Monday, March 18, 2013

Bearer of Bad News

The first several weeks of Jacob's spinal fusion recovery went well.  He rested at home, played video games and went for walks.  He was as straight as a board. Although, he wasn't feeling much better than he was prior to the fusion his gait was straighter, his knee pain was mostly gone and some strength had returned to his hand. He started PT and went back to OT.  He went back to school at 5.5 weeks post-op and started back in Boy Scouts a week or so prior.  We were very proud that, in a short amount of time, Jacob finally finished several outstanding, incomplete merit badge requirements, his Scout Master Conference and the Board of Review and earned his Life Scout rank!  There’s only one rank left to complete, and that’s the Eagle! He is officially on his way to Eagle Scout under the guidance of some very generous and well-versed leadership!

Aside from the small struggles of getting Jacob to sit up straight and lay down flat, he was progressing. Fast forward to week seven post-op… We waited until March 14th to schedule Jacob's post-op appointment at Shands with Dr. Pincus' office so that Jacob could also see the neuro-radiosurgeon, Dr. Friedman, regarding options for dealing with the acoustic neuromas (specifically, the right side VS) when the time comes. Jacob’s hearing is still good, but if the VS grows past a certain size threshold, radiosurgery is not an option. The options after traditional neuro-surgery are almost certain to cause functional hearing loss among other possibilities. So we were fact-gathering, and after talking with Dr. Friedman, radiosurgery sounded like a very minimally-invasive treatment.

Back to the appointment… Prior to meeting with Dr. Friedman, Jacob had his post-op with Leigh Anne. After a quick look at Jacob and a discussion about some pain, we were sent to have x-rays. Another little wait, but not too terrible, and we were back in neuro with Leigh Anne and Dr. Pincus, which was a surprise given that he was not supposed to be at the appointment. Jacob’s x-rays showed a 3-word condition, Proximal junctional kyphosis, that means that his spine has basically fallen at the vertebrae above the fusion, causing his pain and which will eventually lead to the screws being pulled out of the original fusion. After a brief discussion with Dr. Pincus, it was clear that the only alternative is another fusion, this time taking the next three vertebrae above the fusion and essentially eliminating Jacob’s up-and-down motion. He’ll still be able to pivot left and right, but it appears that his neck mobility may be considerably hampered. Just when we thought it was safe to be hopeful again…

So we’re gearing up for another, albeit smaller scale, fusion, tentatively set for April 1st. Jacob is in a very uncomfortable neck collar in hopes to avoid another horrible night of traction or any further damage to his cervical spine.

Dr. Pincus said that it could wait long enough for Jacob to enjoy his Spring Break (with a collar), but that it could not wait until after the school year was over. We’re hoping for the best on every front, but it often feels like Jacob (and our family to an extent) is getting constantly bombarded. I wish Jacob could catch a break. He needs it. We all do.

No comments:

Post a Comment