My Second Opinion

On December 30, we headed to Mayo for my second opinion.  Patrick had called on Friday afternoon, got us an appointment, got all of our paperwork transferred,and informed insurance of the change.  That man never ceases to amaze me and he is my rock.  I was at home crumbling and he was navigating his way through the storm on a mission.

If you have ever tried to get in to a see a neurosurgeon, you know that it is very difficult.  You usually have to schedule 2-3 weeks out.  So for us to get in 1 business day after we called to a world renowned surgeon and hospital, was a miracle.  Not only that, but Dr. Lanzino was going to meet with us in between surgeries.  Are you kidding?

On the way up, I watched Grown Ups 2.  It helped keep my mind off of things.  It also gave me some alone time while Patrick and his brother visited up front.  I was trying to ignore what was happening.  I knew my situation was life or death.  I knew he was going to tell me everything I had already heard.  It was my hope that I would have my questions answered professionally.  I prayed that I would like him better because I really didn't want the neurosurgeon from Iowa City cutting in to me.  The only thing I feared was that he would tell me that I was inoperable.  That was the only news that I could hear that would make this situation any worse than what it was already.  

Both of Patrick's brothers and our sister-in-law came to the appointment with us. They showed up with notepads filled with questions and a recorder.  After all, they had some experience dealing with numerous doctors when their mother was fighting breast cancer.  They understood the severity of the situation and knew how to best be prepared.  I, on the other hand, didn't bring a thing.  I was so out of my element.  But, I also had so many questions racing through my mind the previous four days that I didn't need to write them down.  I had been a wreck but in that moment when I was talking to the doctor, I knew I would have my game face on.

We checked in and within five minutes were taken to the back room.  Keep in mind, we were meeting Dr. Lanzino in between surgeries.  So, we were taken back to an out-patient room rather than his office.  We met his resident assistants first.  I told them my story and they did the normal neuro assessments on me.  No more than five minutes later, Lanzino walked in with his scrubs on.  He was probably mid-fifties and for coming from surgery, he was very relaxed.  He introduced himself and shook all of our hands.  He asked what had happened and how I was doing.  He actually listened and asked me questions.  Can you believe it?!  He actually cared.  I instantly liked him.

Here is a brief  summary of the appointment.  Keep in mind that the shock of my condition had worn off.  During my Iowa City appointment I was overwhelmed by feelings of loss and fear.  I had four days to accept this as much as I could before this appointment.  I was ready to face my condition and surgery.  I was focused and attentive the entire time. Dr. Lanzino was also in between surgeries.  He answered two phone calls from the operating room while we were meeting with him.   

Q. Can you give us your synopsis of my condition.  How severe and time sensitive is it? 

(As he pulls up my scans)  You have a cavernoma malformation in the Pons of your brain stem.  It is on the right side and near the front, meaning on the outside, of the brain stem.  That is much better than having to go through the brain stem.   It has, however, started to wrap around or mingle with your healthy brain tissue which is what will make surgery difficult.  The Pons controls all bodily functions.  You are very lucky and seem to be doing extremely well.  If you were to bleed again, you could suffer additional small deficits, severe deficits, or only lose what you have gained back from this one.  Cases like these are very rare and the surgeries are very risky.  We will not know how severe your deficits will be from a bleed or surgery.  We can only assume there will be some.  Cavernomas are not like angiomas or aneurysms.  They bleed slowly and with less force.  They do not burst like an angiomas or aneurysms do.  So, if you started experiencing symptoms you would be able to get to the ER and transferred up here in time.  The size of the bleed and your symptoms at that time will determine how quickly we move on surgery.  That is not something we can predict.  Many people bleed numerous times before they have surgery.  Some never do have surgery.

I had already learned more about my condition at this point than I did in my previous appointment.  He explained it so professionally and calmly that even though we were discussing something serious, I felt at ease.      

Q. We were told by a previous neurosurgeon that I am a ticking time bomb?  Is that true?

Absolutely not.  It is true that it could bleed at any time again and cause deficits.  But people do not usually die from cavernomas. 

In an instant my worse fear was washed away.  Yes, this CM could really damage me, but to know I wasn't going to drop dead at any minute was incredibly reassuring.  

 Q. How will I know if it bleeds again?

(with a smile and a nod)  You will know.  You will just know.

This didn't help me at all.  My neurologists had told me that I had evidence of dried blood on my scan which meant that I had bled prior to October 25.  I didn't know then.  How would I know?  He seemed so confident that I would know so I just trusted him.

Q. What will we do if it bleeds again?

If you start experiencing symptoms again go to the ER immediately and call my office.  You will have plenty of time to get transported here.  Do not wait to go to the ER.  Take your symptoms seriously and do not try to rationalize them again.

Okay, slap on the wrist and point taken.  It was once again reassuring to know that I would have time to make it to Mayo if I bled again.  

 Q. Is there anything we can do to prevent it?

Nothing that you did caused it and nothing that you will do will cause it again.  Let me guess, you weren't doing anything strenuous when it bled this time?  (I nod no)  Exactly.  Many people come in saying they were watching TV or just woke up feeling terrible.  Obviously, especially since you are pregnant, I do not want you exercising strenuously and raising your heart rate or blood pressure too high because it will aggravate it.  You now have an active cavernoma so the first three months after your initial bleed are crucial.  If you can make it past three months, your chances of another bleed are much less likely.   

Another fear instantly put to rest.  I would no longer have to walk around contemplating whether I could or should do something anymore.  It was completely out of my control.  You would think being so helpless would be even more terrifying, but it wasn't.  This was not something I did to myself.  This little CM of mine had a mind of its own and it was a waste of my time to try to control it.  I just had to do my best not to really upset it!

Q. What are the chances over time?

Within the first three months there is a 20% chance of a rebleed.  After 6 months, 15 %.  After 1 year, 10%.  After two years as low as 3%

This was very interesting to me considering my Iowa City doctor implied that there was a 100% chance my CM was going to bleed again and bleed quickly.  After all, I was a "ticking time bomb cluster fuck."

Q. Is it genetic?

(As he turns to my scans again)  No.  The rest of your brain looks completely clear.  I see no indication that more are forming.  This is the only one you have.  Usually, those with familial cavernomas have several in their brain and many other family members also have problems with them.  This just appears to be an isolated incident.

Fear #3 relieved.  I now had two doctors tell me it was not genetic and my kids were okay.  I do not know how I would have reacted if his answer would have been different.  My CM will affect my kids emotionally, but to know it will never harm them, their kids, or their grand kids physically meant the world to me.  

Q. Was I born with it?

(with a nod and a smile) No.  Some cavernomas are formed at birth.  I do not believe yours was considering the rest of your scan is clear.

Really?  The Iowa City surgeons and the Iowa City neurologists all told me I was.  I am still confused on this and I honestly do not think I will ever know for sure one way or another.  I just find it so hard to believe that I was born with it.  I was so active in sports, exercised at an intense level, and had delivered three kids.  How did it not bleed through all of that?  But, as I have learned, cavernomas can become active or remain stagnant.  Mine might have just decided to have some fun in my head!

Q. Do you think the baby is okay? My OB team in Iowa City are confident that my stroke did not affect her since my heart is healthy and strong. They think that they could give me a strong enough epidural so that I would not feel the urge to push and then basically vacuum the baby out.  My OB in Cedar Falls agrees.  My neurosurgeon in Iowa City told me I had to deliver via C-section.  What are your suggestions for delivery?

I believe the baby is fine and agree with your OB team.  I do not see why you could not deliver vaginally.  Keep in mind that each surgeon deals with ease case differently than another.  One can be more aggressive while another is more conservative.  I can't answer for him.  I do agree that a C-section would be a much more controlled and stable environment to monitor you and that is my recommendation.  However, I am not going to tell you how to bring your baby in to this world.

So, a C-section was not required?  But Iowa City was adamant on that.  But I also understood that two surgeons could see a situation differently.  It was just nice to know that I had a choice.  At least one of the surgeons thought I was healthy enough.  My OB team did too.  I at least had a choice.

Q. When would you do surgery?  How would you do it?

I have not looked at your scans to that depth.  (looking at the scans) I would probably enter through the base of the head.  (long pause)  Or quite possibly go in from behind the ear (using his cursor each time to show us his path).  The fact that you are expecting does not affect my decision.  If you needed the surgery now, we would do the surgery now.  Having said that, I will not do surgery on you at this time.

Wait, what?  Did I hear that right?  Shit, I am inoperable.  This is where I begin to panic.

Q.  You mean I am inoperable?

No, I could operate on you but I will not at this time.  I do not believe that surgery at this time would improve your quality of life.  You are recovering very well and your chances of another bleed will diminish over time.  I would rather wait for a repeat bleed.  If you bled again the new blood would form a bubble around your CM and push that healthy tissue a little bit further away.  You will suffer deficits from the rebleed and from the surgery but I think the chances of them not being as serious or permanent are much better if we wait.

Huge sigh of relief.  I am not inoperable.  My CM can be taken out and someone is willing to do it if I need it.  There is a way to do the surgery a bit safer.  A surgeon is actually talking about my quality of life and is genuinely concerned about my well-being.  Is this a dream?

Q. How many of these surgeries have you done?

I do a few a year.  It is a rare condition so we don't see that many of them.

Hmmm, the Iowa City doctor told us he had done 15-20 over the last year.  Maybe he meant in his career??  I will give him the benefit of the doubt.

Q. We have done some research on Dr. Spetzler from the Barrow Institute.  We know you studied underneath him before coming here?  What do you think he would say?

(with a big smile and turning toward my scans)  I did train under him.  He is excellent and does many more of these surgeries than I do.  (after reviewing my scans)  I do not think he would do the surgery now either.

Q. Really?  Why?

Because of your current condition, the location, and the healthy tissue around it.  (looking at the scans again)  Well, maybe he would.  He is a little more aggressive than me and has more experience with cavernomas in the brain stem.  You would have to contact him.  I can't speak for him. 

I didn't really have much thought on this one.  It would be nice to have his opinion, but I liked what Dr. Lanzino was telling me and I felt comfortable with him.  Plus he was close to home.  I didn't really want to have surgery all the way in Arizona.

 Q. Does she have any physical restrictions at this point?

No, you can continue with all therapy.  As times passes you can exercise lightly.  After two years you can pick up the intensity.  I don't want you to be a body builder though.  And I probably wouldn't kick box again.

Good news--I could be active again someday.  Bad news--I couldn't kick box anymore.  I guess if that was my only trade off, than I was happy.

At this point we were out of questions and he shook all of our hands and left the room.  I felt like a whole new person.  My condition was incredibly severe, but I was not a ticking time bomb.  I would have time to get the proper medical care if I bled again.  I did not have to have surgery at this time and my chances were good that I would never need to.  I had been given my life back in the matter of an hour. 

I was back.  I was positive, relieved, and refocused.  I was going to play the odds and hope to win.

I was going to get back to living.

The side profile of my head.  The top image was taken on October 25, 2013.  The bottom image was taken on December 26, 2013.

Looking up through the base of my skull from left to right.  The top image was taken on October 25, 2013 and the bottom image was taken on December 26, 2013.