Update On My Health

Quite a few people have asked how my dr appointment went this past week, so I thought I would make a post to give everyone an update all at once.  But in order to clearly explain what's going on, I need to give a little history.

My first back surgery was when I was 18 months old.  I had surgery to remove a tumour that was on my spinal cord.  6 months later, it grew back so I had surgery again. Then, when I was 15, my tumour grew back and I had surgery to remove it again.

The next few years everything was pretty stable which allowed me to enjoy the rest of high school, college, and my first few years of marriage. Once I had our last daughter, I started noticing some changes in my walking and some other things.  I have been followed by a doctor all through the years, having yearly MRIs and x-rays.  In early 2015, my neurosurgeon decided that it was time to operate.  My issues were not from the tumour growing (although there is still tumour there - it just hasn't changed in 18 years, praise the Lord!).  My issues are from pockets of spinal fluid that collect on my spinal cord where the tumours were before being removed.  This is called a syrinx.

So in June of 2015, I went into surgery to have a shunt placed in my spine.  The shunt is a small tube that drains the spinal fluid out of the syrinx and into my lungs.  That seemed to fix the problem - for a while.  But in January of 2016, I started having the same problems again as the year previous.  Walking became much harder, I had an extreme limp, and was experiencing more pain than normal.

After another MRI and talking with my doctor, we decided to have surgery to be sure that the shunt was not plugged or kinked or anything that would cause it to not work properly.  So the beginning of this past June, I had surgery where they went in and fixed the shunt, getting it to work properly again.  Actually, they got it to work a little too well to where it was draining the fluid too fast and I ended up having no spinal fluid on my brain.  This is NOT good and gave me an extremely painful headache - the worst pain I have ever felt.  So three weeks later I was re-admitted to the hospital and three days later had surgery again.

This time, they placed an adjustable valve on the shunt that would control how fast the fluid drains.  Immediately when I woke up from surgery my headache was gone and I could actually sit up in bed (had not really been able to do this without extreme pain in weeks).  I was so glad and expected to go home soon.  Then I started having breathing problems, my heart rate went very high for several days, and I had a large amount of fluid they had to drain off my lungs.

Once all that was good and they released me from the hospital, I thought all was good.  I couldn't walk really well, but we just attributed that to the fact that I had been bedridden for a month and had two surgeries.  But as time has gone on, I have not been getting better.  My strength has not come back to my legs.  I have seen a few physical therapists but with us not having a home or job, we have just been travelling around staying with family and it was impossible to get into the intense physical therapy regime that we thought I needed.

My appointment this last week was really just a follow-up with my surgeon from the surgeries.  But once I got there and he saw my struggle in walking, he ordered some tests.  I had several X-rays and an MRI.  These both show everything is good and clear.  He also adjusted the valve setting to make the fluid drain a little faster.
This is a simple procedure that is done with a magnet right in his office.  But it is tricky getting the right setting.  The valve can be set anywhere from .5 to 3.  The lower the setting, the slower the draining.  The higher the setting, the faster the draining.  When I went in it was at a .5 setting.  So he changed it to be at 1.0.  The adjusting of the valve has to be done slowly and possibly several times before finding the correct setting.  If we do it too high too fast, I will get that headache again.  But if we have it too low, there will be too much fluid collecting in the syrinx causing pressure on my spinal cord and affecting my leg movement.

So now we are waiting and seeing what the adjustment does.  As of right now, I am not better but worse.  I currently am completely unable to walk at all.  So I am solely dependant on being in a wheelchair or having Matt carry me.  I need help with everything.  It is quite humbling.  The plan is to continue therapy and keep being seen by a doctor.  My surgeon is referring me to a colleague he knows well out here in the east so I can get to him more often and we can continue finding the right valve setting and get me walking again.  As of right now, we don't believe this is a permanent condition.  But it's going to be a long slow process trying to figure it all out.

To say I don't cry about this or am not frustrated would be a huge lie.  I am having a very hard time not being discouraged.  We have enough stress in our life, and this added issue sometimes feels unbearable.  At times, it's hard to keep positive about it all (just being honest here). But I know that God has a plan for me.  I know that, although this was not what I expected to happen after surgery, He knew all along it was coming.  He is in control.  He has a purpose.  He loves me.

I would very much appreciate your prayers as we continue in this trial.  We have an awesome God who is more than able to handle this.  I can't, but He can.  He is good.  Always has been, always will be.