Surgery Follow-Up

Let me start out my explaining that this post and health update has absolutely nothing to do with my chronic pain issues that are located in my abdomen and the back of the left side of my head.  I have several complex health issues and I know that it can get confusing at time; and believe, me sometimes when I tell my parents “I’m in pain” my Mom has to have me clarify what type of pain or where is the pain I have.   It’s a bit frustrating.  So, I decided to start out this update by saying up front that this health update has NOTHING to do with my chronic head pain/abdominal pain.   This update has to do with my genetic disorder that I have battled with all my life.  This genetic disorder is called Neurofibrimototis.

Background:

For a couple of years, I have had on again off again pain at the right side of my temple all the way behind my ear.  I put up with it because the pain wasn’t nearly as bad when compared to the other pain I was experiencing plus the medication I was already on for my other issues was helping somewhat.  Well, the beginning of this year, around February or March, the pain began to become more and more intense and at times, seemingly unbearable.   I made an appointment with my surgeon and he said he believed it was NF growing in that area.  A MRI scan confirmed this.   Any of you who knows me well, knows that I was concentrating more on my other health issues; and therefore, I was trying to put off surgery (plus I had to work it around my parent’s schedule and the busyness/overtime) until I was ready for it and until my insurance authorized the procedure.

Surgery

Well, surgery was on Dec 10^th.  <Insert:  I can tell I have gotten old.  I remember those days when I was really young, as in school aged or younger,  and was able to bounce back the day after surgery….I was able to eat, drink anything I wanted, and walk around, and not have much restrictions.   I miss those days>.   The surgery was about two hours long.  The incision site was about 8-10 inches long, the tumor was about 6-8 inches long and around 2 or so inches thick….. that’s actually pretty big for where it was located. The doctors were not expecting the tumor to be as big as it was.     The interesting thing about where the NF tumor was located is that it was also buried and somewhat entangled around several blood vessels that Dr. Gampper, best described it as “similar to older women getting varicose vein.”  Because of this, they had to work take out some of the blood vessels along with the tumors.  I did bleed some, so they had to insert a draining tube in me for 24 hours.   Luckily, I was able to get it removed before I went home the next day.

Recovery

As I said, I did spend one night in the hospital and was able to go home before lunch the next day.   The first few days at home was rough and very painful, as to be expected.   I went back for post-operative check with my surgeon on 12/22 and to get the stitches removed.    I’m still struggling with pain & fatigue, but the doctors did say it was normal, especially with this type of surgery and to expected it for a while .  I’m still on limited/restricted activities, which really for me is fine since I get tired so easily and quickly.  He really just wants me to rest.     Christmas was well enjoyed with my family.  It was quiet and nice and I did get to rest a lot.     I was able to hang out with my sister and brother-in-law and see the opening night of Into the Woods which was a good musical.   I figured sitting and watching a movie is considered a limited activity, right?

Thank you for all of you who prayed for me before, during, and after my surgery.   I really mean it.  It has meant the world to me. And thank you for continuing to pray for me as I continue to struggling through post-op pain as well as my normal every day pain.   I appreciate every one of you.