What the Next Few Months of My Life Will Consist of....

I just got home today and as of right now I have appointments to go back to Rochester in August and December.  Yesterday the neurologist said the spot on my spinal cord is mainly just scarring and is caused directly by my scoliosis.  The scarring is right where my my spine curves the worst.  After an ultrasound on my right kidney they found 3-5 cysts on that one kidney but they are 'renal cysts' so they are totally harmless and should go away on their own.  The cyst on my ovary is very tiny so that one we aren't worried about either.

When I met with the urologist he said they are concerned because where the scarring on my spinal cord could be causing nerve damage in my bladder so I have to go back August 10th and 11th to have testing done on that.  Once we get the results on that we will know better what to do moving forward.

Then December 28th I will go back to have a check up with the neurologist and have another MRI done to see if the spot on my spinal cord has changed at all.  Dr. Kumar (the neurologist) said he is positive we have nothing to worry about with future back surgery or the spot changing but we need to make positive that it is stable and not getting any worse.  If we were to have surgery now the screws they put in would block the spot from being viewed in an MRI scan and we would never know if it was getting worse.  I will also go through all the pre-op work again on December 28th and if all results are good I will have scoliosis surgery on December 29th!  This is just a tenative surgery date though, nothing is for sure until I have another MRI!

Thank you for your prayers!!  This has been a roller coaster emotionally, mentally, and physically! I'm just very grateful I have access to such amazing healthcare!

What a Curveball!

I was supposed to being in surgery mow but we've had an unfortunate change in plans. Yesterday during pre-op testing I was called back for a second MRI. My nerves immediately kicked in! I was so proud of myself, testing was going so well! I didn't even pass out during my blood tests (that is AMAZING for me!!!!) But during the second MRI they had to put a needle in so they could inject my veins with dye. I did not do well with this! It hurt much more than the previous needles and I started crying immediately! Shortly after the room started spinning and everything started changing colors! After a while (and the nurses scurrying around trying to help me!) I was feeling better and all I had left for the day was to meet with my surgeon and another assistant surgeon!

We waited over an hour in the waiting room to be called back and when we finally were called back, we found out why we had to wait so long...my surgeon had to consult with a neurologist because they found a spot on my spinal cord right above my lumbar curve and where they would fuse! They called the spot mild myelomalacia which is the softening of the bone. We had to cancel surgery for today because they're worried if they were to fuse my spine it would block this 'spot' from being checked in future MRIs. It could also cause motor nerve damage which we don't want!

They also found cysts on both a kidney and an ovary! Talk about news! I have an appointment this afternoon for an ultrasound of my kidney and an appointment tomorrow with a urologist. I was going to have to wait until August for an appointment with a neurologist to find out more about the spot on my spine but we got a call this morning and they are fitting us in today!! I am in the waiting room as we speak waiting to be called back! I am also seeing an adult neurologist which was controversial..

Surgery in one week! Scared? Absolutely NOT! :)

In exactly one week I will be under the knife, I'll have two rods on both sides of my spine, screws, hooks, and all sorts of needles and tubes coming from my body.   I have the lowest tolerance for pain out of anyone I know, I have a phobia of needles, so how in the world am I not scared?!  To anyone freaked out about having surgery of any kind my advice is to fill up your schedule with all the fun things you love to do, or things you've always wanted to do.  

I've kept so busy, working lots, hanging out with all sorts of people, and spending time with my family.  I can honestly say even though my summer is being cut short, it;s been the best summer of my life.  I'm so ready to face my scoliosis head on.  I have the most amazing support team anyone could ask for, and surprisingly I have the strength to face major surgery: something I never in a million years thought I would have.


Thank you to everyone that has listened to my story, whether in person or from my blog, caring bridge website, via other family members, anything, and everyone!  You are all amazing and thank you for being here for me during this stressful, scary time.  I will make sure to update my blog on my day of pre-op work for all of you followers!  You can also check out my caring bridge website, which my mom will be updating when I have surgery and the week I stay in Rochester! God bless!




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