Friday, November 29, 2013

VNS Surgery

*Surgery pictures below*

Tuesday I had surgery at the University of Utah to repair my Vagus Nerve Stimulator.  We got up there around 12:30pm, but I wasn't wheeled into surgery until around 3:45pm. 

The first thing I was impressed with was how many people were there to help with the surgery.  It's a teaching hospital, so a resident put in my IV.  He was very nice, so it made up for the fact that he had to stick me twice.  I also met the actual anesthesiologist.  I met my surgeon, which I wasn't expecting.  He told me that it would be a little bit of an exploratory surgery, which I knew.  They wouldn't know if the lead on my Vagus Nerve (which talks to the battery and tells it to work)  was broken until they actually opened me up.  The surgeon said it was very rare for a lead to break, and that depending on how bad my vagus nerve is, a side effect could be my voice changing, and becoming hoarse.  This was news to me, and became a  concern since I am a school teacher.  Oh well, hoarse voice or seizures....I'll go with the hoarse voice.

My neurologist was there, the surgeon's assistant, and at one point, inside the little pre op room, there were about 10 people inside, all for me.  I felt special!

If the lead needed to be changed, the surgery would take about 3 hours because they would have to use microscopes and small instruments to get all the scar tissue out from around the lead.  I've had this lead since 2002.  30 minutes into surgery my family received a call that that lead was broken, and they would begin the delicate process of removing all the scar tissue so that they could replace the lead. 

Below is a picture I found on the internet of what the surgery looks like, along with a description.  It would've been awesome to actually see my surgery, but I think it's cool anyway!

The images show the microsurgical pattern of electrode removal and reimplant around vagal nerve. (a) Old electrodes (a conductor through which electricity enters or leaves something such as a battery or a piece of electrical equipment) enveloped in fibrotic tissue, (b) piecemeal removal of electrodes and silicon spiral tether, (c) vagus nerve anatomical preservation, (d) new electrode (lead)implantation.

When I woke up, I was VERY aware of the fear of my voice sounding different, so I began talking and didn't stop!  The first thing I said was that I had was dreaming about grading a Shurley Grammar test!  They all thought it was funny that I was dreaming about work.  I noticed right away that my voice sounded nromal, so I was very grateful for that.

The doctor said that surgery went very well.  My vagus nerve is very strong.  My magnet hasn't been turned on yet, because my vagus nerve needs time to heal.  It will be turned on in about two weeks.  I've also been told that I'll be able to be taken off of some of my medications and have them switched out with safer medications.  That's always a happy thing to hear.  I can't say enough wonderful things about the team I had at the U of U.  They were so kind, accomodating, and the survery I receive in the mail is one that I can't wait to fill out!

Sleeping the first night at home was rough.  Wednesday, the 1st day after surgery, was also rough.  My body didn't like the pain medications, so I wasn't able to keep anything down.  Luckily Wednesday night I slept on my favorite chair in our living room, so I was able to get up by myself, and actually sleep!  And Thursday I was able to enjoy Thanksgiving dinner, and look forward to leftovers the whole weekend!!

Nick has been awesome during this whole thing.  While busting his butt getting Thanksgiving dinner ready on Wednesday and Thursday, he was also taking care of me.  And so many people from church have been sweet, bringing meals and offering to help with Brandon.

My scars as of Wednesday morning.  They're now covered with gauze because let's face it, it looks scary!

Now I'm focusing on moving my arm more, and standing up straight.  I've been walking around like The Hunchback of Notre Dame!  I'm left handed, and this was done on the left side of my body, so that's been fun.  Last night when I started typing this post, my left side began to hurt.  But I need to practice lifting my arm up because I really want to be able to go back to work on Monday!

I'm grateful the surgery went well, and that it's over.  The past 3 months have been rough.  Pregnant in September, miscarriage in October, surgery in November.  I'm done now!  The scars will take a long time to completely heal, but the seizures will stop, so I'm thrilled for that! 

Thanks to EVERYONE who has helped in any way; food, child care, prayers, emails, everything!

Saturday, November 2, 2013

Miscarriage Taboo

*Caution:  Not for the faint of heart.  And for all of my friends who are currently pregnant, or have recently had a child, I mean no offense to you, this is just raw emotion and my way of dealing with this*

For those who missed my last post,  I just miscarried at 7 weeks.  Read the article here for all those details.

I was talking to my sister the other day, and she brought up a really good point.  Why is it that miscarriage is considered such a taboo?  Women wait until the "safety" zone of three months to tell people their exciting news, but if you don't make it that far, we are expected to keep it a secret and deal with it in silence.  We have to continue on with our daily lives, like nothing has happened, as if we can really concentrate on the task at hand, when all we really want to do is get into our pajamas, crawl into bed, and cry.  Sometimes, like in my case, people did know that I was pregnant, but it's an awkward conversation for people to have with you, and many times you don't have the emotional strength to talk about it out loud.  So I'm choosing to talk about it here where I can cry while I type, and no one has to have an uncomfortable conversation with me!

Before Brandon was born, I had a miscarriage at about 6 weeks.  I didn't even realize that I had had a miscarriage and had a D&C at the hospital.  I don't remember much about that because I wasn't very healthy at the time.  My seizure disorder effected my memory for years, so that experience is pretty much forgotten.  This time however, the situation is VERY different.  I am in complete control of my faculties, my memory is completely intact, and we waited a long time to try this again.  This time I feel the pain of loss, and the frustration of having this happen a second time.

I knew exactly when I was pregnant.  I had planned on surprising Nick, but as soon as I saw the test I went screaming into the bedroom because I couldn't hold it in!  I sent email subscriptions to all the baby magazines to send me weekly updates about my pregnancy.  I had written on the calendar on my phone when every 4 weeks had passed during my pregnancy...all the way to my due date.  Nick and I were reading from a "pregnancy week by week" book that we used when I was pregnant with Brandon, and I was planning on buying the updated version of that book this weekend.  I knew exactly how I was going to announce on Facebook that I was pregnant and couldn't wait!  I had even already started looking at baby furniture, since we have none, and baby bedding!  Instead, I had to unsubscribe to those emails, which was not easy.  For some stupid reason they make it MUCH easier to subscribe than to unsubscribe.  I trashed all the internet links to anything baby related that I'd saved, and I erased all the dates I'd put on my phone calendar, and put the baby book away.

Have you ever noticed that when you want something that you can't have, it seems like everyone else has it?  Facebook has been nothing but a reminder of our loss, as everyone is announcing either their pregnancy or delivered babies.  All the stupid ads on the side of my Facebook page have to do with babies, since that's been what I'd been looking at lately on the internet.  And it seems like everyone at work is announcing they're pregnant!  It's like pouring salt on the wound.

I was given 3 choices to "complete" this miscarriage.  Another D&C, I could let it pass on its own, which could take up to 2 weeks, or I could take a medication that would complete this in 48 hours.  I choose the medication.  I want this done so that I can move on.  I did some research on this medication and became sad.  Not only is this medication used to "complete" a miscarriage (also known as a spontaneous abortion, a term I can't stand), but it's also given to women who want to have an abortion.  You have no idea how horrible I feel taking this medication.  I know that I'm not taking it to induce an abortion, but the very fact that it's used for that reason makes me sick.

So last night I curled into my favorite chair, and prepared for what was about to happen.  The medication is supposed to contract my uterus to expel what is left of the baby, so I was also given some pretty heavy pain pills.  I didn't actually go into labor with Brandon, so I had no idea what to expect.  An hour after taking the medication, I wanted to scream.  I didn't, because Brandon was upstairs playing.  All he knew was that mommy wasn't feeling good.  I've now discovered that contractions, even the smallest ones,  suck!!  I took some of the pain medication and continued doing anything I could to keep my mind off of what was happening.  I painted my nails, watched CSI:  Miami (love that show!), and took deep breaths.  I was afraid to go to the bathroom because the medication is also supposed to make me bleed, which is something I wasn't interested in seeing.  I'd already watched myself bleed 17 days ago when this mess began, I really didn't want to see it again.  Luckily that part hasn't been too bad, and I was able to sleep through the night.

This morning I'm taking the last 2 doses of the medication.  I'm cramping again, and I simply hope this is over soon.  I'm looking forward to letting this go and moving on.  I can't make decisions now about whether I want to do this again...I'm too emotional, too scared of it happening again, and more time needs to pass.  I do know that now that I'm the magical age of 35 I have another whammy against me, as pregnancy over 35 can tend to lead to higher risk, which I already am due to my seizure disorder!

I don't know what the future holds, but I do know this:  I am very grateful for my friends and family who have supported me through this.  Your kind words and encouragement have meant a lot.