Your Head Just Ain’t Right: Coming to Terms with My Tumor

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I’ve always been very fortunate to have very few health problems. I was hardly ever sick as a child. The times I was, I recovered quickly. I can count on one hand the number of headaches I’ve had my whole life.

And then there was the headache that wouldn’t quit.

I had a headache that was sitting behind my right eye. I literally felt like if I could just get in there with a scalpel, then maybe I could dig out the pain. It was worse when I laid down. Light and sound didn’t seem to make it worse, like it would with a traditional migraine. Any sort of movement was terrible. If I had to bend over to pick anything up, my head would throb and hurt 10x worse that before. Explaining my level of pain on a scale of 1-10 was interesting. It went something like this.

Well if I am perfectly silly, and am sitting up, it’s about a 3. If I move my head quickly it’s a 10. If I bend over it’s about an 8. If I take ibuprofen or Tylenol and don’t move at all while sitting straight up, it’s still pretty much a 3.

Yep I’m one of those patients/people. I have to dance around the point and tell you a lot of extra details that you could have probably done without, but they make the stories much more entertaining and colorful.

So after a week of dealing with this near constant pain, I saw a neurologist.

After a decadron IM injection to the ventrogluteal muscle, I wanted to kiss my neurologist right on the mouth. I’m not sure how his wife or my husband would have felt about that, but considering the relief he gave me from the pain I was facing, I’m sure I would be given a waiver for my lapse of judgment.

But he thought we both thought it was weird and wanted me to get an MRI within the week.

Two days and $2700 later, they scanned my head and that pretty picture you saw up top is what they found. Except, of course, the x-ray techs don’t/can’t tell you anything.

I found it odd that immediately after sitting up on the MRI table the rad-tech’s question was “When do you see your doctor again?” – “Um Friday.” The Rad-tech “OK. Good.”

I brushed it off, but it did bother me. She just seemed worried when she asked.

Two more days later and I met with my neurologist again.

He brought me into his office to show me the results of my MRI. He showed me the above image and referenced how my pituitary gland was too large. I asked him what that meant. He danced around the words to describe to me what was going on. He said I needed to get another MRI with contrast so they could get a better idea of what was going on, but my pituitary gland was defiantly too large.

“So what is it, like a tumor or something.”

“Yes. But it’s probably benign. If you tell someone it’s a tumor they might think you have cancer. These are rarely ever cancer”

I obtained the MRI results and read for myself what the radiologist thought my my brain mass. Apparently I have a pituitary macroadenoma and has suffered a headache related to something called pituitary apoplexy.

The neurologist referred me to both an endocrinologist and an neurosurgeon. The result was the recommendation to undergo Endoscopic Transsphenoidal Surgery to remove the tumor through my nose.

I was shocked, really.

A friend of work accompanied me to my visit with the neurosurgeon. I was just sure he was going to tell me to watch it and wait.

Instead He tells me that it’s rather large for me to be so young. He tells me that if it grows much larger it could get involved with my carotid artery and they only way he could attempt to remove any of that would be with radiation. (I’m not too keen on the idea of radiation my brain). He also said much larger and it would press on my optic nerve and I could go blind.

He’s performed 1500 of this specific surgery. I’m bless to be so closed to Atlanta and the Emory clinic, but still… it’s my brain. It’s not my guts, or my foot, or an elbow. It’s MY BRAIN.

So of course, I can’t help but worry:

What if he sneezes, pokes through my brain, and then I can’t do matt.

What if he trips over a shoelace and pokes a hole right through my head and I forget how to walk.

And then there is this lovely commercial.

It’s hilarious.

Even though I have an impending brain surgery and the thought my someone digging around in my head is both frightening and surreal.

So I guess it finally struck me today: the irony of the situation, to some extent, that is. My head ain’t right. I always knew I was odd. But the few who have told me “You ain’t right in the head,” usually got a chuckle coupled with a “whatever.”

I guess they were right. A brain tumor definitely isn’t right.

So now I guess I get the opportunity to see healthcare form the other side of the fence. Nurses are notoriously bad patients.

Let’s hope I don’t drive those neuro nurses nuts.

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32 thoughts on “Your Head Just Ain’t Right: Coming to Terms with My Tumor”

  1. OMG….I missed a lot while I was in my “I am boycotting my blog” mood!!!! I am so sorry you had to go through this!!! I am going to read the rest now to see if they were indeed able to extract it like a big booger or if you needed something more invasive. I sincerely hope they did it through the nose and I hope you are feeling better now!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!

  2. I would be scared to pieces, no joke. I had seen some tweets but nothing specific. I am so glad you are gonna be alright!

  3. Coach Perg - The Nurses Coach™

    So sorry to hear of this Brit. Sending good energy and love and looking forward to hearing of your recovery!

  4. Sorry to hear about this Brittney,brain surgery is definitely scary but it sounds like you have a good and experienced surgeon. On the other hand it’s great to get a diagnosis and know that they found the cause of that terrible headache. Hopefully soon you’ll be done with this surgery and feeling better.

  5. Brittney, so sorry to hear you’re going through this! Way to be courageous and ‘come out’ and talk about it! So glad it’s benign and that you’re in, apparently, awesome hands! Please keep us updated and I like Dr. Dean’s idea of Tweet chatting the surgery! Seriously, though, all the best to you as you navigate the system from the other side and get healed quickly. And don’t worry about your nurses, they’re made tough, like all of us are!

  6. Hey B, sorry for your brain bump. Let me know if you need an extra blog post or anything. hang in there. Will you be tweet chatting your surgery?

  7. Hello Brittney, sorry to hear the news. Am glad that your doctors have a handle on it and know what to do.

    Try to to worry too much, get yourself worked up. A month or so after the surgery hopefully everything will be back to where it was and you can get on with your life.

    Wishing you the best.

    Andrew Lopez, RN

  8. Brittney, I am so glad this was found before blindness! You’ll be an informed patient who will watch everything going on around you pre and postop and you should come out great.

  9. Greg Mercer, MSN

    Brittney, you’re a great person and a great Nurse, so you’re in my thoughts and prayers. You’ve got the pluck to come through this fine, and still blog like a pro!

  10. Holy s***, Brittney! I just found out about this! Of course you are going to blog your way through this – and we are going to be with you every step of the way. Your brain is fine, and so are you. Your pituitary has issues, but not for much longer. Thank GOD for the headaches, they led you to the problem. I’ll be saying prayers for a successful surgery, a very quick recovery. I’m always here, too, if you need an ear! {{{{}}}}

    1. Kim,

      You guys totally rock my face off.

      I’ve been debating for a while the best way to “Come out” with it. Wanted to blog on it, but I just couldn’t find the words for a while.
      I will keep ya’ll updated.

  11. Oh Brittney…I’m so sorry that you are going through this…I think as medical professionals, it is so much worse because we know way too much. I have often in my personal medical issues wished I had the blissful ignorance of most “lay” people. My thoughts are with you and I wish you all of the positive energy that I can send your way. Please keep us posted.
    Claudia

    1. Claudia,

      Thank you for the kind words. You’re right, sometimes I think it would be so much easier to not know the things. But even if I weren’t involved in the healthcare industry, my curious nature would be having me google my little heart out. It’s probably better that I have facts and education that I can go on rather than just the art of googling… although I’m a pretty good googler.

  12. Brittney, you found the words. Strong work. And just like we talked about before, “even brain surgery ain’t brain surgery.” You will do great, your surgeon will do great and you’ll be back being “Nerdy” in no time.

    1. Jennifer,

      I found something, didn’t I, lol.
      I think anytime you do a routine thousands of times it becomes like second nature, you know?

      It’s a university hospital. I told them I’d prefer not to have any residents poking around in my head. They pretty much tried to talk me into it and almost made out like I didn’t have a choice. Can they do that?

      I don’t mind nursing students or residents participating in my care, just not the part where share instruments are dangerously close to my brain, you know.

  13. Well, that sucks. I’m sorry you’re going through this. I work closely with neurosurgeons, and the level of attention they give their work is quite amazing – something you want from the guy digging around in your brain. Benign – yes. Scary still – yes. I have you in my thoughts and prayers, Britt.

  14. Hi Brittney. So sorry to hear about this. But the doc is right. The trans-sphenoidal approach is best, and it is necessary to be rid of it. Just think, I take care of children following neurosurgical procedures all the time and they do fine. I am sure you will too! Just make sure he identifies and avoids your sense of humor center. Would hate to see your blog posts get too serious, if he removes that.

    I would say that most of us in healthcare are “not right in the head.” As to you driving the neurosurgical nurses crazy, well…. I am sure you will find the right balance. Its not fun being a patient–ever. Good luck and keep us posted.

    1. Alice,

      I’m not sure where my sense of humor is located. If I had to guess though, it’s probably left armpit or some other obscure location. So I think we’re good. 🙂

      When he said he did these through the nose, my first response was “but I have a tiny nose, I don’t think it will fit.” To which he replied, “I do this on eight-year-olds.”

  15. Brittney,

    I’d recently come across a couple of these cases (all with positive results), and do wish you well on this journey as you briefly transition from healthcare provider to patient. I’ll speak for the majority and agree that we do stink as patients.

    I had a brief round at an ER for sustained heart palps (I’d been having some GERD, but my wife made me go), and being a cardiac nurse I kept asking to see the 10 second strips they were printing off. I was however very polite and respectful of my fellow nurses. They were great, and I already knew the doc, but he’s a top notch guy.

    I don’t know whether it’s better knowing what we know, or if ignorance is bliss in these situations. I’ll be thinking of you, and it’s really great that you’re able to share this experience.

    1. Kevin,
      Knowing the people who are taking care of you makes the burden of you being a nurse less cumbersome to healthcare providers, I think. It lets them be put at ease instead of on high alert.

      I’m lucky. Of all the brain abnormalities to have, apparently this is one of the better ones.

  16. Brittney,

    Sorry to hear of this. As a healthcare professional myself, I hate being a patient and my husband says I am the worst one. LOL. I cannot stand to be in pain. It makes me grumpy. So thankful to hear that they found it early. I cannot imagine surgery through the nose. Ugh! That just sounds painful. On the bright side, at least this isn’t his first surgery. I do wonder why they didn’t use the contrast while you were there the first time. Now you have to pay for another MRI and they are not cheap.

    I have had two neck surgeries and even though it wasn’t my brain, it was close enough for me. So, I only wanted “the best” performing my surgery. I drove 6 hours to the doctor. Was it worth it? You bet! He was the greatest. You are so lucky to live in an area that has such a prestigious organization and physicians.

    I wish you the best and you and your family will be in my prayers. Please keep us updated.

    God Bless,
    Keri

    1. Keri,

      Worse part is I can’t sneeze for a month!
      Well I can’t sneeze through my nose, that is. I have to sneeze through my mouth. That certainly will be very interesting.

      Thank you for your kind words and thoughts. 🙂

  17. Hi Brittney!

    Wow a benign tumor in your brain! Sorry you have to have this going on and am thinking about you. Sounds like you are in good hands and thank goodness for neurosurgeon, technology, and prompt tx!
    I’ll stay tuned here for updates and please know I’ll be thinking of you!
    Take care,

    Beth
    P.S. Pain sucks and I can understand the grateful kiss of relief!

    1. Beth,

      I often make the reference to kissing someone right on the mouth.

      One day I should do it. That would certainly make for an interesting first impression…

      Yea.. probably not going to do that. But it’s certainly funny to thing about.

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