrote them yet another long Thank You note for all they did for us.
Best wishes,
Ron, KS
Standford is most certainly a top notch facility.
Very sorry to hear of your son's condition and hope that it improves very soon.
Best Regards,
B
Kim ty my son is 18 its hard to hold him back from doing things im like hun let your brain heal plz and he is like mom im ok I need to do this it scares the you know what out of me. 2 weeks ago he went back to playing basketball once a week and no there is not enough pain meds to help with the pain they had him on sooooooo much and the night befor he was released they had him on moriphine that helped he was able to sleep for the first time in like 6 days. I will talk to the doctors about pain management ty for the prayers God bless.
Kim Palmer said:
I am so sorry to hear that Zach has had another bleed. I know the pain is very extreme. If his current pain medication is not helping I'd suggest getting ahold of his Primary and asking them to either try something else or refer him to a pain management specialist. I know it's a tricky balance they are trying to achieve, not wanting to over-medicate, so as not to mask another bleed (but believe me there isn't enough pain medicine in the world to do that) and to give adequate relief, as much as can be expected based on many factors. I'll be praying for Zach. Ask him to try and be as quite as he can and to sleep as much as possible. Sleep I think is the number one healer when it comes to brain injury.
Kim
Ty from what i’ve heard the are number one and for that fact im also being seen by the nuero department
Beth B said:
Standford is most certainly a top notch facility.
Very sorry to hear of your son's condition and hope that it improves very soon.
Best Regards,
B
WOW! What a traumatic time Zach and… you and your family have been through. My mother was life flighted a few times from strokes… I can empathise with all that goes through your mind at that time. My prayers are with you, Zach.
IN MY THOUGHTS AND PRAYERS. HOW LIFE CHANGES SO QUICKLY. HOPE ZACH IS FEELING BETTER AND THE HEADACHES ARE BETTER CONTROLLED. THE BLEED DEFINATELY CAUSES HEADACHES SO WITH MODERN DAY MEDICINES THERE IS NO REASON FOR HIM TO BE UNCOMFORTABLE. AS A NURSE I KNOW, KEEP STRONG AND ZACH SENDING YOU STRENGTH AND COURAGE -HANG IN THERE BUDDY THINGS WILL GET BETTER.
OMG…how frightened you all must have been!! I just can’t imagine…my thoughts and prayers are with you all. Hopefully the pain meds are working and you are feeling much better by now Zac. Please keep us posted.xxx
Hello Sarah,
My thoughts are with your family and your son, I too have had two bleeds (one at 22 and the other at 28) and know how scary they can be. My bleeds were very similar as the stopped on there own. Have the doctors talked about any other treatments? I did Gamma Knife in Sept 09, it's a long process but due to where my AVM is it was my only option at this time. I will be thinking of you and your son! Tell him to keep his head up high and try not to let this consume his life. The way I saw it was I lost my trust in my AVM every time I had a bleed and it took time to regain it again eventually I did and unfortunately I had another bleed. It took me time but again was able to regain that trust. It is a challenge however I am sure your son and the family will be strong enough to get through this. You will all be in my prayers.
Melissa
Sarah,
So sorry to hear Zach's had another bleed! All the emotions that go with this are overwhelming and exhausting, but hang in there.
Zach is in EXCELLENT hands with Dr. Steinberg, he's one of the VERY BEST drs! He's among the EXCEPTIONAL neurosurgeons who will do right by your son.
Dr. Steinberg is my NS too and I TRUST him IMMENSELY.
Take care,
Patti
My prayers go out to you and Zach.
Take care,
Debbie
I pray for you all, my Melissa (30 year old daughter) had two confirmed bleeds and a couple of smaller one's which forced the doctors to finally take action (gamma knife). Lucky for us we are only 45-60 minutes away from the AVM center in Toronto, I couldn't imagine 7-8 hours...as a parent I know exactly how you feel and my heart goes out to you.
Her AVM was detected by fluke..this openned up a whole new world (2001) for us..it changed our lives , we're always on high alert .. I know about the fear, the stress and the sleepless nights we've had...it was first described to us as a headache like no other headache and stiff neck..I remember like it was yesterday and Mel for the first time felt it and we knew it was a bleed.. once in Triange all we needed to say is AVM and Mel is put into an ambulance and transfered to the AVM Center...we're hoping the gamma knife is the silver bullet..right now only god knows the outcome..I wish you and your family the hope and strenght which is necessary to fight this...
Crazy doesn’t seem to describe what you all are going through. It is wonderful to see that so many people know that Stanford is such a great hospital and Zach is in the right place to be treated!
They love and support from everyone is wounderful I don’t know what this journey will bring. Im just thankful that we are not alone and for the time being he is home and trying to get back to normal we all are. The tx they have put on the table while he was there was to coil it. Im sure Dr. Stienburg will know when it’s the right time to do so.
You are right Sarah, you're not alone!
Lots of good, caring folks here thinking of you, Zach & your family, sending well wishes, good thoughts and prayers.
And yes, Zach's has a GREAT neurosurgeon in Dr. Steinberg - he's in the BEST hands.
Take care & please keep us updated when you are up to it.
Patti
sarah said:
They love and support from everyone is wounderful I don't know what this journey will bring. Im just thankful that we are not alone and for the time being he is home and trying to get back to normal we all are. The tx they have put on the table while he was there was to coil it. Im sure Dr. Stienburg will know when it's the right time to do so.