Need help plz!

Im so irriatated with the doctors right now. We was told a year ago yesterday that my son Zach who was 17 had AVM we have went through referals this last was denied cause UCDAVIS in California didn’t have room to take him. My son is having new symptoms and his primary just brushed it off. Zach gets real bad headaches well over this past weekend he had one in the early morn he got up to go potty and he had blood coming out of his eyes and a bloody nose I told him you should’ve called me he told me ma what could’ve you done the hospital wont do a damn thing no one will. I need help so I can help him. Im tired of no one helping him. Just because we get state medical shouldn’t matter. But it seems to be. I needed to vent.

One alternative: Contact the Neuro clinic at Stanford Hospital. Look for Dr Steinberg or Dr Marks. Last I knew they were the co-directors of neurosurgery at Stanford. Steinberg is the cutter and Marks is the Embo guy. Ask to speak with either of their “nurses”–the gals are really RNs, but more administrative people–they are the ones that REALLY run the show. Ten yrs ago it was Mary and Theressa–they are super to work with. [If you speak w/ Mary, tell her Ron from KS said you could help them! No, I really don’t have any pull with them, but they know me.]

Their team takes a total person view of treatment. They also have access to radiation at Loma Linda (they are somehow connected and work together–I’m not sure how).

Ask to speak with someone cuz your son has a AVM that needs to be looked at NOW, not sometime in the future. Try to get your hands on any tests / scans that UCDavis ran and hand carry them to Stanford.

If expense of lodging is an issue, ask to speak to a social worker. They have a condo for long term patients/families that is 1/2 the price or less of motels, but it’s space available lodging. It’s right off campus, so it’s convenient if he has treatments.

If it were my son, I’d be on the phone 10 minutes after you see this note. My son’s had multiple brain surgeries (not at Stanford and not for an AVM) and I know the pain of seeing your son suffer.

I hope this helps. Pls let us know how he does. God Bless

Ron KS

Ty you so much I will look into this

Ron, KS said:

One alternative: Contact the Neuro clinic at Stanford Hospital. Look for Dr Steinberg or Dr Marks. Last I knew they were the co-directors of neurosurgery at Stanford. Steinberg is the cutter and Marks is the Embo guy. Ask to speak with either of their “nurses”–the gals are really RNs, but more administrative people–they are the ones that REALLY run the show. Ten yrs ago it was Mary and Theressa–they are super to work with. [If you speak w/ Mary, tell her Ron from KS said you could help them! No, I really don’t have any pull with them, but they know me.]

Their team takes a total person view of treatment. They also have access to radiation at Loma Linda (they are somehow connected and work together–I’m not sure how).

Ask to speak with someone cuz your son has a AVM that needs to be looked at NOW, not sometime in the future. Try to get your hands on any tests / scans that UCDavis ran and hand carry them to Stanford.

If expense of lodging is an issue, ask to speak to a social worker. They have a condo for long term patients/families that is 1/2 the price or less of motels, but it’s space available lodging. It’s right off campus, so it’s convenient if he has treatments.

If it were my son, I’d be on the phone 10 minutes after you see this note. My son’s had multiple brain surgeries (not at Stanford and not for an AVM) and I know the pain of seeing your son suffer.

I hope this helps. Pls let us know how he does. God Bless

Ron KS

Bleeding from the eyes and nose could be the “new symptom” that will make the doctors prioritize him a little better. Those are not ordinary symptoms. He has to be seen soon.

Since he has seizures, too, you can contact the local Epilepsy Foundation to get a case manager who will advocate for you. You can find the info to call a California EF office here: http://www.epilepsyfoundation.org/aboutus/AffiliateLookup.cfm

Ditto Ron, KS!!! and don’t give up the fight, Sarah.
http://med.stanford.edu/profiles/Gary_Steinberg/.

If your medical coverage only includes UC affiliated hospitals, then try UCSF.

Best wishes,
Patti

http://www.aans.org/Patient%20Information/Neurosurgical%20Patient%20Stories/Patti%20Gilstrap.aspx

Sarah,

Two articles you may be interested in when you get a chance to read:

http://news.stanford.edu/pr/91/910715Arc1255.html

http://www.sfgate.com/cgi-bin/article.cgi?f=/c/a/2006/06/11/CMGEMIS9JK1.DTL

Take care,
Patti

Well Ron from ks I would like to send you a BIIIIIGGGGGG hug!! Ty looks like Stanford here we come WOOHOO!!! Don’t know when yet got to gather all his test and paperwork get the referal done and we will be on our way and it’s coverd by medi-cal evan better. I was able to give my son hope again that it will be taken care of. We are also going to get tested for HHT, and the bleeding from the eyes could be cause by too much preasure in his head from the headache no matter what its a sign of hemerrage. God bless you all!!!

So glad to hear you’ll be going there. Dr. Steinberg’s a GREAT dr. and has done 3 of my 4.

All the best,
Patti

sarah said:

Well Ron from ks I would like to send you a BIIIIIGGGGGG hug!! Ty looks like Stanford here we come WOOHOO!!! Don’t know when yet got to gather all his test and paperwork get the referal done and we will be on our way and it’s coverd by medi-cal evan better. I was able to give my son hope again that it will be taken care of. We are also going to get tested for HHT, and the bleeding from the eyes could be cause by too much preasure in his head from the headache no matter what its a sign of hemerrage. God bless you all!!!

Hi Sarah,

Dr Steinberg won’t remember me, but tell him the name “Charissa” or “Chari”–bet he remembers! She’s the same age as Gary, and he kept telling her “You are too young not to get this fixed!”

Those folks are all special to us.

Ron, KS

Ron I really did feel like they cared and that is the first time in a year that I had felt that way. I called our primary today and set a appt for first thing monday for he was not in today to get the paperwork faxed down Stanford. My son also produces extra spinal fluid however he doesn’t have water on the brain. His AVM is deep in his right temporal lobe.

Ron, KS said:

Hi Sarah,

Dr Steinberg won’t remember me, but tell him the name “Charissa” or “Chari”–bet he remembers! She’s the same age as Gary, and he kept telling her “You are too young not to get this fixed!”

Those folks are all special to us.

Ron, KS