My first surgery

If anyone reading this has a pheo and is waiting for surgery, here are a few points to remember:

Surgery is dangerous, no matter what kind… but removing a pheochromocytoma is like no other

Pheo surgery is a beautiful dance, a delicate balance between the surgeon’s expertise and experience, and the more than qualified anesthesiologist. Experience Experience Experience!

Experience IS important with this surgery, it’s like asking a person who only knows the macarana to do the black swan ballet, see where I’m going?

Last but not least… no one with a pheochromocytoma or paraganglioma tumor should be prepped by a regular doctor, you NEED the expertise of an endocrinologist, preferably one who has dealt with pheochromocytoma a few times. (Hey, it’s a rare disease… they won’t have treated hundreds, but you know what I mean)

Which leads me to my first surgery, and I don’t mean just my first pheochromocytoma surgery… I mean ever! Here I was, nineteen, as healthy as can be except I am going to be having major surgery to remove a deadly tumor. Seriously?!

So now that I had a endocrinologist on my case, it was time to prep me for surgery, this in the pheo world means you get drugged intensely with alpha and beta blockers. (Blood pressure and heart rate)

I was elated, I got a two-week break from the hospital I had been a prisoner to for months!

 

It was the day before my operation, all the way through this 4 month hospital ordeal.. I wouldn’t say I remained strong, I would say I just lived like my normal self and would not allow anything to get in the way of my happiness and positivity.

Going up against something so powerful, is so surreal… it’s as if you have every single horrifying outcome playing in your mind and you can’t turn it off. Surgeons amaze me and terrify me all at once.

Serge and I had been dating at that time about 3 months, and he says to me “I’ve never seen you cry, this whole time I have been with you through this, and not once have you cried”

I thought about this, he was not only right, but I couldn’t remember the last time I had cried in quite some time. I simply say “I don’t cry”

He looks at me, or I should say into me, deep inside of me, grins and says “You know it’s okay to cry, especially right now. It is completely normal, it will feel good for you to cry”

I cried that night, an all-consuming, ugly cry face, cry. It felt wonderful, he was right. I was going to have to get used to someone being as right as me all the time 😉

The next morning we drove back to the all too familiar hospital and go to pre op. Strange, being in a room full of other beds waiting for an operation. I read my cosmopolitan, shut out the entire world… and gave into the exhaustion. The next time I would wake up, I would be rolled into the operating room. This is it, this is the beginning of my new life.

We enter into the OR, it’s not like the movies.. you don’t have bright lights shining into your eyeballs and everyone is looking down at you while you drift peacefully into the abyss of anesthesia. You’re actually quite a bit more involved, while everyone is hustling about preparing to cut you open, someone is always speaking to you. I don’t know if every surgery is like this, but my anesthesiologist was doing a great job distracting me from everything going on around me. Asking me crazy questions about my favorite food, we were arguing about whether or not meat is delicious. I told him about the time I cut into a steak and it had an artery left in it and the blood exploded into my face. I didn’t realize I would later be like that steak I was explaining, yeah I took it there. Gross, Miranda.

They hooked me up to what felt like twenty different devices, they stuck an epideral into my spine which I was told I would be grateful for later, (we will see about that)

So it was time to put me under, this is where I lose out on watching what must have been quite a riveting show. I do still wonder if the OR had a gallery, like the one’s in Grey’s Anatomy. People eating their lunch while looking at my sexy adrenal gland and tumor be removed, yum! To each their own I suppose.

The plan: remove my soft ball sized pheochromocytoma safely without any further damage, remove my adrenal gland which is attached to the tumor to be sure there is no bits of disease left in my body. Procedure will be done laparoscopically, essentially 3 holes (for the cameras) and one small incision over the groin to remove the tumor and adrenal gland. Easy peasy!

The execution: The moment the cameras entered into my body, I had the exact opposite of what they wanted to happen… hypertension crisis (BP sky-rocket) my pre op blood pressure of 100, was now instantly in the 200s! Uh oh… time for anesthesiologist to work his magic… okay we’re back in the clear, let’s continue. As my surgeon is directing these cameras around my abdomen to get a look at my tumor, he begins manipulating the tumor to slowly remove phephe. Oops, another blood pressure crisis, I never promised to be easy!

Here’s the thing with this type of surgery … If you’re reading this, a small tumor can be operated laparoscopically, but a tumor of this size should be removed with an open procedure. Due to the size and danger of the tumor, it needs to be visualized and manipulated safely with an open procedure. SO, for those of you who are undergoing an adrenalectomy for a pheochromocytoma – words of wisdom 👍🏼! …

This is when they realize my IVC has been nicked, just a little baby cut. No big deal, just kidding.. ha ha.. huge deal

that big blue one... eeek

that big blue one… eeek

So now we still have the tumor and adrenal sitting pretty, and a bit of an issue with the blood filling up my abdomen from that small nick. So they put some sugar type something on the cut, just to buy some time so they can do what they came in here to do.

Unfortunately vena was NOT having it… so the temporary putty comes off and now I am just hemorrhaging all over everybody                           (I told you I was going to be like that steak) and they simply cannot continue because... I die.

I truly don’t know why I had to be such a drama queen, I mean dying? Gurrrrl, get it together.

After several failed attempts with blood transfusions, I’m still pretty dead. May I add you’re not allowed to wear makeup or nail polish in the OR? So now I’m dead, and plain. You have GOT to be frigging kidding me. I will not die basic.

Now I’m not a doctor, so I can only explain this part based on my recollection of what they told me, and what I later read in the operating report…

Those 3 little baby cute holes I was supposed to have… were now abandoned. They took that surgical steel scalpel and sliced my entire rib area wide open, from mid abdomen all the way to my back. Trigger happy much? Hahah ok too much. So they opened me up with some contraption that I guess pulls your ribs open, (ow) so that they can get access directly to the heart. I guess then they took out the paddles, yelled CLEAR and zapped my little ticker like it was nobody’s business.

Can I just say…. I’m pretty bad ass.

So after THREE entire minutes, I guess I was like go back go back don’t go into the light, and I had a heart rate again. WOOOOO!

So now this surgery has lasted forever already, I’ve died, and my entire chest cavity is exposed to the world, and I still have not gotten phephe taken out of me. I think the surgery was supposed to last about 2 hours, but it ended up being about 5 and a half roughly.

Keep in mind, vena is still not fixed at this point, so that’s when the vascular guys came up and did their thing. Remember that dance reference? This is kind of like… ballet, and then krumping, and then the tango. So they fixed that pesky vein that caused all of this trouble in the first place, and FINALLY removed phephe and my adrenal.

I will add, no.. I don’t recall seeing a light, nor did I have an out-of-body experience. It is very possible something unexplainable could have happened, but I was under so much anesthesia, it would be next to impossible to have any sort of recollection… so I would be making things up if I said anything further.

So I wake up, to my poor mom and dad who have been freaking out for the 3 extra hours, who’s just been told their youngest fabulous daughter had died but just kidding she’s coming out soon to go into intensive care so you can only see her for a minute. I also see Serge, who looks as if he’s never been happier to see ANYONE, and I mean ANYONE, god bless him. So I slur all about how I need to go to mexico and just love everyone so so much and ok bye bye now.

Waking up, truly waking up from such a traumatic surgery… is very shall we say challenging? Your mind doesn’t work, because you’re so heavily sedated. However when you wake up and are in the pain I was in, you kind of just want to leave your body and never come back. Later to realize my epidural that was supposed to be numbing that excruciating pain I was feeling hot off the press, had somehow come out of my back, and was just shooting all of its medicine goodness onto my bed. So not only was I not getting the drugs, it was making my back all wet and uncomfortable because I couldn’t very well get up and check what it was, so I blamed it on being a sweaty mess. Could I just please catch a break?

My body is just peeing whenever it wants into the catheter, my pain decides it won’t go away no matter how many drugs they give me, and my whole body is swollen like the Michelin tire man. Talk about having no control, a feeling I was NOT used to.

I somehow managed to walk within a couple of days, well you are forced to so you don’t get blood clots. I was walkin’ around in my sexy white hospital socks, thinking if I ever have to do this again, just kill me.

My first shower was sitting down on one of those little plastic medical chairs, it was the most heavenly feeling. For over a year I couldn’t shower in hot water as it would make me feel like I was going to die from the adrenaline attacks… and here I am, sitting in this hospital shower with a nurse watching me and making sure I am okay, and I am just loving my life feeling all of the nasty surgery smells wash off after a few days of being bed ridden… bliss. It was then I realized I would no longer have these symptoms, I would no longer be scared to shower, exercise, go out in the heat of the summer, be able to walk around a mall without sweating profusely suddenly and unable to control any of my body. I was back in control, and after this shower I was going to reclaim my old self!

So what did I do? Attempted to blow dry my hair and make myself look fabulous! Okay a bit early for that, as I couldn’t even walk yet or go to the bathroom or shower by myself, so Serge (god bless him) figured out to the best of his abilities how to dry my hair and straighten it. I felt… new

Now before I show you the horrifying pictures of the surgery aftermath freshly bandaged, I will say this:

My surgery was in 2010, and for the last four years… I have been in pain. A pain that is indescribable a pain that emanates from the inside out, my insides physically never stopped hurting. My skin never healed, my nerve endings never re-attached. I am left with an entire side of my mid section that I cannot touch, because it is numb, and hypersensitive, that even just clothing hurts.

Remember how I said I would never ever do this again? Well… prepare yourselves for round 2, happening at a hospital near you in May. This would have been my five-year pheo free mark, I was almost there! It is absolutely terrifying to think about them re-opening all of my old wounds, and being in even more pain than last. 

Now, wanna see my amazing battle wounds?

Pheo VS Fabulous

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9 thoughts on “My first surgery

    • It was never diagnosed as anything specific directly to me, I’ve read in my medical reports various names for chronic nerve damage and post operative pain but nothing that stands out to me. My NEW surgeons for the upcoming operation however did say I should have been in a pain clinic years ago, and will be arranging it after my upcoming surgery as they are going to be working on the exact same side 😢

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      • Leslie has an amazing doctor. He’s a no BS type of guy. You should talk to her. Most pain clinics take years to get in. Not him.

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      • My doctors have no issues giving me anything for pain, I just don’t want to always take narcotics. I don’t respond well to the other forms of nerve medications etc – So I’m left with just the alternative ways of healing, good old time and baby steps lol. Is he a GP?

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    • Hi Minnie, I live in Canada – and I am treated out of Mcgill University Health Centre (MUHC) – this link to an article actually discusses my team who treats me. The type of surgeon you may need could vary from the type of surgeon I would need for example based on where your tumour is located, but you would certainly need an experienced endocrinologist – one that is familiar with pheocromocytomas. May I ask where you are located? Our Facebook support group that is linked in the article, has a pretty good break down of local surgeons, and endos who are available in each area. https://muhc.ca/our-stories/article/fabulous-despite-the-odds

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  1. I’m 57 and will behaving surgery for a pheocromocytoma probably the end of march or the first of April. I’m in a lot of pain but from what I read about those tumors nothing ever mentions about this pain I have. I’m pretty nervous about surgery. My legs are very weak already I did have fractured femur bones and really never gain all my stringht. That’s been 3 years ago. I’m hoping I will be pain free and my legs gets stronger after this surgery I know I won’t feel better right away but just hoping I’m able to walk again with out crutches. Scared and nervous Joan McGilton

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    • Hi Joan, these tumors are so individual – the symptoms can vary greatly from one person to another, you will notice there’s nothing ‘normal’ about them! One thing I can say… almost everyone you will speak to after surgery will tell you they are so grateful to have had their pheo removed, nobody wants to have this horrible thing in their body. If I had a choice to have it gone, I would, that’s for sure. I don’t know about the pain you have, but I do know you will certainly feel better than you do now – so you can hope for that, and that’s already something to look forward to.

      Sending love, strength, and plenty of fab your way in preparation for your operation ✨

      Miranda

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  2. Hey… well not all the results have come back yet but, guess what… I’m positive I am suffering from this RARE tumor… I was born with a RARE metabolic disorder of the liver.(Crigler Najjar Syndrome) then had a liver transplant in 2011 at th age of 16… what a RARE case for a 16 year old!:) i still suffer with nerve attacks and numbness at th site of my 14 inch incision. So now forward 6 years later and I have uncontrollable high blood pressure, lower chest and back pain so much adrenaline, and anxiety! I’m only 22 and I am facing another RARE surgery. God be with me😇

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