I 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.