ONE YEAR TODAY!!!!!!

Today was the surgery one year ago. I am now off Keppra for 4 months with no seizures. I think it was that Keppra that was continuing to give me seizures. I also think that AVM was related to my blood circulation disorder in my left leg - www.k-t.org. (Klippel - Trenaunay Syndrome)

I remember all those doctors saying it takes a year to recover from this. I have to say, they were right. It really took me time to fully get my energy back. Now I have to get back in shape but hey if that is my biggest problem, all is ok. 

I still feel like the luckiest gal in the world. I am going back to UCLA hospital today but for a different reason. I am joining the committee for fund raising on brain research. That feels like the most perfect thing to do today. I have a lot to do now as far as being a person who went through brain surgery. I have no idea what all of that is really, but I feel a lot in there about to motivate me. One thing I want to do is volunteer to drive someone who cannot drive on their own. What an experience in LA that was. Thanks to my friend Dr. Pat I actually had fun not driving as we made my errands and shopping into regular outings. But what do people do without their own Dr. Pat? 

Today is huge for me. It's like now I can say it. I had brain surgery. Somehow the anniversary solidifies that it actually happened. 

I have a lot to do now.

update

all is going so well. i was dealing with being more tired and needing to rest constantly to avoid a seizure (de ja vu hallucinations or waking up from sleep in a state of amnesia). i always felt this was because of the drug i was on, keppra. it's a sedative and i could not get my full energy back. it was scary to have to rest or have these seizures. 

my wonderful neurologist allowed me to try to come off this drug starting two weeks ago. i have two more weeks to go of slowly decreasing it. so far i only feel better and more awake and energized. 

if this continues to go so well i will be able to stay off this drug. i cannot wait to feel my new healed brain without the avm they removed and without this drug. maybe i'll be really good at math like my brother is.  july 21 should be my first day drug free. i am so ready!!!!

An AVM Story - multimedia slideshow by Stephanie Howard

IT IS OFFICIAL

It's official!! My surgeon's office called and I am done with this. It is over. No more tests on my brain and it will not grow back. I never need to check for this again.
I was on a walk when they called and all of a sudden the palm trees never looked so beautiful. The beach air, the pink sky, every step is sinking into my body.
I have never felt as calm as I do in this moment.
I am breathing in a new way now.
Love,
Andrea

Progression!

HELLO! It's been a little while now. I am thrilled to report that I feel back to normal. These two pics show the progression of my left eyebrow and forehead being able to move again. The left side is not as strong yet as the right side but it's getting there.

It's now been 3 months since my surgery and I think I feel as normal as ever. Physically my body is back to where I was. Emotionally I am feeling ready to deal with all of this as the shock has now worn off or is wearing off.
The best news is that I had a follow up angiogram last week and the report is that my brain is now clear. I do think that means I am done with this but I will confirm that with my surgeon when he can talk to me. They are busy people but I was told that I can completely trust the opinion of the doctor who did the angiogram. The report is all clear!

I am still on anti brain seizure medication, Keppra, but thankfully I don't feel it anymore. I take an EEG in April and hopefully show no brain seizures going on. Then I can slowly try to come off Keppra and hopefully stay off it forever. The possibility is that the AVM pushed against my brain and caused permanent damage which will have the brain seizures (hallucinations for me) continue. Those would not be fun to feel again.

Right now Keppra is the only issue I still have on this whole thing. I feel completely lucky and blessed and what a miracle this entire situation has been for me. If remembering to take a drug twice a day for the rest of my life is the worst of it, I'll take that any day.

I do know that I have a lot to say about all this. The words are not clear to me yet but I can tell I want to do something with what I've been through. Perhaps it's about talking to others who have to go through this. I am feeling out all the options right now on where to do service with this. I feel like I have a lot to do.

I will update again. Thank you so much for caring. That caring I feel from everyone is the strength I carry inside myself.
BLESS!
Andrea

My new Head Shot

me now

it's so funny because people expect me to have a shaved head but instead i look normal. out in the world they have no idea that i just had brain surgery. this is what my scar looks like now. they managed to shave my head in a way that covers the scar right up. in a way it feels very weird to go through effort to show this when it still feels so obvious inside of me. weird for 3.5 weeks after this surgery to look like a normal version of me.

the only difference right now is that i can't move my left eyebrow up, or my forehead (like i've had botox). that may come back they say. i wonder how different this experience would be if they still shaved everyone's heads like they did a few years ago. i think i'd be in shock.

The 33 Staples (that are now out)

Andrea at home!

Stephanie talks with Andrea at home:

I'm almost back!

I can finally say I am almost back. This is amazing. No more drugs, exercise walking every day, and I am feeling ready to get back to work next week.

Just amazing to finally feel like myself again.
It was a hard couple weeks after the surgery but then all of a sudden I am quickly returning to myself each day.
My staples were removed yesterday and tomorrow I get to wash my hair!! That will take a lot of time and I have two friends coming over to condition and comb my hair out. I don't know if we'll be able to finish that in one evening.

I am feeling very lucky and in good shape. I'm starting to feel how lucky/grateful/blessed that I am.

Talk soon,
Andrea

adjusting

hi everyone.
i can finally turn on my computer and focus with a bit of clarity.

i am thankful. i say that without 100% feeling it yet. i thought all i would care about is how grateful i'd be. i expect that feeling to take over, but i guess i'm not there yet. i do think i will end up that way. i should be so grateful to have my life saved, etc.
i'll get into that when the time is right for that.

for now, i am adjusting. i am finding my strength again. i have done some walking today and yesterday. i am figuring out how much medicine to take to stay out of head pain. my body feels strange. my mind is mostly dealing with pain. i have staples in my head that get removed next wednesday. it is very strange to look at a bald strip and see staples. my hair is such a mess but i can't touch it yet. that has to wait until next friday. 9 more days.

i think overall i'm in shock about all this. feels way too large to really deal with. even though i knew it was coming for a month it is still shocking. now, i hope to get through this pain as quickly as possible and then i can appreciate what's been happening. it's such a long process and i need to be patient.

i am feeling slightly human for a few days now. feels good to be here. i am eating regularly now and sleeping all night. i think i'm doing pretty well for one week after brain surgery. please continue to progress and thank you for making me stronger every day. maybe for now that is what i'm thankful for. the steps feel small for now. that is where my focus is.

i made friends with my first nurse from santa monica ucla emergency room. she was so good to me and we became friends. i am now in touch with her and she will be looking in on me this friday. how lucky am i to have bonded with my nurse and now i get a personal visit. i feel so well watched right now. i haven't been alone yet. that is a funny change to not have been alone. i am sure that will change soon enough. i know life will look different as i get through this.

thank you for hearing me.
love,
andrea

Heading Home!

from Hugh, 8:30 a.m.

I just got a phone call from Andrea's dad, Jerry, and she will be heading home in a few hours. She had a very good night last night and although her parents are a bit apprehensive, ANDREA is very excited to be getting out of the hospital. NOW she will be able to get some real sleep without them waking her every few hours.

The bandages are off her head, and she's been walking with help at the hospital.

Jennifer, Andrea's ER nurse, will be going over to Andrea's today as well, which is a relief.

From Rinat, 9 am - It's All Positive

She is doing extremely well.

Juliet spent the night in a chair in her room so someone was with her. Her parents relieved her at around 5 a.m. this morning.

She is extremely alert and mentally sharp.

The doctors say she's doing great.

They are going to do an angiogram right now, which is standard to make sure the entire avm has been removed.

Her father "said she is doing as well as we could have hoped for."

She's a little uncomfortable as she is hooked up and wired up to a whole assortment of machines, but she's coping with it.

It's all positive.

She does however, need her sleep. I know a lot of people want to visit her, but her parents really insist that she needs to rest and make no effort at all. She will be home hopefully by the weekend where she'll have a longer recovery period and need the company more at that point, so their suggestion (and hers) is to hold off till she gets home.

Thanks for all your prayers and support. It's been overwhelming to read all the loving emails from everyone. I've forwarded them all to Andrea so she can feel the love and prayers directed towards her.

x

Dr. Martin says surgery went "perfectly"!

Hugh's 7 p.m. report:

The surgery was a success.

Andrea's parents have been in to see her, and have reported that she's her old irascible self.

Dr. Martin said that everything went perfectly, exactly as expected.

She's coherent, alert, & recognizes the people around her.

She's resting and everyone is quite relieved.

Great news all around!

That's probably all for tonight--more to follow.

One more day

I think I'm ready. This wait has been tough. The last few days I have felt more anxiety and have tried a few calming drugs. I think that is helping. Today I went for a gentle swim and that seems to help more than anything else.
I am so ready to get this behind me. I want to start my recovery process. I don't know what kind of pain or exhaustion I will feel but right now I don't even care. I want this surgery over with. I want to come through it safely and have everything go well. That is all i want right now.
While waiting in the office to meet the surgeon last week I was so blessed to meet a 38 year old athletic woman who had this surgery one month ago. She looked fantastic and alive and healthy. She is already playing volleyball. She, more than any report I have read, has given me such hope. She has stopped by to visit me and will do that again tomorrow night before the surgery. She is my role model. She gives me something to look at and see my healthy self in one month. Thank you Valerie.

I hope to do that for someone, someday.
I thank you all for checking in and helping me through this. The care I have received from so many good people keeps me company in a time when I know I could be feeling such loneliness.

The next blog post will be a report on my surgery. I wish I could write it now and how well it will have gone. I can see the words in my mind though.

Prayers prayers prayers please. Time to hand this over...
Love,
Andrea

a check in

hello sweet people.
about 2 weeks away from surgery now. i have a mixed feeling of - hurry up already and then - please let's not do surgery.

i have been very busy for the last week or so with many tests. 3 more brain mri's, another eeg, and donating blood for myself. i also may have had another seizure although they aren't positive if it was one. i woke up with numbness again in my left leg and right hand. they brought up my medication, keppra, in case it was. that keppra has me wiped out. some days it is hard to stand up and walk. other days you would never know other than a slight foggy sensation in my head.

so far all of what they are learning from these tests is that nothing has changed (thank G-d), and it is exactly what they thought it was. the most relief i had lately were the results of a functional brain mri. i had to wear goggles and look at words and images for maybe an hour + half in an mri tube. this was not good. i found the goggles to ruin any sense of peace i had in the other mri machines. i guess i need the ability to see out to not feel claustrophobic. it took every bit of determination i had in me to not move and let the panic take over. also the idea of starting over from the beginning motivated me to keep still.

the result from this test means i will not be awake during surgery because my avm is not dangerously close to any part of my thinking brain. that calms me as much as any info possibly could.

i do want to pass on two bits of info that i didn't realize before. one is that it's important to have great health insurance coverage. if it is not a full covered plan then it cannot get better after something happens. i am so grateful that i had good health coverage through an hmo with blue cross. so far i have landed in the best care and it will mostly all be paid for. i was told if i didn't have this coverage i never would be able to upgrade.

the other info i want to share is how my memory was getting worse and my mind was playing a few tricks on me. who would ever know to go to the doctor after having auditory hallucinations? i didn't know. i thought i was stressed or having some psychic experience, or confusing information i would someday comprehend, or that i was just going a little nuts. this is not easy to explain but the quick version is that starting in february (pre baseball season) i started to hear lines from a movie that i've heard too many times. i had it memorized and it would replay in the voices that i was listening to. it was often around baseball. the announcers would start saying these words that i knew from my past but could not identify exactly. i knew what they were about to say and they would then say it. strange beyond words, frightening and i really assumed it was something i would never understand. i knew i was imagining because i'd go back to that baseball game on my tivo and those words were not there. this happened with the same set of lines maybe 8 times in the passed 6 months. i now know that these are most likely seizures. i have not had them since being on this anti seizure medication.
i figure this is good for people to know. i never would of thought of going to the doctor because of this. i assume i felt embarrassed. i don't feel that way now because they stem from this avm and they fit into this puzzle that will now save my life. the blessing for me was that i used my hmo plan and went to the doctor when i did have a question.

good positive thoughts now as we continue to surrender to this unknown life saving process called a craniotomy.
thank you for being with me now,
andrea

info from the neurologist

hi everybody,
i cannot even begin to talk about how comforted i am with all of your well-wishes and prayers. i can say with a new sense of reality how i am now leaning on your prayers. while i surrender into this foreign world of medicine, i trust that i am in good hands.
i had an encouraging appt today with a neurologist who is now "on my team". i truly have a sense that i will be ok. although this surgery is more of an intense procedure that i'd ever want to go through, all of my instinct and faith tell me i will make it through this and will be even better on the other side of it.
this is my full report from the neurologist. i'll be in touch soon and there may be more updates on all these tests i still need to take before the surgery.
thank you beyond words,
andrea

prognosis: "definitely very good"

dr. william buxton was patient with our questions and did a lot of the poking and prodding tests.
he wants to test me for a pinched nerve bc there might have been a diff between my two legs sensitivity. and this would possibly explain the numbing in my leg.

more blood tests to verify a borderline high propensity to clot.

another brain eeg for more specific testing (on the seizures, i think).
mesial temporal lobe (brain) mri with contrast to get another look at it. (different then the functional brain mri that dr. martin requested, different times and different buildings).

later on, after surgery we will do an emg to test for a pinched nerve. this could actually make a lot of sense and answer why my leg went numb and why i have lower back pain. hugh just reminded me that a possible pinched nerve may have saved my life. holy cow. (possibly causing the numbness which made them check my brain for a stroke).

the spinal mri was clear. very good news.

he said to start taking calcium and vitamin D for bone issues due to keppra.
he approved the keppra dosage. (the rash is almost gone)

the location of my avm could affect memory, hearing, processing, smell, taste and language. possibly anxiety and depression.
he was not sure what is actually affected by my avm.

he had an optimistic view of this surgery and said "they take things out of the temporal lobe all the time and this dr. is one of the two best dr's for this in the world".

he thought i'd be in the hospital for about a week. i check in at 5:30am the morning of the surgery. i am scheduled for the first surgery of the day at 7:30am unless they have an emergency come in.

he thinks i should keep my brain active now with "crossword puzzles".

risk of stroke right now for me is less than 1 %. (this calms me because i was afraid i was more at risk)

i am not to take a bath right now, showers only.
nothing that will thin my blood.

he was not familiar with my leg's KT so any link will have to be determined later.

my energy level was good this morning although now i'm a bit tired and will rest for the day. again, i'll walk later.

Andrea and Chica 2

Andrea and Chica

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.