Meet Sara

A few weeks ago I wrote a blog post called, Shine Your Light.  It was in response to an email I had received from a mother of a woman who has the same condition I do.  I have been in frequent communication with her daughter ever since. 

Meeting her has been a Godsend for me.  She lives in Des Moines, Iowa which is very close to where I live.  How bananas is that?  As you can imagine, our conversations are about some pretty heavy material that I think leave us both spinning and comforted all at the same time.  It is so easy to talk to her.  I can write one sentence and without needing to explain it, she immediately understands every underlying emotion, fear, struggle, and worry that accompanies it.  It is freeing in a way to be able to really honestly express everything without needing to worry about how it is affecting the person your speaking to.  There is nothing she doesn't understand because she is living it too.

I tell people all the time that I began this blog with ultimately two goals in mind.  I wanted it to serve as a lasting journal of my recovery for my family and I and hoped that it would help someone else with my condition.  I am not sure if people even read my blog, but that doesn't matter. All that matters is that I have helped one person.   If I had not chosen to share my story publicly I would not have ever been able to help anyone.

Please meet Sara.  She is beautiful inside and out.  She is 29 years old and living with a cavernoma malformation in her brainstem.  Her CM bled for the first time in February 2014.  The exact location of her CM inside the brainstem is still unknown due to some blood residue left around the area.  She will be having a second MRI in the upcoming weeks that will provide more clarity.  She sent her scans to Dr. Spetzler who recommended surgery and gave her a positive prognosis for her recovery after surgery.  On Monday she went to Mayo for a second opinion and met with Dr. Lanzino.  He told her to wait to see if it bleeds again and asked her to get another MRI so he could have a clearer picture of the area.  So, she is left with the agonizing decision to have surgery or wait it out.  The amount of decisions and gravity that they each hold when determining to have surgery are overwhelming and life altering.  Needless to say, Sara has jumped on the wacky roller coaster I have been riding for the last seven months.

Here is Sara's story, written by her personally.

A few days before Valentines Day I noticed that my right foot was kind of numb. I didn’t think too much of it and would just make comments here and there to my husband about my stupid foot falling asleep. After a few days of this the numbness progressed up to my lower leg, and then my entire leg and then the next day I noticed my arm was numb until it went all the way up to the back of my scalp on the right side. 

I went and saw my family doctor and she didn’t think too much of it. She told me I was the big puzzler of the day and said it wasn’t anything I should be worried about. I’ve had a vitamin B12 deficiency in the past and she thought that may be the cause so they did some blood work and sent me on my way. They called with my results on a Monday and said my blood work came back fine and that the numbness would likely go away in one to two weeks, but if it didn’t then I should come back in. That Wednesday afternoon while I was at work I noticed something a bit strange with my vision. I started to panic a bit and asked one of my co-workers/friend to take me to the Emergency Room. My husband met me there and right away we got a CT scan that revealed I had some kind of tumor or formation on the left side of my brainstem. At that time the doctor called it a meningioma. We were in absolute shock. 

I was then taken in an ambulance to Mercy hospital downtown Des Moines while my husband followed in his car. When I got there it was pretty late at night (maybe 9 or 10) and right away they had me get another CT scan, but this time with the contrast in my IV. Within the half hour to an hour it took to get to the downtown hospital and get another test the bleeding had grown. Based on that they decided to put me in the ICU for the night. The next morning I had an MRI that revealed it was a cavernous malformation with a 1 cm bleed. They kept me in the ICU for another night and had me get an angiogram the next day to confirm it was a cavernoma. The neurosurgeon told us that I’ve had the cavernoma my whole life and it went almost 30 years without bleeding and could go another 30 before it would bleed again, if at all. He also told me that my symptoms should subside within 2-4 weeks and I could go back to work in 1-2 weeks. 

We were of course ecstatic to hear this. We really liked the neurosurgeon and were very impressed by the staff at the hospital, but unfortunately they had only seen a couple cases like mine and didn’t know just how long it was going to take for me to heal. Once I got home after three days in the hospital things went downhill. My numbness got significantly worse. When trying to explain how it felt I would say that I felt like if I fell into a pool my right side would sink to the bottom because it felt like a ton of bricks.  My vision got much worse and within a week I was seeing double. I also had facial drooping on the left side of my face and had some difficulty swallowing for a brief time. The very worst point was close to 2 weeks after I got home from the hospital. I experienced the first migraine of my life. I was in bed with my head throbbing. It was so bad I was getting physically ill. 

The hardest thing was feeling so alone and so helpless. The doctor’s nurse and physicians assistant kept telling me to call them if I had more/worsening symptoms, but every time I called they would just tell me that there was really nothing they could do because they couldn’t do surgery due to the location and that was really the only solution. It’s an all or nothing thing, either you have brain surgery or do nothing at all. So to myself I kept thinking “then why do you keep telling me to call you if I have more symptoms."  

Anyway, they did set me up with an appointment to see an ophthalmologist, which is where I received my first prism. I remember not being able to contain the smile on my face when he put that prism up to my eye and I could see one image again.  At that point in time the Ophthalmologist thought that my eye would eventually heal on its own. We were told I had a 75% chance of it going back to normal without surgery. Again, we were very happy to hear this. A few weeks later I noticed my prism wasn’t working as well so we went back to the Ophthalmologist and discovered my eye had gotten significantly worse. It went from a 10-15 degree turn to a 35 degree turn in toward my nose. At that point the doctor said it would not heal on its own and I would need surgery in 6-9 months to get it corrected. That was hard news to take, but  I had to keep remembering that while I was struggling getting around and HATED the way I looked, it was temporary and could eventually be fixed.

From there we continued doing lots and lots of research. My mom has been such a blessing, spending night after night researching and tagging different articles about cavernous malformations. My mom had found something online regarding the Barrow Neurological Institute and saw they had a 2nd opinion program where you could submit your scans and pay $100 to get a 2nd opinion. We thought, why not? We assumed this would give us confirmation that indeed, surgery was not the way to go for this condition. Boy were we wrong. I had a full blown panic attack while at work when I received the recommendation from Dr. Spetzler telling me I should have surgery. Everything I had heard and read up until that point had said surgery was not an option at this point in time and yet this doctor was telling me I should have this scary surgery. 

After receiving that opinion we decided to make an appointment at the Mayo Clinic with Dr. Lanzino to try to work everything out and to help us decide what we should do. We of course continued researching surgery and surgical outcomes to aid us in making this decision. Over time my numbness started getting a bit better. I was able to write a little bit more and my typing speed picked up. I also started walking a bit better on my own, wasn’t limping and didn’t need someone to hold on to. I had more problems with my prism so we were thinking finally, it’s starting to improve, however, when we went back to the Ophthalmologist we discovered that my eye had gotten worse again. I’m now at a 40 for my prism, which is as high as they go.

We went to Mayo on Monday to meet with Dr. Lanzino. While we haven’t received his official opinion because he wants me to get another MRI to see the exact location of the cavernoma before he does or does not recommend surgery, he made it pretty clear that he would not do surgery at this time. My cavernoma is located in the middle of the brainstem so he would have to cut through healthy tissue to get to it, which could cause me permanent damage. He suggested waiting to see if I have another bleed and then if I did look into doing surgery at that time in hopes that the cavernoma would come to the surface and make it safer to resect.

So that’s where we are. We haven’t made our official decision yet, but hope to very soon.

 I pray for you everyday Sara!  God bless you and your wonderful husband!