My Intrathecal Pain Pump

This gave me my life back....

Also known as Intrathecal Drug Delivery Systems (IDDS) or Morphine Pumps, these implanted therapies provide round the clock, continuous infusion of medication directly to the intrathecal space, which surrounds the brain and spinal cord.  The medication goes straight to opiate receptors in the brain and dorsal horn of the spinal cord.  Oral, or systemic medications, have to be metabolized by the liver, go through the digestive process, and peaks and valleys of pain occur.  There is no constant pain control for the patient.  Oral medication is simply not effective for some patients.  My pump has been the best thing I've had done in the pain management world.  And I have tried many modalities to alleviate my constant pain.  Series of many epidurals, facet injections, botox injection, nerve ablation, spinal cord stimulator trial, two surgeries, one with a fusion.  I tried out anything that was safe and agreed upon with my physician.  I tried it all, and it all failed.  Then along came the IDDS, and after 30 years of severe pain, it has given me my life back.  Here is my experience with the intrathecal pump for chronic pain.       

THE TRIAL

In 2015 I had the trial for the implanted intrathecal pain pump.  This was done in the surgery suite of my pain doctor's practice.  He first injected a local anesthetic and under fluoroscopy, gave me a dose of morphine into the intrathecal space, which is the area that surrounds the brain and spinal cord.  I had to lay down afterwards for an hour to avoid a headache and to let the mediation absorb into the area.  That evening, and for the next 24 hours, it was the first time in 3 decades that I had NO pain in my thoracic spine, the area of most of my spinal pathologies and two past open back surgeries.  I was so excited knowing that we had found the perfect modality to alleviate my severe chronic pain.  At my follow up appointment, he submitted into my insurance for a permanent pump.  

PREPARING FOR THE SURGERY

Knowing what to do before surgery is very important, as it will have an effect on the lifetime of the pump.  If proper instructions are followed post surgery, the likelihood of a successful implant can be met.  There are very strict instructions--no bending, twisting, reaching, lifting more than 5 pounds, and these are followed for 3 months.  This will help the catheter to obtain and keep good placement, and for the pocket that holds the pump to allow scar tissue to form, keeping a good hold on the pump.  I put everything onto the counter in the kitchen so I would not bend or reach for dishes.  I got a grabber to pick anything off the floor.  I bought smaller items than usual in the refrigerator to avoid lifting more than 5 pounds.  Then the night before surgery, he prescribed Hibiclens to be used in the shower, using half the bottle, and the morning of the surgery, I used the remainder.  This is to help with a clean to sterile area of surgery.  Of course nothing to eat or drink 12 hours before surgery, only taking essential medications with a small sip of water the morning of surgery.  

THE PUMP SURGERY

My doctor came into the pre-op area and we discussed where the pump would be placed, he asked which side I usually slept on, planning placement for the opposite side.  Pumps are usually placed on one side of the lower abdomen, although it can also be placed above the buttock.  I asked him to place the catheter as high up the thoracic spine as possible, as my pain is thoracic in nature.  Then it was time for surgery.  He made a pocket in my lower right abdomen to hold the pump.  He then tunneled the catheter attached to the pump, from the front abdomen around the side, to the back of the spine.  Making an incision into the intrathecal space, the catheter was then advanced up the spine, to the level in the thoracic spine that would give the most pain relief.  He closed the pocket holding the pump with staples, and used surgical glue to close the inch-long incision in the back.  I had the expected post-surgical pain while in recovery, and felt pretty darn good when I left the hospital.  He originally put Prialt in the pump, a non-narcotic, sea snail venom that is one of two medications approved for use in the pump.  The other approved medication is Morphine.  I went home and was tired of course, and just went to bed and slept the rest of the day.  

POST-SURGICAL PUMP RECOVERY

The next morning I sat gingerly on the side of the bed and felt the oddest sensation having a foreign object in my abdomen.  When sitting or laying down, the pump hit my ribs and was very uncomfortable.  I could not sleep on the side the pump was on.  My abdomen was very swollen, as was to be expected, but I was surprised at just how much swelling there was.  I could not take a shower for 5 days.  The pocket incision was closed with staples, and over the incision was a yellow material that was the exact size of the incision, with a larger dressing over that.  I changed the larger dressing at prescribed intervals.  The incision over the one inch area he put the catheter was closed with surgical glue and would come off on it's own.  I observed all the restrictions, and was very careful with any movement as instructed.  

About a week after surgery, the abdominal swelling had decreased.  I went back at about 12 days to his office and the staples were removed.  Although still getting used to the feeling of the pump in my abdomen, the pain relief was amazing!  I was able to drive short distances with a towel folded over the pump pocket area at about 3 weeks post-op.  One month passed and the pain was managed well, with times that it returned and I had oral medications for that.  If there is a 50% reduction in pain levels, the pump surgery is considered successful.  Over the next month however, month 2, the pain started to return and I scheduled an appointment with my doctor.  He told me that Prialt is "either a homerun or it's not", and he switched out the Prialt for Morphine, which I have in my pump to this day.  The Morphine has been excellent pain relief for me.  He gave me a Patient Therapy Manager, or PTM to give myself preprogrammed bolus doses when needed.  This made a huge difference.  I got through the next month, and at month 3 post-op, my restrictions were lifted and I could move as desired.  Over time, the pump 'sank' into the pocket and it no longer was felt on my ribs.  It is amazing to me that I have a one inch thick, three inch across pump in my abdomen and I can sleep on that side without feeling it.  That took about 2 years to get to.   

             The communicator, PTM smartphone and the pump

REFILLING THE PUMP 

I go in for refills about every 2 1/2 months.  I have a Medtronic SynchroMed II Pump.  The size I have is a 20cc reservoir.  The old remaining Morphine is pulled out with a syringe, and new medication is pushed in.  There is a port on the face of the pump that is accessed to do refills.  It doesn't really hurt, as that area is numb and a good provider can stick the needle in without difficulty.  The pump is 'interrogated' at each refill, to get the information from the pump.  I hold a programmer over the pump which is read and gives the information to the main computer.  Changes are made if needed, done by inputting pump amounts and dosages.  The refill is done and I hold the programmer over the pump again which reads the new medication amounts and any changes.  The PTM I have reads the pump information when I need a bolus dose. It also tells me when the alarm date is, which is anticipated and an appointment for the next refill is made a good week before the alarm date.  There are two types of alarms, one for low reservoir, and one for battery life.  If managed correctly, I should never hear any alarms, and I have not after 9 years.  The battery life is 6-7 years and the pump needs to be replaced. 

REPLACING THE PUMP

In 2022 it was seven years I had had the pump, and it was time to replace it.  The catheter did not have to be replaced which makes a huge difference in post-op restrictions.  I have a newer type of catheter that allowed this.  For 2 weeks I was under minimal activity restriction.  For 4 weeks the instructions were no exercise, no bending, reaching or lifting above 5 pounds.  The original incision site is used to open the pocket to place the new pump, avoiding another scar.  The same surgery instructions applied, and Hibiclens is used in a shower the night before, and the morning of the surgery.  We did not need to discuss much in pre-op, my doctor came in and we chatted, we didn't need to pick placement this time around, it was already done for us!  It was an easy surgery, and post-op pain was greatly reduced this time around.  This pump is good for another 7 years, I will be due for another one in 2029.  

LIVING WITH A PUMP

I barely notice the pump anymore.  It has taken the bulk of my pain away, it has reduced it by 50%.  I have the PTM to give myself bolus doses.  I hold the communicator over the pump with the PTM smartphone reading the information.  When it is at 100%, I can just press the 'deliver bolus' and it is given.  It then locks me out until the next prescribed bolus is available.  At my last refill, he increased the bolus doses, adding one more per day and increasing the medication amount.  The pump medication, in my case Morphine, is 1/300 the amount of oral medication.  That is huge and is the beauty of the pump. My doctor says I am on a micro dose.  Although all pump medications are micro doses, mine is very low.  Looking at my PTM right now, the infusion is: Morphine Sulfate 0.3888 mg/day.  That's over 24 hours!  For comparison, long-acting oral Morphine is commonly given in dosages of 15mg, 30mg, 60mg and 90mg a day, up to 3 times a day.  Immediate release oral Morphine is commonly given in 5mg, 10mg, 15mg, 30mg, up to 4 times a day.  You can see there is a huge difference between oral dosages and intrathecal.  My bolus doses are: Morphine Sulfate 0.0400 mg, 2 boluses in 8 hours, max 3 boluses per day.  I usually use 1-2 a day if needed.  There are times of the day I know my pain will increase, and it can be situational, such as after being physically active, carrying things, extended standing.

 If you need an MRI, your doctor needs to know.  So does the MRI facility.  Your pump will stop running during the test, and should start again when it is done.  You need to go in to see your doctor after the MRI so they can make sure the pump is running again and everything looks good.    

The pump has been an absolute Godsend.  It has changed my life.  After living with severe chronic pain in my thoracic spine for decades, I can take a breath now.  I don't cry because of the pain.  Depression has absolutely dissipated, that was caused by living in pain every day, every moment.  That pain wears on you, it grinds you down.  Looking to the outside world like I was fine, made it even harder.  I tried so hard to live life like normal, but I just couldn't do it.  It changed me.  There were many days I didn't know if I could go on living in the amount of pain I was.  Imagine if you have had a surgery or a bad injury, and the pain doesn't go away when it is supposed to.  It's there every moment of your life, and you are expected to perform all the daily functions.  No one knows you are suffering.  Many chronic pain patients express a feeling of isolation.  Sometimes we are ridiculed for our use of doctor prescribed pain medications.  All we are doing is trying to live a life as pain-managed as possible, we know we will not be pain free.  Some pain patients take their own lives.  I have such damage to my spine from a severe rollover car accident and subsequent spine surgeries, I have been told for years that I will always have pain.  Pain I can deal with.  But pain that is incessant and constant despite the many modalities tried for pain relief, was something that was becoming an emergency.  But because I had had the pain for so long, it was never treated like an emergency.  Just because the word 'chronic' is before the word pain, does not mean it is any different than acute pain.  It is simply acute pain that lasts for days, weeks, months, years.  Now that I have experienced an acute femur fracture, I can liken my old spine pain to that, but it doesn't get better with surgery.  My doctor took one look at the fracture surgery X-ray and said, "You know that this is going to always hurt."  Oh well, it is a different kind of pain and one that I am okay with at least at this point.      

If you are considering an intrathecal pain pump, I encourage you to investigate into it.  Ask your doctor if they think you are a candidate for the pump.  If you are prescribed oral pain medications (no matter what class they are) and are not getting good relief, a pump may be your answer.  A trial can give you a good idea of how the permanent pump may work for you.  If you have any questions, leave a comment and I would be glad to discuss this with you.  You are worth a life of managed pain.                      

Gentle Hugs....and a tolerable pain day.

The 66 Mile Stalker

Stalking is a pattern of unwanted contact or behavior that leads someone to feel upset, anxious, or scared for his or her safety. (Psychology Today) 

Stalking is engaging in a course of conduct directed at a person that serves no legitimate purpose and seriously alarms, annoys, or intimidates that person. (Merriam Webster)

I wasn't sleeping well if at all in that period of my life, and was alerted to a text at 4:30 am while at my son's house. I was spending some time with him, and had left my place (not the first time) after being screamed at, raged at, humiliated, and I felt very frightened.  I felt frightened quite often in those days.  My instinct was to get away from the very danger that was residing with me.  I needed to be in a loving, calm environment, and try to make sense of what was happening to me. The fact I was not home, and was with my son, made someone very jealous and angry.  The fact that it was family didn't matter.  Narcissists/Abusers do not like the focus of their partner to be anywhere but on them.  After all, how can abusers do what they do best if their target isn't there?  I grabbed my phone and saw that the text said my son's parking gate remote was on his front porch.  I was instantly confused and when I saw who it was from I was even more so.  It was from my (then) boyfriend, who should be at our house well over an hour away.  I sat up and my heart began to race.  In autopilot, I texted him and said, "Are you here?"  I received no answer and I went to the front door and looked out the window, seeing no one I opened it up--sure enough I found my son's gate remote to his locked and gated parking area laying there on the welcome mat.  It took me a minute to realize that the remote should be in my car, which was parked in that gated area.  Why was it sitting out on the front porch?  And why had my boyfriend sent a text telling me exactly where it was, moved from inside my car?  I had thought a couple hours earlier that I had heard his loud truck out in the parking area but quickly pushed that thought out of my mind, for why on earth would he be here?  And at that time of the early morning? 

I started feeling afraid, scared.  Heart beating faster, I woke up my son and told him of the text and finding his gate remote on the front porch.  He and I walked out back to the parking area to my car.  As soon as we got close, I could see that something was wrong.  I used my key fob and unlocked the doors.  When I opened the drivers door, a bunch of stuff fell out.  What was going on?? 

Apparently, my boyfriend had taken a bunch of my belongings from our house, packed them into his truck, taken my other key fob that was in my jewelry box next to the bed, driven 66 miles to my son's house, climbed the fence to get into the parking area (which was tall and had barbed wire on the top) accessed my locked car with my spare key, let himself out of the parking area in my car to wherever his truck was parked, then transferred all the items he'd packed from his truck into my car, drove my car back into the parking area using the gate remote, parked my car, again let himself out of the parking area using the gate remote from my car, walked to my son's front door, laid the remote on the doormat and texted me that the remote was on his welcome mat.  

Now if that doesn't make your head spin.... 

On top of the craziness of all that, the items he had chosen to pack my car with were so random, things I absolutely didn't need--I certainly had not asked for any of them--but things like heavy nursing textbooks, lamps, bathroom rugs, and more boxes of books.  On the very top of the pile on my driver's seat was the toilet scrub brush--can you say Passive-Aggressive?  Or was this crazy act simply pure aggression? 

While my son and I stood in shock staring at all of this, I found myself feeling scared and very nervous.  I didn't know if my boyfriend was somewhere watching me.  I looked around the best I could to see if I could see him or his truck, and told my son I wanted to go inside, that I was afraid.  Of course my son was upset also seeing all this and gave me a big hug, telling me it would be okay, that I was safe there with him.  I still felt as if we were being watched.  

My boyfriend knew that I was physically unable to move all of these heavy items out of my car and my son had to do it, moving it all into his living room.  The front seats, back seats and trunk were all packed full. I had to use my car that morning and needed it to be cleared out.  The ridiculous actions he had taken only served to confuse me.  I was living in a constant state of confusion, trying to make sense of things such as this, while being abused verbally and psychologically.  (The physical abuse was yet to come.)  The fact that he had stalked me, taken the time and physical exertion to move my belongings into his car, driven 66 miles up to where I was, climbed the fence, unloaded them all into my car and leave a text for me in the wee hours of the morning was very frightening and disruptive.  If he had intended for me to feel this way, he had succeeded.  The thing that kept going through my mind was that he had over an hour of driving to cool off, to change his mind.  To choose to not go through with such an outlandish thing.  But 66 miles did not deter him.

Who does things like this?  What is the point, the end game?  Was he saying that because I was not at home with him, that I might as well have some heavy nursing textbooks to peruse?  Maybe I needed a toilet brush?  To this day, I can say that his actions that early morning, were the strangest, oddest events that I have ever experienced.  As I looked in the boxes, I saw what he had attempted to do. The books were arranged —he took time and he thought it out.  This whole extravaganza took him hours.  On the top were any books I had that were psychology related topics.  A book about women’s hormones. One about a woman and her fight with bipolar illness. (By Dr. Kay Redfield Jamison—a brilliant woman.) He took a LOT of time picking these out to place on top so they’d be the first thing I saw.  My psychology textbooks from nursing school laid on top, next to a book about Chronic Pain and Depression.  It was as if he was there, yelling “Look at all these, you are crazy” his one of two favorite words to yell at me during his rages, and “You are bipolar” (the other favorite) yelled very loud for humiliation purposes.

I will write more about living with a narcissist/abuser, there are red flags that if identified, and caught in time, could absolutely help someone in the early stages of a relationship with these people, possibly saving them months, years of suffering.  Reliving that early morning by writing here, has awoken a state of anxiety that I experience when I spend more than just a little time on those days.  It's not good for me, and I worked through these things years ago.  I am safe and I have healed.  If I tell someone about this event, they just stare at me, asking, why?  They can't wrap their head around it.  And I have no answer.  A dictionary can define a stalker, but it’s very hard to understand someone who does that.  I will never have an answer why he did it—he would not talk about this, as with many other things.  He would get angry and defensive, then proceed into either the silent treatment, a rush of verbal rage, a healthy door slam, or another personal fave of his, leave in his loud truck with a nice tire squeal for added impact.  As hard as I try, I will never understand the 66 mile stalker.      

Gentle Hugs....and a tolerable pain day.