Me and My Pump

14 02 2007

It was a yearlong process to get the intrathecal pump. I didn’t care that it would protrude from my left belly. In fact, the doc says I didn’t want it. I don’t remember. I was in so much pain I wanted to kill myself. I wanted to put Jax, my family, and my friends out of constant fear and worry. The pain was making me someone I’m not.

I tried different treatments including Botox injections to the pancreas. It worked a bit to freeze the area but the pain was still unbearable. I wondered how long I would live all the time. I got B-12 shots, continued with alternative medicine paths such as biofeedback and some quantum machine where I felt I was being put in an electric chair. The stress of getting to the appointments and leaving work was a hole other ball of wax.

Then we tried a neuro-spinal stimulator. This was absurd. The pain was overshadowed by my newly electrified legs. I went through a horrific series of hospital surgeries to get the trial put in. One of the docs even swore he’d turned the unit off when in fact he’d put the unit to the top level of it’s electric capacities. YIKES!! I screamed, squealed, and agonized through the torture of it. I felt I was no longer human. I felt subhuman.

Maybe it was that I knew I’d lose a few days of work so I’d literally work right up until the morning surgery. That meant going into surgery without sleep. I don’t recommend it, yet I did it before at least four surgeries (procedures).

The spinal stimulator was a no-go. I hated it. Eventually it was decided I would wait for the pump. I went down to having 4 days asleep per week. I was getting worse. I was so afraid of dying. At the same time I was still effectively running my office and going to client’s jobsites. This was insane.

[Post note: What I didn’t yet understand at the time is how RA fit into all of this. I didn’t know why I couldn’t feel better. Looking back I believe a lot of this awfulness was actually due to RA].

xoxo,
Sasha

PS: You’re currently viewing the first part of a series on my pump.  For more information about the pump and my own experience you can visit ME and MY PUMP II , PAIN PUMP PLEASE which is a letter from a reader and more info about the steps I took to get my pump. Also: RESOURCE GUIDE 2009-Home Page, and TIPS FOR YOU (which has many links at the top of the page).

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3 responses

23 06 2009
Glenn

Hi,

My wife is currently living with Chronic Pancreatits and has asked her dr. about a pump, but he seems resistant. What did you have to do to get one? From your searching, is there anything that you could suggest that she needs to do to get it quicker? (btw, does this pump the medicine directly into the pancreas; near it?)

Thanks,
Glenn

29 06 2009
typeawithra

Dear Glenn,

I’m so sorry to hear about your wife’s CP!! I am sure many people are curious to know the great questions you’ve asked! First, the intrathecal pump was surgically “installed” by my pain management doctor. He had to try less invasive things first such as a celiac nerve block using an injection of botox to numb the area. It worked a tiny bit (although I didn’t think so at the time – only upon reflection did I realize it had helped. Then he did a spinal stimulator next which is a electronic device that vibrates and the goal is to eliminate the pain by altering how your brain receives the signal. That didn’t work because it had to go to high to work which then caused my entire body to feel electrocuted at all times. Finally, after a year of intensive psychotherapy that my Dr required I do before installing the pump, I was taken into a brief surgery. The Dr. puts the Medronics-brand pump in your abdominal region on either the right or left side. My torso is super short so my pump hits my bottom rib and my top hip. It can be uncomfortable at times but NOTHING like pancreatic pain.

The intrathecal pump then has a catheter that goes out and up the open area of my spinal cord and stops right at my pancreas area. He gave me an extra long catheter in case i can have kids – although that is basically out of the question now. Anyhow, The pump delivers a numbing medication Bupivicaine (spelling bad I am sure) and the Fentyl and Morphine. It puts out tiny micorgrams of the meds which is awesome so that it not only avoids my liver but my brain, as well.

HOW DID I ET MY Dr TO PUT THE PUMP IN? Well, first question I’d ask you is what doctor are you asking to put it in? If it is not a pain specialist than you’re bound to get a no. In fact, I was about to get a stomach tube put in which would’ve destroyed my life but my Internist protested and begged for the pump instead. Also, my psychologist told the pain Dr and my GI that if i got the stomach pump I would very likely kill myself. Next question I’d ask you what city you are seeing this Dr in. If it is in a smaller sized town or city that is not forward thinking then the reality is that they don’t really know anything about the pump. You might seek out a larger med center pain specialist like Houston, Seattle, LA, and possibly NYC. You can always seek out help outside your city because there are no rules when it comes to living in that type of awful pain.

I’ve had my pump over 2 years now and I couldn’t have lived this long without it. Also, I was already in bed 5 out of 7 days of the week and I was miserable. Now that trauma has been lifted from my life.

I hope this helped and thanks for writing.
love,
sasha xoxoxo

11 05 2008
Living with Chronic Pancreatitis « TYPE A WITH R.A.

[…] loads of stories about getting a pain medicine pump in Feb 07 that literally saved my life.   [Me&My Pump I/Me&My Pump II].  Pancreatitis is more immediately life threatening to me then RA will ever […]

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