Surgery #8

They came to get me that Friday evening. Transport that is. Two women wearing nets on their heads, chatting the whole time about their lives. As they wheeled me into the elevator on the 12th floor, “bump” one of them called out to me. The pain was so overwhelming, shooting through my lower back. My back that had been cut open two days earlier to stop my leaking spinal fluid. Here I was having to come to terms with another surgery. Was I avoiding reality? In denial. Most probably. 

We get to the large pre-op room and I am placed in a little cubicle. Two men come forward. One steps close to the head of my bed and informs me that he is a graduate student and has to ask me some questions. Ok I think, here we go. And then he stupidly asks me if I have ever had any surgeries. Umm hello? Are you for real? Have you even read my file, I ask him. He steps back as if a wounded puppy and then the next guy steps forward. 

Now this guy looks more seasoned. Not his first time at the rodeo. I ignore him and watch the TV above my head as it silently plays Will & Grace. Alex is his name. He has a faint Russian accent and informs me that he is the anesthesiologist and apologized for his acquaintance. He clearly sensed my frustration. Alex is one of those doctors who emanates bedside manner. He stood there holding my hand and chatting as we waited for my operating room to be ready. He was trying to rile me up, kept telling me to curse if I felt like it. We schmoozed about his family and career and my past surgeries, good experiences and bad. I felt validated and listened to. 

Finally the time had come to head to the operating room. They asked me if I could scoot from my hospital bed onto the operating table. I find that table laughable. How is a person meant to actually lay on that tiny board without falling off? I always ask what a fat person does. The operating room staff snicker at my questions and sarcastic comments. I try to wiggle my way but cannot maneuver or bend my back without screaming in pain. Alex and the grad student grab my arms and lift me onto the table. Holding a mask over my face and reminding me to breathe deep breaths. It’s not working, I am still alert. I feel the needle puncture my hand as they search for a vein for a second IV. I wince and Alex grabs my hand tightly while gently rubbing my forehead and whispering that all will be ok and I am doing great. 

That is the last thing I remember as I drifted off into a silent reality. I woke up less than two hours later as they pulled the tube out of my throat, me vomiting everywhere. Wheeling me directly to postop, it was then that recovery would begin. The last four months would no longer dictate my life. This surgery was going to be a solution. No longer the bandaid approach.

To be continued... 

Bruised

I have been told by many recently that I should share what I am feeling. Not hold back. Playing the martyr. Adult. The one always in control. I'm afraid. Afraid that if I share, I will never survive. I will unleash this flood of tears that is suffocated so far down in my soul that I will not be able to stop. I will drown if I open up.

The truth is that I am bruised. Inside and out. My skin is black and blue. The staples go way deeper than my skin. They puncture my heart. Each metal piece cutting deeper and deeper until I am almost see-through. Non-existent.

I'm tired. Worn out. Beyond exhausted. Too much energy needed to pick up all the pieces. Again. Put everything back together. Function. Would you be surprised if this time I just can't. That I just want to give up. To be done.

Have I not lived long enough. Gone through it all. Put in my time. Why is thirty not considered a full life. I've given it all. I've lived. I'm tired. No more.

Whatever. That's it.

Wake Up

I'm still here
And I am tired
I need a break
From life
From everyone
But mostly from myself
A minute
Would be nice
Of calm
Freedom
From reality
Life
Just one second
Pain free
No thoughts
Sleep
Why does my body
Betray me
Just need a break
Not sure how much more
I can take

You Don't Know Me

You think you know me but you don't.

Outside
I am a doer
A fighter
A leader
I am motivated
And loyal
I will be there for you
Generous
Kind
Loving

Inside
I am weak
A patient
I am in pain
I am scared
Lonely
I am a failure
Sad
Static
Immobile

I have officially been told that I have a medication overuse headache. So add that to my three other kinds of headaches and we could have a party. Oh wait, it seems my head is already having a party and I wasn't invited. So not only do I have bronchitis. But I also have to stop taking all meds for 5 weeks. Gotta ween myself off my addiction to pain meds. All the while suffering from a terrible withdrawal headache, attached to my migraine and occipital neuralgia. Not to mention my IIH. Which thanks to Hopkins, we have no idea what is going on. I just get to fall apart. And suffer in constant agony. And all the while, I have to function. Go about my regular life. Pretend like there isn't a war zone in my skull. That I don't feel like I'm being attacked by shooting fire. That I won't combust at any minute. From sheer pain. I have to go about my day like nothing is wrong and I am totally fine. Work. School. Volunteering. No biggie. When the truth is. Most days I want to curl up and shut down.

How could Hopkins dare tell me that come January, I will have to find a local neurologist to manage my care. And in the next sentence say my case is quite complicated. How could you dump me and expect me to manage. No one wants to deal with me. Have I become that patient. Have I become a nuisance. Life fading out of my eyes. Suffocating under the weight of my pain. Of my diseases. How can you tell me six months ago that you will admit me for testing and then not follow up. Tell me that there are no beds. No neurosurgeons on staff. That you are understaffed. And receiving over 300 calls a day. Aren't you the top hospital in the world. Innovative in your field. You say now that you will schedule me for DHA and ICP monitoring. Find out what is causing my chronic pain. But I don't believe you. You only seem to care when people are dying. Is that what you are waiting for. For me to completely fall apart. Puking my guts out. Unable to go to work. To school. Confined to my bed. My couch. You need me to get to the point before you will help me.

But do I even want to be admitted for testing. Shave my head. All to find out there's nothing wrong. That I am just a mess. Can't get my life together. Who will stay with me. Take care of me. I can't be the patient. The needy one. I am the strong one. Dr. Rabbit. My fear of being alone is overwhelming. Of never moving on from this chapter. Never being free. Pain free. I am desperately trying to live a productive life. Unemotional at work. Working my ass off in school. But this pain is overwhelming. It's debilitating. I cannot function. I cannot move. I cannot succeed like this. I am a shadow. Living half a life. With no relief. No break for the future.

You think you see me. But you have no idea.

The Real Story

I was diagnosed with Pseudo-tumor Cerebrei in November, 2009. Was admitted in Hopkins after a bunch of misdiagnoses. At that time, they found that I had a venus stenosis (which from my understanding, means a vein in the back of my head is small). They had discussed Stenting the vein. But it was decided to start with the medicine route. I also had third nerve palsy and 7th nerve palsy, with a lot of vision loss, specifically in my peripheral vision. I had received various lumbar punctures, all showing elevated pressures. And had a spinal drain. I was seen by Dr MA, a neuro-ophthalmologist at S and continue to see him. I was taking Diamox for fluid drainage and Topamax for my eyes.

In May, 2012, after taking myself off all meds because I didn't have insurance, i started having symptoms again and was admitted to SN hospital. There, I received spinal taps and decided to get a shunt. I did not want to go back on medication. My surgeon was Dr S, who inserted a non-adjustable peritoneal lumbar shunt. After my staples were removed, I began to feel much better and had been managing healthily for two year plus.

In October of 2014, I moved back to B and began seeing Dr A again. Presented with good visual fields and good vision. I also began seeing Dr MW at H as my new neurosurgeon to manage my case. He recommended that I meet with Dr DR at Hopkins to have a neurosurgeon familiar with my case in case of complication.

In July of 2014, I began feeling symptoms again. Headaches and nausea and after calling Dr W, it was recommended that I go straight to H ER. I was cleared by Opthalmology and never seen by Neuro. CT scans and X-ray showed nothing and I was sent home and told to follow up with my neurologist. Dr. W's office was very difficult to get a hold of. I was finally sent to Dr YC, a headache specialist and colleague of Dr W. With only a consultation and no testing done, she said that it was most likely not migraines and felt very certain that my symptoms were because of my shunt. On August 20, I went to H and had a lumbar puncture with contrast and then did three Shunt Patancy Studies over a period of 24 hours. A week later, i was seen by Dr R who confirmed that the shunt has malfunctioned and is not draining CSF. I am currently waiting to hear from Dr G's office in H to schedule a CTV. Dr R would like to find out if the I am a candidate for Stenting due to my Venus Stenoses before committing to replacing the shunt. I have not been able to reach anyone at Dr W office to get medication treatment in the meantime and went to my general doctor, Dr E R at S H. He prescribed Diamox and Zoloft and left messages for Dr W and his nurse practitioner CW. Dr R's secretary was informed by Dr W office that they no longer wanted to follow my case and felt that I should be seen completely by H.

So yeah...

Loving that Lumbar Puncture

I am blown away. As per the recommendation (or insistence) of my general practitioner, I have called a new neurologist. Of course the number I was given wouldn't take me to an actual person so I decided to go on the hospital's website and find the correct number. The doctor appears to be very knowledgeable in all forms of neurological disorders. There on the list of his special interest were IIH (Idiopathic Intracranial Hypertension) and Pseudo Tumor. Both terms I have become well acquainted with over the last four years.

At the bottom of the page is a link for an article written by an older woman about her experience with hydrocephalus and her life up until receiving her shunt. I don't know why but I am literally shaking after reading her article. Yes, her diagnosis is slightly different than mine and yes, she received the other (more dangerous) shunt operation. But her experience, the emotion in her story rings so true. It is the same story of how important patient advocacy is and what it feels like when no one takes your symptoms seriously. It is a battle of going to doctor after doctor, each telling you there's nothing wrong. Barely being able to sit up, wearing sun-glasses because the light hurts your eyes and puking into a bucket when you haven't been able to eat in days. Yeah there's nothing wrong. The Cat Scans, the iv's, the Percocet. Not helping. Making things worse. When all you want is to be dead so the pain will stop. A miserable existence.

And then one day, you get this amazing test called a Spinal Tap or Lumbar Puncture. The doctor pushes into your lower back, trying to locate the right bone do shove the needle in. And then, after some misses (quite the painful experience), he finds the right spot in between the two vertebrae and second later, spinal fluid starts pouring out. There is so much fluid that he calls the nurse over to bring more vials to catch all the fluid. And then it hits you. Relief. You can tolerate existing. It is a moment of clarity. Of sheer happiness. No pain. No vomiting. Serenity. And then minutes after he's done, the pressure returns. Tolerance is instantly gone. Suffocation returns. The death wish arrives. Then, you get sent to get the Tap done laparoscopically. You get rolled into the room and you feel barely-conscious. After a few minutes of this extremely large needle positioned in your back, you become animated. You notice the nurse's crocks, comment about a house refinance another nurse is talking about, crack some jokes and get everyone rolling. Thirty minutes of pain-free relief.

I'm not sure why I am reliving that specific moment. But I don't think anyone can understand such relief. You know you have a problem when you crave a spinal tap. Any time I have spoken to med students or doctors and shared my love for LPs, they always look at me incredulously. It's so worth the pain of going through the procedure. It's worth the leg tremors, the zapping throughout your whole body. It's worth the possible paralysis. Anything for the momentary relief.

Fast forward three years and you are once again on the gurney, being wheeled into the emergency room. Symptoms are back. Different state. Different hospital. Limited support system. But it's back. The vomiting. The vision loss. And this time you know. You tell the doctor that all you need is an LP and all will be well. You are craving the release, as if it were a chocolate bar. And this time, you make your own decisions. It is your life, your choice. You refuse to be put back on the meds. Refuse the side effects. You choose a quality of life, no matter what the (literal) cost. You choose the surgery. You are your own advocate this time. No one can talk you out of what you want. What you need.

A shunt was the best decision that I ever made. Yes, it was my choice. And while I'll probably pay the price for the rest of my life, at least I have a life. I'm am free. Pain free. I am functioning. The fluid in my brain no longer controls me. It is being managed. And no one makes decisions for me. No one tell me how to life my life. So now, I wait for the office to call me back. And I will go in to see the neurologist. This time, I have knowledge on my side. I have my story in my pocket. I will walk in with my own two feet, by myself. There will be no gurney. No wheelchair. No bucket to throw up in. No sunglasses. Just me. Me and my shunt.

Take that! 1 in 100,000!


http://www.hydroassoc.org/ha-updates/looking-back-moving-forward-six-years-after-my-shunt-was-installed/