Friday, January 25, 2013

and Finally some good news!

Today was the pain pump trial.  They moved it up after my last visit into the emergency room.  I was told that I needed to bring comfortable clothing and someone to drive me home.  My dear husband works at the hospital, so I had the nurses call him right after the procedure was finished. He loves me so much that he couldn't wait for them to call him and showed up just as it was finishing.

The procedure was a bit nerve racking. They allowed me to keep my clothes on (T-shirt and sweatpants) and took me into a surgical room right off of the pain clinic. The doc told me to curl into a ball so my back was rounded. I apparently am so limber that I curled up too much for him and he had me uncurl about half way! LOL  They then numbed my back and stuck a catheter into my spinal column. It was the weirdest feeling in the world. It wasn't painful, but it felt like an intense pressure and I felt an anxiety attack coming on. I remember asking them if they were finished, and they indicated that they hadn't even injected the medication yet. As they pushed the Prialt into my spine, i felt both a cooling and burning sensation at the same time. Then it was over. They wheeled me back to my room (where I was surprised to see my husband) and waited. I was told that I'd be there for about 2 hours while they monitored me. About a half an hour into waiting I began to feel my stomach pain decrease. Then it started to decrease at such a fast rate that I almost started to cry. It was an amazing feeling to experience no stomach pain.  I've lived with a pain on the 1-10 scale at about a 4 as my low level since I was diagnosed, and I could definitively say that my pain was at a 0 once the medication kicked in. The relief was extraordinary!  But then.....

About an hour after the procedure I headed to the restroom to relieve myself and experienced vertigo like I'd ever felt before. The room was spinning so much that I couldn't see straight. I don't remember how I made it back to the room, but as soon as I got back I began vomiting because of the dizziness. The nurses felt that it was basically the result of too much medication and tried to calm me down, explaining that I won't get nearly that amount of dosage if a pump is implanted. They were scared that because of this reaction, I would give up and not want to go through with the actual surgery. I told them to go ahead and schedule it - I wanted the surgery. I wanted the pump because that was the only way I could get the medication that allowed me to be pain free. I needed to get my life back and this was the first sign I'd had in a long time that would lead me in that direction. My dear husband took me home shortly after the vomiting stopped and I slept for the rest of the day in dreamland....

Thursday, January 24, 2013

Pain Pain Go Away Come Again Another Day...

Another ER visit...  I fought it really hard this time, but I just can't take this pain anymore. I have the visit with the pain clinic for the trial on Monday, but that seems so far away.  The visit left me in more tears that when I arrived though. I am now convinced that either they don't believe how much pain I'm in or they think that I'm a drug seeker. I don't want drugs. I just want something to get rid of the pain. I hate it that the amount of delaudid that they give me doesn't work. It's not my fault it doesn't work. This time I had a social worker come and talk with me. I think they were wanting a psychological evaluation to see if I really needed the medical help or if I was just seeking more drugs. I am not like that. I hate that someone even thinks that I'm like that. The first thing that the PA said to me after they admitted me to the room was "We aren't giving you any IV pain meds". I don't care. Just take away my pain. I wouldn't be here if I wasn't in horrible pain. Now you are making my head hurt on top of the stomach for not believing me. The only good thing about this appointment was that they spoke with the pain clinic and got my trial moved up to tomorrow.  As soon as they offered to send me home, I took it. I can't be somewhere where I'm being treated as if I'm a bother to them - as if I'm wasting their time - as if I am seeking drugs - as if there is no one here that cares about me.

Monday, January 21, 2013

Intrathecal Pain Drug Pump

I received a call from the pain clinic a few days ago and they said that after the doctor reviewed my chart and records sent over from my GI specialist, that the doc would like to meet with me and discuss the option of a pain pump.   I'd heard about them, but wasn't really sure what was involved. I did some googling and thought "this might be something that I could really do".

I met with the doc today and he told me about the Medtronic Intrathecal Drug Delivery Therapy. Basically, it's a drug pump that delivers pain medication directly into the spinal column at a continuous rate. The pump and the catheter are implanted underneath the skin through an outpatient procedure. The drug that they would be using is called Prialt and the best thing is that it's not a narcotic. Many of the doctors have mentioned to me over and over again that the narcotics that I'm on are also slowing the motility of my stomach and that I need to get off of them. This will help me do so.   They are going to schedule a trial run for me to test out the drug so I can be sure that 1) it will actually work on my pain and 2) that I don't have any allergies or side effects from the medication.

The pump itself is programmable, so the doctor can regulate how much drug I am receiving. They will most likely have to "play" with the amounts until it's just right for a bit after the surgery.  He told me that I can decide where I would like the pump to be implanted, and I have decided that if I get it, I'd like it on my left side, since I tend to sleep best on my right side. Because I'm skinny at this point, I'm pretty sure that the pump will be visible once it's implanted. The pump itself is about 3 1/2 inches wide and about 3/4 an inch deep. Pretty big compared to my tiny 108lb body.

I'm excited about this trial. It's been scheduled for Monday the 28th.