Oddly enough, upon reflection – it appears “Tina” tried to make her presence known to me many years ago. At the age of 48, in February 2017, my neck pain reared it’s ugly head again and with it a headache that only hurt when I physically laid my head down (immediate pain that truly felt like someone had taken a baseball bat to the back of my head); sit up – pain gone – lay down – bam! So, my new plan – sleep sitting propped up with pillows against the headboard. Flashback to 2004 when I started having right side neck pain at the base of my skull. Stress? surely, it must be from the demands of my job? driving? sleeping wrong on it? Many thoughts on what could be causing it. I sought treatment in the form of; chiropractic techniques, biofreeze ointment, massages – you name it, I tried it. After approximately 4 months of dealing with the pain, it mysteriously went away. Awesome! In February 2013 my husband and I relocated to Georgia (same company – new (more demanding role); pain surfaces again – same place, same thought- stress!! This time, it only lasted for approximately 2 weeks! Great! I really need a therapist to manage this stress. Fast forward – February 2017 to aforementioned symptoms. I dealt with them for a couple of weeks again thinking -“stress” – in March 2017, a new symptom emerged – dizziness and a 5 second “black-out” during a presentation (I was giving) – I froze with no idea what to say about the slide. Drove home the 1 1/2 hours (yes, dizzy) and had a panic attack – straight to ER. Sat in ER for > 4 hours with my husband reminding the receptionist “we are still waiting”… After 4+ hours, I decided to leave – panic attack passed and it was well past midnight and I was tired. The next day, google was my friend and between the 2 of us (yes, google and me) we decided “middle ear infection”! yes, that HAS to be it – all symptoms match up! I called my PCP that day, explained what was going on – they scheduled me for an appt in the coming weeks. We are now into April and my PCP sees a little bit of fluid on my ears, but not enough to say ‘middle ear infection’. I say, let’s do further testing, can we schedule a scan and see what is going on? My CT scan was scheduled for a Monday and I was due to fly out of town later that day for work. No go – PCP says “no flying – if you have a middle ear infection – that could cause serious damage”. – Okay, so I’ll drive. Had my CT scan, walked out of hospital and drove 6+ hours for a week long work meeting. PCP calls me the following day (I excuse myself from meeting – “hey dy” says my doc – “did you hear from the radiologist?”. “No, was I supposed to”? “Yes, he says – you must have moved while in the scanner – something is showing up – but we need to get MRI to see better”. “Okay, I will be back home in a week”. “Okay he says – so, next Monday go straight to hospital for MRI in AM”. I return to my meeting – only thinking, I know I did not “move” during that scan.
Monday, May 8, 2017 – MRI @ 730am. I decide to work from home and I receive “the call” at 11:00am from my PCP – “so dy, you have a brain tumor at the base of your skull”. At this point, my only feeling is “relief”…. relief that I have not lost my mind, my symptoms weren’t made up, I wasn’t imagining them, they did exist and there was a reason! Then reality…. oh, wait what? My PCP said many things after that – I am not sure of everything – I did write down “Meningioma”. What an odd word – never heard of it. I do recall him saying, more often than not they are NOT cancerous and some can be taken care of with proton therapy without surgery. While my Tina Tumor was not cancerous, she was large and located in my brain stem which would require surgery. My husband and I met with my surgeon at UF Health in Florida towards the end of May. He walks into room, shakes our hands and at first starts to talk about the tumor. He catches himself, grabs a stool, pulls it up beside me and changes the entire scene – “so, how did you two meet”? “how long have you been married”? While I am thankful that he showed empathy and compassion, I KNEW, I KNEW….. this isn’t good if he is asking personnel questions and wants to get to know us. My amazing husband (and amazing doesn’t even touch what I feel for him and what he has done for me and how much he went through – without a complaint, without a peep- with a smile on his face and always LOVE for me at every single step); anyway, my husband had to answer the questions because I was speechless, processing what was coming next. What came next; large tumor, surgery to remove, if you don’t have surgery – you will go to sleep and not wake up one day (yeah, can’t do that to my husband). 1) could lose hearing in right ear (okay, I can live with that). 2) could have facial drooping on right side of face (okay, I can live with that) 3) the location is close to vocal cord, throat, so you could have a feeding tube (yeah, not so much). So, I agree to the surgery – however, with stipulations and my 5 wishes (if something went wrong). After many, many, many tests and scans, my surgery was scheduled for June 5, 2017 – My surgeon actually made a 3D mold of my head/tumor so he could practice prior to my surgery. The location is very sensitive and the tumor had many nerves wrapped around it – he wanted to give me the best possible outcome for the best quality of life. Hold on for this one – the surgery was 24 hours – and at that, he was only able to remove 20% of the tumor. The location and consistency of Tina Tumor prevented a full removal. The recovery for me wasn’t so easy – after 7 days in ICU – I had to have a second surgery for a permanent shunt in my head to drain fluid. After a few more days in ICU – I was sent home to recover. After being home for approximately a week, they reviewed some MRI scans from last day in hospital and it was determined I had 2 clots in my sinus cavity of the brain. Back in hospital for blood thinners and monitoring for 1 week. Additional surgery in September to repair paralyzed/damaged vocal cord. I am happy to report that I was able to return to work after being out for only 11 weeks and my most recent scan earlier this year (2019) showed “no growth from Tina Tumor”. she is not growing….. my surgeon tells me “he was able to give me decades to live and that Tina is a very, very slow growing tumor”. Let’s hope she remains quiet – I am a little tired of Tina…….
I am lucky for many reasons, not only am I alive, I have a family that has protected me my entire life – when Tina Tumor showed up- they rallied (as usual) and were there for me and my husband every single step of the way. Family and friends sat vigil at the hospital, visited me at home and were there for me for whatever we needed. They all put their lives on hold to help me! Friends – visited, pampered and made meals – hand delivered to us for weeks on end. I am ever thankful and grateful for everyone in my life and I cherish each and every one of them for their love and support!
The moral here – I believe we need MORE proactive measures for identifying brain tumors – more preventative measures – more exposure. I believe if someone had encouraged me to get a scan in 2004 when the symptoms first appeared, Tina Tumor would have been caught early and perhaps been out of my life forever.
Thanks for listening “reading”…….