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Linda lives in Redlands, ca. She has three children Jade age 22, Juan age 20 and Ryan 18. She is a correctional officer. At the age of 42 she accomplished the academy for the department of corrections. It's very grueling and very physical, and people younger than her were dropping out like flies! She loves to exercise and dance!! She loves her children and family very much and is always there for them. My mother has always been very independent and a "go-Getter". She was a single parent to us, and we were ALWAYS provided for even when money was very tight. I love my Mother more than anything in this world and I believe in her. She is the strongest person I know, and if anyone can survive something like this, it's her.
13 June 2008
My Mother Linda Bennett was diagnosed with a pretty good sized AVM a little more than a year ago.
About 5 years ago, she had a very terrible headache. She thought she was going to die. They took her to the emergency room and they sent her home with a cortisone shot. "It's just a bad headache". A couple of years later she started to get a severe shooting pain from her mouth area to her brain. She went to the dentist, thinking it was her teeth. They did a root canal. Didn't solve the problem, they then did ANOTHER root canal, of course didn't solve the problem. So she went to her primary care Dr. He said she seemed to have the symptoms of Trigeminal neuralgia. So they sent her for an MRI and found nothing. He sent her with a prescription for Neurontin, which is a nerve blocker by my understanding. SO... pain doesn't go away. Her DR refers her to a neurologist, Dr. Cole. He does more pictures and behold she is diagnosed with AVM. He refers to DR. Hsu at Loma Linda University Medical Center.
She goes to meet Dr. Hsu about a year ago. He honestly doesn't make her feel very comfortable. He gives her 3 options:
1. Just live with it, you have already lived with it for 46 years, you may just live a normal life with no rupture!
2. Surgery to remove it, and he's gives her an 80% success rate (which we feel just isn't promising enough)
3. Radiation which he feels may not be the best option for her.
Great; what do you do now? So she goes back to her original neurologist Dr. Cole. He says "let me refer to the world renowned AVM neurosurgeon Dr. Neil Martin at UCLA medical Center" Her insurance approves and she goes for her consultation. She is so relieved! He gives her the news she was waiting for. He tells her that she is absolutely a candidate for surgery and her success rate is 98% with a very small rate for complications. He said she was not and I repeat WAS NOT a candidate for radiation and that she better have the surgery sooner than later. We are relieved as such confidence with this end all be all surgeon! I mean, we were thinking, let's get this surgery over and done with and let mom get back to her life.
So I was married May 2, 2008, to my high school sweetheart. My mother was there and it was a beautiful day. Everything was amazing. And I am ever so glad we did all that before my world was completely torn apart.
May 13, the day before her scheduled embolization, she and I make the hour long drive to UCLA and check into our hotel. We walked around the campus and had pomegranate tea at the coffee bean. Little did we know what lied ahead?
May 14: We check her in for her procedure for her embolization. we say goodbyes and I break down because I'm angry and hurt that my mom has to go through this. My aunt and I wait around the cafeteria waiting for word. Finally around 1pm, the radiologist phones me and tells me that basically the embolization was somewhat unsuccessful. He was only able to block off 50% of her arteries and that it was "far more dangerous and complex" than we imagined. So he was forced to abort and was going to consult with dr. martin on what he wanted to do. Typically you need 75-100% blocked off for the surgery.
We finally see her later that night. She is very sick. She is continually vomiting. Her brain is swelled. Then cancel the surgery and have it tentatively scheduled for next Tuesday may 20th. Meanwhile my mother is in ICU recovering. Mind you Dr. Martin hasn't even shown his face to us once to give us and update or anything! We spent the whole week trying to track him down and figure out what the hell is going on!! So the whole week my mother is vomiting and is very dizzy. We don't know if they are going to go back in and try to finish emboli zing her or if dr. martin wants to go ahead and just do the surgery. WE HAVE NO CLUE! No one is talking to us! We only get guesses from nurses here and there.
Monday, May 19: Everything from what we know is a go. She's scheduled for embolization that day. we are waiting at her bedside and of all people Dr. Martin walks in with this completely blank look on his face and says that he had a chance to look at her angio gram and based on what he saw and how she reacted he's advising against the surgery and she is now a candidate for radiation and as soon as she feels better she can go home. "Even tomorrow, if you feel like it." His famous words. "You can even go back to work soon"... "Oh and we think you even had a minor stroke, any questions?"... He left so fast he didn't even have time to think of any.
Ok what just happened?!?!??! We are all shocked and had to scrap our jaws off the floor. My mother said she felt he was giving her a death sentence. And I never admitted to her, but so did I.
They quickly released my mother on May 21st even though she was still vomiting and still have vertigo. They said that was normal and that would go away in a month or so. I bring her home and temporarily move in with her to care for her. She is not getting better but worse. She has frequent vertigo and vomiting. Finally on Memorial Day weekend she gets pretty bad. But I try my best to aid her. I call UCLA hoping to get a neuro dr. paged and to get advice. They tell me she is an outpatient now and that I would just have to take her to the emergency room. WHAT?!?!
Sunday may 25th. My mom and I had a good day. We stayed in bed all day and watched love stories. Around 5 pm she gets another dizzy spell and wants to close her eyes for a bit. By 10 pm she is SO bad and her dizziness hasn't stopped and she is vomiting heavily. I call 911 and they take her to Loma Linda University Center.
They give her a CT scan and find nothing wrong. They want to discharge her and I beg for them to not send her home. My mom is telling me there is something wrong and I don't know what else to do for her. So they admit her after trying to get a UCLA transport team to pick her up, they don't have any beds available!! Which was good; because in a matter of a couple hours her AVM ruptured she was rushed to emergency surgery!
The surgery was performed by none other the Dr. Hsu... remember him? They didn't think she was going to make it. They just wanted to control the bleeding and then weigh their options but they decided to just remove the AVM right then and there. She made it through the surgery and he said the surgery was very dangerous and no one would have wanted to do it. But he had to. When I asked for a prognosis he said "i'm not giving her much hope".
We didn't get to see her until about 3 am the next morning. We were surprised to hear the nurses tell us she was responding to commands. Squeezing hands and moving her toes. And she continued to do so for about 3 days. And then she just stopped.
She has been in ICU for a little over 3 weeks now and they were hoping after the swelling went down she would come back around. She still hasn't. They are thinking it might be because there is a blood clot residual bleeding that is putting pressure on her brain stem. And when that clot resolves itself like a bruise, and the swelling goes down, she will come around and start to respond.
We were overjoyed to find on Monday she started breathing on her own! She now has a trach because she took so long to get off the respirator. She still has a feeding tube. But she still hasn't responded.
I would like to keep updating her story. It's the only way I seem to know how to deal with the situation. My whole life has flipped upside down and I just want my mom back. She is my heart and my world. I am so lost right now. And i'm wondering if anyone has had something similar happen to them and still come out of it?
Update 24 June 2008
As of my last update on my mom, sadley she has slipped Into a coma. Its weird how the Drs. don't want to use the word, but say "well yes basically she is in a coma". They don't want to pinpoint to us what stage she is in. BUT from what I gather, I think there is still lots of hope. For starters, she is still breathing on her own, she still responds to pain assesment, her vitals are great. But the Dr did mention that the further out from the initial injury that the patient slips into a coma (a month to the day for my mom), the less likely she will be to come out of it. I refuse to give up hope!! Please let me know if anyone has have a similar experience. I just need a lot of input right now because the Drs seem to want to give so little at this point. Thanks and God Bless.
Update 11 July 2008
I am unfortunatley here to let everyone know that my beautiful Mother, Linda Robles Bennett lost her battle to AVM on Tuesday, July 8, 2008 at 1:49 am. She died in my arms as she took her last beautiful breaths. This terrible condition has completely destroyed me. I wish I could go back and tell her not to attempt to treat this with surgery/embolization. But I know I cant live like that. I wanted to keep her so bad, but God wanted her more. Her brain had shut down, and I knew she was ready to go, so I made the hardest decision of my life and took her off the ventilator and ended her suffering. I just wanted to Thank everyone at this site. Everyone gave me so much comfort and hope, even though if there was none. God Bless everyone of you all and I will keep you all in my prayers.
Jade Bennett Salazar
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