At 2 years out I started having neck spasms from fibrosis due to radiation damage to the neck muscles. My understanding is that this is to be expected. For the past several years I started having problem with erratic blood pressure and the docs attempted to control this with BP medications. This was my first trip to the ER. Oddly I had a routine followup with my MO and it kept going up instead of down, like it typically does (I have "white coat" syndrome) . When it hit 181, systolic, they loaded me into a wheelchair and down to the ER I went. They fine tuned me and I was discharged later that day.

I started having Fevers of Unknown Origin (FUO) and had many tests to get to the bottom of that, culminating in another ER visit and subsequent 4 day hospital stay when it hit a nice toasty 105 degrees, in December of last year. All the while, I am seeing a pulmonologist, infectious disease specialist and a hepatologist (I have HCV) as well(. I have had about every blood test there is, as well as a bronchoscopy (with lavage), endoscopy with stomach biopsy, bone marrow biopsy (thats a fun one - I have the entire procedure video'd on Facebook) - Warning - not for the sqeamous! This all coming to a head a few weeks ago with a brainstem bleed (stroke) with a second bleed the very next day while having dinner in the ICU.
Brian and I had discussed the BP issues and he sent me an article on Baro-reflex failure, long before I had the stroke, I started enlightening my medical team to this issue. They were reluctant to believe me, leading me down many diagnostic paths such as; the HCV has become active in the stomach (due to a thickened antrum) which showed up in a spiral CT during the 105 degree fever incident. I'm still being followed for MGUS (Monoclonal Gammopathy of Undetermined Significance) due to low B12 and a positive monoclonal antibody test (the MO was going down the non-hodgkins lymphoma route then). If there is a bright side to having a stroke, at least it finally connected to dots, so to speak. It turns out the FUO was caused by aspiration pneumonia. I see, from reading the posts, that's showing up more with long term survivors. Evidently I have had swallowing issues for quite some time (nobody told me - I just thought it was part of the "new normal"), on the right side (where the radiation was focused) and the left side, sort of, carried the load until the stroke. I failed the video fluoroscopy test and then the full extent of the swallowing issues was visualized. I am hoping that rehab allows me to resume at least some swallowing function in the near future. I the meantime, I had to have a peg installed, which I fought vehemently during my original treatment, (sooner or later its going to get ya!) I was always in the "not to peg" camp. It was that or death from pneumonia. I've only been out of the ICU for a week so PT is just getting started. They tried a new BP medication which caused such severe zerostomia, that I went back on Atenolol and hopefully that will help me from having another stroke (which occurred in the Pons area of the lower brainstem). I am recovering rapidly from the stroke (hopefully I won't have another) and there will be more revealed as I travel down this path.