My First Re-bleed Scare

At 2:30 a.m. on Tuesday, February 18, I woke myself up coughing, almost like I was choking.  It took me about 10 minutes to calm myself down and drink enough water to get rid of the feeling of having something stuck in my throat.  I managed to fall back to sleep until about 4 a.m.  I woke up to my tummy just churning and a little bit of heartburn.  I struggled to fall asleep and eventually went out to sleep in the recliner to see if a more upright position would help calm my heartburn.  By 4:45 a.m. my stomach pains and heartburn were so intense that I finally gave in and took some tums.  By 5:30 a.m.  I had to run to the bathroom.  I puked as forcefully as water coming out of a fire hose for probably 10 minutes.  I had sweat rolling down my face after I finished.

As you have read previous to this post, my neurologists have told me that nausea could mean a rebleed.  So, when I started vomiting I also instantly started to panic.  The entire time I threw up I was trying to put the least amount of pressure on my head and stress on my body as I could.  Do you have any idea how hard it is to try to teach yourself how to throw up calmly and nicely?  Seriously, it is impossible!

Once I calmed from the nausea, I began to shiver.  My body felt like I had just done an hour worth of kickboxing.  I was absolutely spent.  I got in the bath tub and relaxed for 45 minutes.  The entire time I repeated physical and mental assessments on myself.  Are my extremities or my face any more stiff or tingly?  Is my vision any different?  Do I feel dizzy?  Do I have a headache?  Do I still have memory?  Can I formulate words?  Over and over and over again.

Patrick woke up and found me in the bath tub.  I could instantly see the worry on his face so I explained how I had been feeling.  I didn't have to express my fears of a rebleed to him.  I could tell just by looking at him that he knew what I was thinking and he was thinking it too.  He ended up calling in to work to stay with me, got the girls ready for the day, and took them to daycare.

The entire time he was gone my stomach just churned and churned.  I couldn't even keep water in.  I would either be puking or pooping every 30 minutes.  Plus, I had heartburn.  I remember thinking that, at some point, there would have to be nothing left in my system to get out and this would stop.  Of course, every time I would feel the urge I would try my damnedest to hold it in. If I wasn't sick from a rebleed to start with, that didn't mean the the intensity from which I was puking couldn't have caused one.  It was useless though.  It felt like someone was stabbing me in the stomach and stirring the knife at the same time.  I continued to panic about new symptoms and I also started to panic about Pajamie.  How was she handling the way I was feeling?  I just sat on the bathroom floor for three hours until I finally felt a bit better at 11 a.m.  I had finally stopped throwing up but my diarrhea was still lingering around although it was not as frequent.  The only thing I ate all day was a chocolate malt. 

The remainder of day I spent panicking and stressing over any new symptoms I had.  I was constantly assessing myself.  The only thing that I could really feel a difference of was slightly more stiffness on my left side.  I was tired, but everything else seemed normal.  I frequently pushed on my belly to get Pajamie to move.  Every time she kicked, I about cried because so much relief would rush over me.

Patrick and I agonized over whether we should go to the ER.  My doctors had all told me that I would for sure know if I was experiencing a rebleed.  I tried desperately to remember how I felt in October compared to how I was feeling.  In October, my symptoms started after I felt a quick pop in my head followed by a near black out and feeling like I was going to faint.  From there, my symptoms got worse everyday.  I would start tingling in one place and it would eventually spread every day thereafter.  I also just felt off.  The best way I can describe it is being motion sick.  Like when you get off a ride and you just kind of feel like you are floating and spinning in your own body.  Your stomach doesn't hurt, but you just feel tipsy.  This time all I felt was stomach pain and heartburn.  I didn't feel any of the motion sickness type feeling.  My doctors said nausea could mean a rebleed but I was also still human, and pregnant, and susceptible to just plain getting the flu.  I just didn't know and because of that we decided to wait and see if any new symptoms formed.  We gave ourselves until Friday, which was my next OB visit at Covenant.

I was obsessed with reassessing myself over the next two days.  I still experienced nothing new except maybe a bit more stiffness on my left side.  I was completely mental though.  It was almost like I was creating that "extra stiffness" in my head because I was on such high alert.  I still had loose stools about once per day and crazy heartburn, but felt fine other than being a basket case mentally.  By this time, Jaelyn and Linden had also begun to vomit and have diarrhea.  This is terrible to say, but I was somewhat glad.  If they were sick too, than maybe this really was the flu.  Ever since I have had my stroke I experience a little more tingling and stiffness on my left side when I am fatigued.  I had not been sleeping because of the way I felt and from needing to take care of the girls through the night.  My body was just shot.  I was recovering from a stroke, I was 33 weeks pregnant, I hadn't slept in nearly three days, and I had a killer flu virus working through me (hopefully).  I was hoping my extra stiffness was just from my body being worn down.

I decided that if this was a rebleed, than I was going to start to get informed about what was next.  Brain stem surgery.  I had only researched two articles up to this point.  When I sat down at my computer this time I decided that I needed to find some positive research.  I needed to know if there were successful cases like mine.  I was freaking out enough.  I didn't need to add more on top of it. 

So, in the Google search box I typed in "Successful brain stem surgeries."  The results popped up and about three down was a blog named, Windless Dandelion Wishes.  The description said "recovering from an "inoperable" brain stem cavernous malformation surgery."  Bingo.  I began to read Lisanne's blog and it was like she was reading my mind, right down to her symptoms and how she felt emotionally.  She was positive and a fighter and that's what I wanted to read about.  Her situation was damn near the exact same as mine and she had surgery to remove it.  She was 11 months post-op and was doing wonderfully!  Yes, it was hard to read about her struggles and limitations pre- and post-surgery.  BUT, the important thing I took from it was that if I went in to surgery expecting these things, stayed positive, and worked hard, I would eventually be okay.  I just needed to be willing to do a little bit of time in Hell.  Better yet, she had other patients stories like ours on her blog that were also having the surgery successfully.  She had a Facebook page called, That Brain Fart, and was also the creator of a brain stem surgery survivor support group page on Facebook.  This was exactly what I was hoping to find when I started researching.  

I reached out to her and the others immediately.  I asked them if they had repeat bleeds, and if they did, how they knew.  The overwhelming response was that they for sure knew.  Symptoms became immediately much more intense and noticeable.  That eased my fears a bit but I was still on high alert.  I wasn't feeling myself quite yet so I continued to research.  Lisanne and many of the others had their surgery performed by Dr. Spetzler of the Barrow Institute in Phoenix.  My in-laws had found him already before our Mayo appointment.  At that time I was happy with what I heard and did not carry through with getting a third opinion from Dr. Spetzler.

But my scare changed my mind.  Patrick and I decided to send my records to him for another opinion.  Iowa City has been very slow with this so we are still working on it.  I will keep you posted on what he says about my condition.  I want to be clear and explain to you that my desire to get another opinion does not mean that I am going to pursue surgery at this time.  I am still holding out on the hope that I may never bleed again.  I am not going to have my brain cut in to just based off of the fear of the possibility that it could happen again.  Yes, it would be incredible to have my CM removed and know that I would never have to wake up and worry about it again.  There would be no more, "Is this the day?"  But, I am not ready to face all of the pain and limitations that I will experience from surgery unless I really need it.  There is just way to much unpredictability associated with surgery.

However, this scare made me realize that if it did happen again, I needed to be informed and prepared.  I want the best surgeon there is cutting in to me.  I want to have the best chances I can after surgery.  Even more so, I am not willing to experience bleed after bleed after bleed.  If I bleed again, I will have surgery.  I would rather get it over with and just know, "Okay, this is what I got for the rest of my life."  I do not want to keep getting more and more symptoms with each bleed and live in pain my whole life.  That does not sound like fun.

My research had helped me at least feel like I had more control over the situation.  I was still on high alert, but was feeling a bit better.  Then, I got sick again early Friday morning.   We went to my OB appointment and I discussed my symptoms with her.  She believed that I had the flu and that my heartburn was the major culprit for my sickness.  She put me on Zantac for my heartburn and gave me some nausea medication just in case.  She told me to call by Monday if I wasn't better or go to the ER over the weekend.  I never took the nausea medication but I did take the Zantac.  Oh my goodness!  It was a miracle worker.  All my stomach pain and everything disappeared.  I started to feel much better, although I was still convinced that I was experiencing a little more stiffness.

On Monday, February 24, we had a neuroopthamology check-up.  On the way down I finally told Patrick how scared I was.  I felt better, but I didn't feel as good as I had.  I explained to him that I didn't want to be stupid this time.  Meaning when I had my first bleed I tried to rationalize or justify all of my symptoms.  It got so bad that I ended up in ICU!  I didn't want to be that naive this time.  I knew better.  We discussed whether or not we should go to the ER or the neurologists while we were in Iowa City that day.  We never came to a conclusion.  I think we were both so scared that we didn't want to know the answer.  If we didn't know for sure, than it wasn't happening, right?

My eye appointment went well.  It took three hours and my eyes were exhausted when it was over though!  I did not move down a prism, but I was close so they let me take a 20 home since I wasn't scheduled to return until May 19.  I am currently on 25, and started with 30.  I am very blind and nearsighted naturally so that is what is preventing me from going down in prism strength quicker.  I simply need it since my eyesight is so poor.  But, my eyes are learning.  If I look at something long enough and really focus, I can usually see singular.  Often times these days, I wonder if I am still seeing double or just blurry.  Patrick constantly tells me that my eyes look better and are tracking more naturally.

We did talk about available options that I have if my double vision never went away.  I could opt to have eye muscle surgery once I hit a year after my stroke.  This would realign my eyes back to normal, stop my double vision, and allow me to wear contacts again.  It is an outpatient surgery and recovery is very quick and painless much like Lasik.  I could not have this done until my vision was stable for a period of time though.  It would also be permanent so if I bleed again it would have to be done again.  At this time, I do not think I will ever pursue this option.  My eyes look pretty close to normal and I just really do not want to put my body through an unnecessary surgery, even if it is low-risk.

My other option is to have my prism ground in to my glasses.  This is expensive and also permanent to my lens of my glasses.  It would be completely invisible to others and look like a normal lens.  With my stick on prism others can see it if they look hard enough at my glasses.  I can pursue this option as early as 6 months after my stroke.  I really like this option and I will choose this one if I need it.  However, I am going to wait until I hit a year after my stroke before I do anything permanent.  My eye has healed so well so far that I just want to wait it out and see how much better it will get first.

After my eye appointment, I was feeling the same if not a bit better.  My energy was starting to come back again and I still wasn't experiencing any new symptoms.  It had now been a week since I first got sick.  Patrick and I decided that I didn't need to go the ER.

Skipping to present day for a minute:  I definitely feel like I had the flu.  Once my flu symptoms stopped, the girls got better, and I started to get more sleep, all my "extra stiffness" disappeared, and I feel great again.  But, that an entire week was just as scary, if not more scary, than the week I had my stroke.  Because if I ever bleed again it won't just mean a hospital stay and therapy; it will mean brain surgery and life forever permanently altered.