An Unexpected Setback

During the first week of November I started having bad headaches behind my eyes and Motrin did nothing to control them.  My wife and I decided to see my neurologist to get his thoughts on what might be causing the headaches.  We also wanted him to check out the area of my incision that had been the source of several infections because it seemed to be changing.  After the neurologist scheduled an MRI we decided to go visit the Infectious Disease doctor and have him take a look at the incision site to see if he had any concerns.  The Infectious Disease doctor had us get my blood work checked prior to our appointment.  We visited all of my doctors and had my MRI in the same week.  All of the information was shared with my Neurosurgeon and her team.  She received the results late Friday and was concerned enough by my blood work that she had the Neuro Nurses call us first thing Monday.

My wife answered the call from the Neuro Nurse on Monday morning.  After the call she came in to see me with a very concerned look on her face.  She went over her conversation with the Neuro Nurse, which involved two options.  Option one included re-starting my prescription to heavy antibiotics and most likely staying on them for the rest of my life. Option two involved the removal of the section of my skull that had been surgically removed immediately after my injury on March 7, 2011.  

Even though I hated the idea of having surgery again to remove the skull flap, the decision took me about one second. Given the fact that I continued to have infections it seemed that my bone, which had been replaced after my accident, was the source of the multiple infections that I was experiencing.

The week was a whirlwind of doctor visits.  We visited the Neurosurgeon on Wednesday, did pre-op labs on Thursday and I had surgery on Friday morning.  I am not sure we processed exactly what happened because it was so unexpected and seemed to happen so quickly.  It didn’t seem to make sense as I wasn’t feeling “sick” and 2 ½ months before I rode my bike from Boston to Philadelphia with no problems.

I was in the hospital for one week.  The stay was longer than usual but the doctors had to ensure that they had the bacteria identified so they could treat it with the correct IV antibiotic when I went home.  Prior to my surgery the infections had appeared to be limited to the area near my scalp, however, during the surgery an additional infection was found inside my skull. Considering the location of the second infection, the decision to have this surgery might have saved my life.

I am on IV antibiotics for six weeks.  Then the doctors will monitor to make sure the infection is gone.  The original bone flap will be replaced with an acrylic prosthetic in 3 - 6 months if all goes well.

I have to say this has been one of the most difficult times sense my accident.  I truly felt that I had overcome the infections and was moving forward with my life.  I can only speak for myself but I have to say that the greatest challenge of my TBI recovery is that it seems to be one step forward and ten steps back. So for now my bikes are officially on “Moth Balls” until the infection is gone and my skull is rebuilt. 

If you are reading this blog, and have been through similar challenges I would appreciate your posts on how you addressed the challenge. Sharing your personal experience would be very helpful for me and others who are dealing with TBI issues.

Happy Holidays to all!

Fall 2013 Challenges

This Fall was full of challenges, both physical and academic.  Most of the experiences were meaningful and it was some of the best months since my TBI occurred almost two and a half years ago.

In early September I participated in Ride 2 Recovery’s Minuteman Ride.  The Ride was from Boston, MA, to Philadelphia, PA, and covered about 450 miles.  Ride 2 Recovery (https://ride2recovery.com/) is an organization helping our Nation’s Service members recover through cycling.  I participated in the Ride on behalf of Project Rebirth.  During the seven day ride I made great friends and now I feel like part of the R2R family.  Thanks to Cadence Cyclery in McKinney, TX, I was able to prepare for the Minuteman Ride and through their weekly rides I was able to rebuild my cycling foundation.  

For me, the most meaningful part of the Minuteman Ride involved spending September 11th with a group of people who accepted the challenge to protect the United States after one of the world’s most significant acts of terrorism.  Many of the soldiers on this ride joined the military after 9/11, and all of them made significant sacrifices.  For many of us who responded to 9/11 events, it can be pretty rough, but being with this group changed my outlook on this day - probably forever!  I repeated “Thank You” many times during this ride and I meant every word.  I have included some photos from the Minuteman Ride below.

Fall also brought an academic challenge as I worked on completing my second to last class to complete my Bachelors Degree, and it was the third class since my injury.  The class was a math course, something I had been avoiding for many years.  After my TBI, my academic advisor recommended that I notify instructors at the beginning of each class about my medical history in case any issues occurred.  

I notified my math instructor during the first week of the class with a one sentence explanation.  The response I received back was “So I guess you expect me to accept late assignments.”  Because this response was so insensitive and unprofessional, it took me several days to shake the negative feelings that this exchange created.  It was a reminder that not everyone understands/appreciates the challenges that face those with brain injuries.  I was able to move on and successfully complete the class.   

While my injury has slowed me down I am glad that I am able to continue with my education and my cycling. 

Please don’t hesitate posting your suggestions and thoughts.  They are helpful to me and other TBI survivors, caretakers and family members.

Wishing all a Happy Holiday Season!