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.

I forget to mention that during the next spiral CT study next month they're finally going to do an ultrasound of my carotid, I already know why the results are going to be. I can tell by looking.

GEEEEEZ the drs probably run and hide when you come in the door.

(sorry couldn't help myself) you are a survivor my dear!!!!

Wow. Hopefully they get everything sorted out for you. It sounds like a perfect storm maladies. I am sorry about the stroke... assuming it happened in the hospital they likely dealt with it swiftly so I'm praying there's no permanent damage. With physio and a swallowing specialist I hope you will regain your swallowing. Hugs.

Gary, I don't know even how to wrap my mind around this. Puts my own swallowing difficulties in huge perspective, although I must admit I perked up my cyber ears when you mentioned aspiration pneumonia and thinking it was normal.

All I can do is send best wishes and courage, which you clearly have in abundance. I'm really sorry about your having to get the PEG because like you that was something I resisted vehemently during my treatment. Hope it's something you can deal with without too much discomfort.

Please let me know if there's any way I can help you.

Let me clarify. I didn't think that pneumonia was normal, only swallowing problems were. Until I was hospitalized it manifested itself as a one day fever that would resolve itself then recur a month later. As it got worse it was occurring weekly (but never lasting more than 1 day). It baffled my entire medical team. Classic FUO, typically is a fever that lasts several weeks. Even when I was in the hospital on December I had no pneumonia diagnosis.

I don't come here very often anymore, but saw your post. My husband is about 11 post treatment, too. The aspiration pneumonia has become a huge issue for him...he spent 2 weeks in the hospital (after I called 911 in the middle of the night) fighting a very severe case of it. He had been treated (probably more like "undertreated" for less severe cases for many months). Even though we both were pretty certain of the cause, the hospital doctors didn't want to acknowledge that it was aspiration pneumonia until they had done HIV test, tuberculosis tests, etc. It was a swallowing test that finally convinced them of how bad his post-radiation swallowing was, causing the aspiration. He went back on the dreaded PEG tube in Sept and is still on it, though doing swallowing therapy and trying to eat by mouth again.

Hate to scare people currently going through treatment, but the aftermath of this disease (more specifically, the treatment) is brutal. But, hey, at least he is still alive.

Anita, I'm sorry to hear your news. It reaches a point that "...but...at least...still alive..." doesn't cut it any more. The brutality for many doesn't rear it's ugly head until years down the road; for others it was relentless and never let up.

"Brutality" is about right.

After taking liquid B-Max ND, B vitamin supplement since May, I managed to get my B12 levels to double normal (better than 75% of normal, which is a very good thing. My Igg numbers are unchanged so the MO will be following me indefinitely for MGUS. I have ditched the formula and eat only blended foods now and feels lots better - even gaining a little weight back. I see the MO next week so I'll update things in more detail then.

Saw the MO. He's happy with my progress but still testing me every 6 months for MGUS. More than likely, the MGUS is due to the hep C that I have.