Friday, September 28, 2007
a few more shots of my first hospital stay
I would stare at that sign and was so comforted by those words "Special Care". I felt like those nurses really cared about me. I would watch my blood pressure as it would squeeze on my arm automatically every 20 minutes. I think it gave me some sense of control to know what my blood pressure was. Amazing how low it would get during the night. I guess it goes down a lot when we sleep.
My brother Marc stayed with me until 3am in the ICU. I tried to give him one of my pillows but he wouldn't take it. I really think the best words I've ever heard where at midnight my first night of dealing with all this. I was in the ER trying to sleep with a washcloth over my eyes to block out all the trauma going on around me. I hear "I'm Marc Stern and I'm here to see my sister". I will never forget that feeling. The ER can be one lonely place, especially at night and especially after learning I had a problem with my brain that day.
Thursday, September 27, 2007
Thursday's update
Notes from the day
-she's quite tired
-still feels an ache in the leg, but it's a familiar ache, so she's not worried
-the rash is not really getting worse, maybe 3-5% worse than yesterday, but it itches around her neck
-she is staying in bed for now, doing as she's told
Andrea talked to Jennifer at Dr. Martin's office, who answered some of her questions. She said to stay on the 2000 mg for now. Both Andrea's GP & her friend Rob Ashley recommended the same neurologist, Dr. Bill Buxton, and Dr. Martin says yes, do see another neurologist, especially for the Keppra management. Dr. Martin also wants her to have a "functional" brain MRI, in which she's shown flashcards and asked questions. Date TBD.
Other details from Jennifer:
-1-6" of her hair will be shaved
-she'll be asleep during surgery
-probably won't be able to drive for about 4 weeks after the surgery
-prognosis is very good, other than the normal risks of surgery
-does not expect any loss of memory
-just watch in the leg for anything abnormal
-recent trip to the ER does not bump up her appt--same dates
Today Dr. Pat & I hung out at Andrea's house, brought groceries & dinner, worked on the blog, relaxed with the cats, talked on the phone, watched a bit of baseball. All is calm, all is bright.
xo
Stephanie
-she's quite tired
-still feels an ache in the leg, but it's a familiar ache, so she's not worried
-the rash is not really getting worse, maybe 3-5% worse than yesterday, but it itches around her neck
-she is staying in bed for now, doing as she's told
Andrea talked to Jennifer at Dr. Martin's office, who answered some of her questions. She said to stay on the 2000 mg for now. Both Andrea's GP & her friend Rob Ashley recommended the same neurologist, Dr. Bill Buxton, and Dr. Martin says yes, do see another neurologist, especially for the Keppra management. Dr. Martin also wants her to have a "functional" brain MRI, in which she's shown flashcards and asked questions. Date TBD.
Other details from Jennifer:
-1-6" of her hair will be shaved
-she'll be asleep during surgery
-probably won't be able to drive for about 4 weeks after the surgery
-prognosis is very good, other than the normal risks of surgery
-does not expect any loss of memory
-just watch in the leg for anything abnormal
-recent trip to the ER does not bump up her appt--same dates
Today Dr. Pat & I hung out at Andrea's house, brought groceries & dinner, worked on the blog, relaxed with the cats, talked on the phone, watched a bit of baseball. All is calm, all is bright.
xo
Stephanie
Happy smiles with the 'all clear' diagnosis!
Dr. Fine (not his real name) just gave the all-clear on the CT scan, x-rays and blood tests. She's going home!
All OK after another trip to the ER
Just wanted to let you all know that Andrea is doing fine, but she's tired.
This morning she felt pain in her leg again, along with fatigue, weakness that was so bad she could hardly stand up, a bit of a rash on her neck and torso, lightheadedness like she was going to faint, and some shortness of breath. After calling around to her doctors and waiting awhile for her calls to be returned, she went to the ER with Andy, Coley & Dr. Pat; Ashleigh & I met her there a bit later. They did a CT scan of her head which showed no bleeding, an x-ray of her lungs which was clear & clean, and blood tests that came back negative/normal. After consulting with Dr. Aaron Cutler there, we still had to wait 2-3 hours for her discharge papers to get her home, but she was in good spirits throughout. She often mentions how fortunate and blessed she is to have caught this early, to have such incredible support from her family and friends, to have good insurance, to have such a great job, and so on.
-Stephanie
This morning she felt pain in her leg again, along with fatigue, weakness that was so bad she could hardly stand up, a bit of a rash on her neck and torso, lightheadedness like she was going to faint, and some shortness of breath. After calling around to her doctors and waiting awhile for her calls to be returned, she went to the ER with Andy, Coley & Dr. Pat; Ashleigh & I met her there a bit later. They did a CT scan of her head which showed no bleeding, an x-ray of her lungs which was clear & clean, and blood tests that came back negative/normal. After consulting with Dr. Aaron Cutler there, we still had to wait 2-3 hours for her discharge papers to get her home, but she was in good spirits throughout. She often mentions how fortunate and blessed she is to have caught this early, to have such incredible support from her family and friends, to have good insurance, to have such a great job, and so on.
-Stephanie
Saturday, September 22, 2007
from Jerry Stern's first email to friends & family
Hi to friends and relatives:
Ruth and I rushed out to LA on news that Andrea was undergoing tests for certain symptoms that worried her physician, including dead-numbness in her leg. Her physician wisely -- and thankfully -- sent Andrea to ER for various tests, including a brain MRI.
The MRI showed an aneurism, which was diagnosed as AVM.
In ER, Andrea had a bad reaction to Dilantin, which was given as an anti-seizure medication. After that delay, she was then sent to UCLA medical center at Westwood, one of the best in the world for Andrea's condition.
Numerous tests later, including an uncomfortable angiogram, it appears that she needs surgery. There is a large area of her brain on the left side that shows numerous abnormal spots that reflect arteries (capillaries) that are not functioning. My understanding is that these have to be closed...
It appears that the easier procedure to embolize the defective capillaries is not within the treatment plan, or if it is, it will be an adjunct to surgery...
The medical service here has been beyond great, and we have full confidence that she's in great hands.
Andrea has the greatest partner and friends in the world. Marc, who was here, said that if they did a documentary on her partner and friends, no one would believe that such a group exists. They are amazingly bright, articulate, organized, loving and loyal. Marc came in as he was about to leave San Diego for NY and spent the night (before we arrived ) at Andrea's side.
Andrea is upbeat...
Jerry
Ruth and I rushed out to LA on news that Andrea was undergoing tests for certain symptoms that worried her physician, including dead-numbness in her leg. Her physician wisely -- and thankfully -- sent Andrea to ER for various tests, including a brain MRI.
The MRI showed an aneurism, which was diagnosed as AVM.
In ER, Andrea had a bad reaction to Dilantin, which was given as an anti-seizure medication. After that delay, she was then sent to UCLA medical center at Westwood, one of the best in the world for Andrea's condition.
Numerous tests later, including an uncomfortable angiogram, it appears that she needs surgery. There is a large area of her brain on the left side that shows numerous abnormal spots that reflect arteries (capillaries) that are not functioning. My understanding is that these have to be closed...
It appears that the easier procedure to embolize the defective capillaries is not within the treatment plan, or if it is, it will be an adjunct to surgery...
The medical service here has been beyond great, and we have full confidence that she's in great hands.
Andrea has the greatest partner and friends in the world. Marc, who was here, said that if they did a documentary on her partner and friends, no one would believe that such a group exists. They are amazingly bright, articulate, organized, loving and loyal. Marc came in as he was about to leave San Diego for NY and spent the night (before we arrived ) at Andrea's side.
Andrea is upbeat...
Jerry
Angiogram shows surgery as best option
Andrea had an angiogram today, which showed that surgery (rather than inserting metal coils via angiography) would be the best option for treating her AVM.
Friday, September 21, 2007
from Hugh Borax's first letter to Jerry & Ruth
Before I give you the latest update on Andrea, let me tell you that the neurosurgeon (Dr. Aaron R. Cutler) considers her prognosis to be good.
It appears that she will be spending the night in the emergency room, not because there is an emergency, but because there is no room in the ICU for them to monitor. (They also don’t happen to have any rooms at the hospital, but even if they did, Dr. Cutler would prefer that she be monitored.)
In consultation with his boss, Dr. Neil Martin, he believes that the hallucinations she has been experiencing are actually seizures caused by the Arterio Venous Malformation (AVM) that was detected in today’s MRI. Preliminarily, he does not believe that her leg falling asleep today was related to the AVM. The reason for this is that the AVM is located in the temporal lobe section of her brain on the left side of her head. The left leg would be regulated by the right side of her brain. He is unfamiliar with Klippel-Trenaunay [a vascular condition Andrea has also had since birth, affecting her left leg], and does not know how it might be related to this vascular lesion (AVM).
The plan is for Andrea to have an angiogram tomorrow morning and possibly for them to “embolize” the defective blood vessels. (Embolization is a way of occluding (closing) one or more blood vessels that are doing more harm than good.) Andrea was most likely born with this condition. If Dr. Martin feels that the embolization is not going to be sufficient, then most likely he will elect to do surgery. I know it sounds scary, but Dr. Martin happens to be world renowned for the treatment of AVM through this specific type of surgery. The recovery time should be a matter of days and the pain is “not that bad” in the words of the doctor. Much of this is because the brain has no pain receptors...
It appears that she will be spending the night in the emergency room, not because there is an emergency, but because there is no room in the ICU for them to monitor. (They also don’t happen to have any rooms at the hospital, but even if they did, Dr. Cutler would prefer that she be monitored.)
In consultation with his boss, Dr. Neil Martin, he believes that the hallucinations she has been experiencing are actually seizures caused by the Arterio Venous Malformation (AVM) that was detected in today’s MRI. Preliminarily, he does not believe that her leg falling asleep today was related to the AVM. The reason for this is that the AVM is located in the temporal lobe section of her brain on the left side of her head. The left leg would be regulated by the right side of her brain. He is unfamiliar with Klippel-Trenaunay [a vascular condition Andrea has also had since birth, affecting her left leg], and does not know how it might be related to this vascular lesion (AVM).
The plan is for Andrea to have an angiogram tomorrow morning and possibly for them to “embolize” the defective blood vessels. (Embolization is a way of occluding (closing) one or more blood vessels that are doing more harm than good.) Andrea was most likely born with this condition. If Dr. Martin feels that the embolization is not going to be sufficient, then most likely he will elect to do surgery. I know it sounds scary, but Dr. Martin happens to be world renowned for the treatment of AVM through this specific type of surgery. The recovery time should be a matter of days and the pain is “not that bad” in the words of the doctor. Much of this is because the brain has no pain receptors...
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