A Pump Size Rabbit Hole

rabbitholeI disappeared for a bit. Gone down a rabbit hole and I have much to report from the under side. Most of what I have to say isn’t a positive, but I’m going to say it because I hope it will fall onto the eyes of people who need to read it and maybe it will save them from the nightmare I am surviving.

I had a SynchroMed II Programmable Infusion Pump implanted in April of 2013, full of hope. I spent the next two years testing different types of medications and levels of med in the pump with my Medtronic nurse practitioners at my pain clinic. I was able to drop my oral medications, but never completely get rid of them, the pump just didn’t manage my pain well enough. And, although I was told that there would be little to no side-effects with the pump infused medications, I had a growing list of side-effects: significant drowsiness, swelling, weight gain (20lbs almost immediately), urinary retention, sleep apnea, sweating, numbness, hair loss and withdrawal symptoms when I skipped doses on my Personal Therapy Manager (PTM). These symptoms increased with increased dosage.

I hit a wall with the side-effects and my ability to work and parent last fall. I spent some time talking with a pain psychologist and decided that I needed to get off of this ride. We started lowering my pump very slowly to see how it would effect my pain. For two months we lowered it 10%, My energy went up and my pain stayed the same.

Then my pump broke. MidJanuary, 2016 I was hit with incredible withdrawal symptoms. It happened to hit the same week I switched my sleep aid from 1-12mg/night Benadryl to Melatonin, so at first I though it might be some sort of Benadryl withdrawal. However, it kept going for over a week and increased in intensity. I was not functioning at all for a number of days. And then, as quickly as it came, it left. I could literally feel my pump medications flowing back into my body and everything was back to normal. I immediately called my pain clinic and they responded that it would be impossible for my pump to be broken and it was likely my oral medications. They said this without seeing me, or doing any sort of examination. I knew in my gut they were wrong, so I hit Dr. Google. I was shocked with what I discovered.

The pump I had implanted was recalled, in 2011, 2 years before my Doctors put it into my body. There are known issues with this pump’s battery and catheter function, it has a significant failure rate and requires replacement. I called Medtronic directly, they verified my research and recommended I go back to my clinic and insist that they test my pump for failure. They also told me that the testing (imaging) is only 40% effective. So I fought for my testing, my clinic did the ultrasound and, shocker, they couldn’t find the problem. Again, the clinic says everything is hunky-dory, no problem with the pump! I have to remind them that the testing is faulty, especially with positional issues. Throughout this time my pump seems to be turning on and off again randomly, leaving me with 4 surprise withdrawal days a week and then 3 days with medication. It is an impossible way to function. The most hellish thing I have been through.

The only way to look for positional issues with the pump is to open you up and physically look. I am on my way to getting rid of the pump, so my theory was that we should just take the damn thing out! My clinic insisted that they must ween me off of the medications for 10 weeks before they can remove it. They will not budge on this, not even after my GP offers to manage my oral medications to get me out of it earlier. Ten weeks of surprise withdrawal while working, parenting and just plain struggling to survive. Ten weeks of paying for pain clinic office visits, we hit our very high deductible before I’ve even had my surgery. I would have never put this pump in if A. someone told me it was recalled or B. someone told me that when it breaks you have to wait 10 weeks to get it removed. 

These pumps are not what the Doctors advertise. They may be effective for a small number of patients, but there are many of us who have had little to no progress with our pain control and significant issues with the pump itself. The pump takes a lot of time, money and maintenance when they are working: monthly visits for refills and programming. They keep you tied to the Doctor who did the implant.

Pain pumps are not a healthy way out of narcotics that they seem, they are still pumping your body with the same medications that you are prescribed orally and they come with side-effects, dependance and withdrawal just like your oral medications. In the end, all of these medications are running the same pain cycle in our brains, leaving us high and dry. After more than 10 years of pain, I am the most disappointed to discover this.

Next Tuesday, almost 3 years to the day, my pump will be surgically removed and by the end of the month I will be through the end of my medication weening process. I will never walk back into a traditional pain clinic. My GP and I are working on building a team of practitioners including a pain psychologist, chinese massage therapist, acupuncturist and nutritionist. She says if this works I have a How To book on my hands. I think, if it works, I have my life back in my hands.

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6 responses to this post.

  1. Oh, Malia, you should definitely write a book! I don’t know how you deal with all this, and yet stay so calm and put together. No one who’s been with you for any length of time would guess that all this is going on under the surface.

    Reply

  2. I hate that you’ve had to go through this. It’s so miserably unfair. You WILL get through it, though, and I do believe that you will regain your life. Big hugs to you.

    Reply

  3. “…..nightmare I am surviving.” I don’t know how it could have been said better. I’m so sorry that this is your reality right now, it’s difficult to fathom that a provider would expect anyone to tolerate this kind of life. I wish there was a way I could help. I am curious though about the clinic you went to? I ask because I am in MN too, and I have suspicions my clinic is a bit fishy…

    Reply

    • Thanks so much for your thoughts. Hope you are doing well. I’ve been going to MAPS Pain clinics. I’ve had my pump removed and won’t even return to have my post-op appointment.

      Reply

  4. Posted by Jon on March 16, 2017 at 10:25 am

    I’m sorry to read your story. I’ve read your other posts where you belittle and demean all pain physicians across the board. I’m sorry you had a bad experience but would caution you when lumping all pain physicians together in your vitriol. After reading your other posts, I would never agree to see and treat such a spiteful, negative and hateful person. I do believe your anger comes from a place of pain though. Good luck in your search. I think turning away from opioids and traditional western medicine may be your answer. May you find peace and rest.

    Reply

    • Thank you for your thoughts Jon. I find myself wondering if you suffer from chronic pain? Or treat it? This blog post simply states how my clinic handled my pump – I did not say anything negative about my pain doc or pain Physicians in general. I didn’t have to.
      I did have one amazing pain doctor and she left the field because her clinic wanted her to do invasive procedures that were not effective for most of her patients. These pain Docs have been extremely rare in my experiences – which is what this blog is about.
      I’m not sure you have read my posts about my amazing medical team – GP, OBGYN, GI, etc. They have been constant support for the last 20 years. Each has apologized for the pain “treatment” I have received and worked to correct the effects.
      If you find my wish for actual conversation and honesty from my doctors to be spiteful, I would have never asked you to treat me in the first place. Of course I am angry. I expect to be treated humanely. If you are a physician, I hope you can look beyond what seems to be anger in your patients to see our fear, very real pain and desperation to be heard.
      **I see you are a pain doctor. I am sad that someone who works with people in pain sees my frustrations as hateful. Your practice’s Yelp comments reflect the same experiences I have had with my pain clinics. I hope you are one of the good ones.

      Reply

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