Hello..I have seen this website and hesitated to join but here I am now. Maybe I haven't looked hard enough, but I don't see anyone who has maybe came close as to what my boyfriend has experienced. Let me tell you a little about him. On Nov 14th 2010, a Sunday morning, Oscar collapsed and started convulsing. I immediatly called 911 where they came and took him to a nearby hospital. That hospital determined that he was bleeding in his brain and he needed to be airlifted to a major hospital in Houston's medical center. From there we were told he suffered a bleed due to a ruptured AVM in the brainstem. We had no idea what that was and after much research, finally knew. Never did he know he had this. Every once in a while he would complain of a headache after working out or being lightheaded, but that was it.
He was sedated most of the time with two drains coming out of his head to drain the CSF fluid that was building up in his brain. (he eventually got a shunt due to the CSF buildup) Every once in a while he would be taken off sedation and he would move around. His left side was strong, but his right was weak. By Thanksgiving, it was like a miracle..he was coming to and opening his eyes, smiling, mouthing I love you, i miss you and moving his right side more. He was blowing us kisses, giving hugs and he even scooted over in his bed so I could lay next to him :-) About a couple days after the Thanksgiving holiday, Oscar went in for an angiogram and they found vasospasms. It was devastating because here we was a couple days earlier he was so responsive and alert and now this. It was a major setback. He had to go through a vigourous cycle of meds to help w/the vasospasms. After the spasms had stopped..Oscar was non repsonsive and became comatose..We havent seen the Oscar he was since Thanksgiving. He has since been to an LTAC where he was neglected and got infection one after another. We demanded he be taken back to the medical center where he is now and recovering. He is responding a little now, waving hello, some facial expressions and wiggling of toes..but he can not mouth words. (he has a trache) It's like he is awake, but not really, you know? Doctor's tell us it's a very long recovery process and I know it's only been 3 months but it's just been so hard for the family and I. His insurance has denied him twice for rehab which is so sad and fustrating, he needs the rehab to start his recovery..but the only place they will pay for is a nursing home. A nursing home will not help him at all.
Sorry for the long entry, I just wanted to make sure I got all or most of Oscar's story out there..
Hi Rosaura. I am so sorry that you and Oscar have to go though this medical horror. Yes...Rehab is IMPORTANT and sooner the better. Have you contacted the Insurance Commissioner in TX? Maybe he/she could help you.
I had some problems with my insurance as everyone does. I remember that they would not pay for a shower chair since and this is a quote...bathing is a luxury. Luckily, the chair was inexpensive.
Hi Rosaura. If you are looking for anyone in the Houston area try this link...
Of course, you can type in Katy...Woodlands etc.
Sometimes it helps to know that you are not the only one in the city dealing with an AVM!
Wishing you the best–sounds like you are a strong advocate for him–he needs it.
Hi Rosaura, My thoughts and prayers are with you and Oscar.
You may want to try to talk to an advocate at the hospital. Sometimes they can help or at least advice you of what steps to take, for him to get the rehab. that he needs. Also.. I would find out from the insurance co. why they denied him. Sometimes things aren't worded properly for them to approve it or the code was wrong. I've ran it to that a few times.
Hello Rosaura, my heard goes out to you both…this is so traumatic. Oscar does need rehab and I would try my hardest to keep at them to get him to rehab. I had 10mths of rehab, twice a week and truly, it was SO good for me. When I started, I couldn’t talk at all, (except for THE word) and now I can talk. write, read (slowly) etc. My situation was different to Oscar’s (all AVM’s are different) but slowly,slowly, he will get better I’m sure. He has God on his side and a great woman with him, so do your best to be strong (not easy I know) but we have lots of wonderful people in this site and we are SURVIVORS!! Take care and my thoughts and daily prayers with both of you.xx
Hi Rosaura. Welcome to the group you will be happy you joined. I cannot offer any advice about rehab but it sounds like Oscar really needs it. If I were you I would read the fine print on your insurance and know exactly were you stand. Sometimes you got to take control and if you feel you are getting the run around “report them” and or talk to an attorney. Don’t let the push you aside when you need them.
Wishing you and Oscar all the best and a speedy recovery.
Rosaura Cantu said:
Oscar’s mom has tried on several times to get a reason for denial. She was promised a letter to be sent to her and an email and she hasn’t recieved neither. Our insurance co (Oscar and I work togther) is a small company funded (our company we work for) insurance co, so my guess is they just don’t want to foot the bill for rehab. It’s so sad, we pay all this $ to insurance copmanies and when you need them, they are not there for you…
Ben Morrell said:
Hi Rosaura, My thoughts and prayers are with you and Oscar.
You may want to try to talk to an advocate at the hospital. Sometimes they can help or at least advice you of what steps to take, for him to get the rehab. that he needs. Also… I would find out from the insurance co. why they denied him. Sometimes things aren’t worded properly for them to approve it or the code was wrong. I’ve ran it to that a few times.
Hi Rosaura, I am sorry for the struggle you and your Oscar have been through…as I read throught some of these messages I cannot understand how a family can cope with the fear and stress of a situation like this and then have to do battle with insurance companies to finally get much needed care to the love ones. It makes me angry that profit is more important than people. My system may have some negatives but I can assure you my daughter with an AVM for 10 years has never had to worry about insurance dollars or quality of care… I wake up every day thinking how is my daughter feeling today, she had Gamma knife to a large AVM 1.5 years ago…we are at the half way mark…she has had 2 bleeds and fully recovered (before Gamma Knife)…that’s all we focus on…the hope that our loved ones are safe and protected…not when the insurance runs out… may God protect you all…