Pain pump only as good
as the medications in it
I have been researching and learning about this as I go along. On the National Institutes of Health (NIH) website there is a good explanation of three different levels of treatment involving the medications used in the intrathecal pain pump. First-line treatment is use of morphine. Second-line treatment is morphine along with either bupivacaine or clonidine. (Clonidine is normally used for lowering blood pressure, but it also works synergistically with the other meds to provide nerve pain relief.) Third-line treatment includes all three medications: morphine, bupivacaine, AND clonidine.
I am fortunate that my doctor is an expert in the field of neuropathy and advanced pain management strategies. He specializes in the treatment of CRPS (chronic regional pain syndrome) and has had success with intrathecal pumps for severe interstitial cystitis and neuralgia. He recognized the extreme nature of my pain, and proposed the third-line treatment right off the bat. When I read the NIH guidelines I could see that I was extremely fortunate that I did not have to go through the first and second levels first! (See “Levels of Medications…” below.)
I will never forget the feeling of freedom those medications gave me on the day of my trial. For the first time in years I could get out of bed by myself, and walk without the aid of a walker or wheelchair. The ice packs we brought were set aside completely! I could walk down the hall, sit on chairs, and was laughing and crying with my family members! I had NO IDEA this was possible! I could actually feel the numbness in my pelvis, instead of my brain. I could walk straight, think clearly, and function – thanks to the anesthetic properties of the bupivacaine mixed with the other two medications. And the miracle continues to this day as the medications continue to drip into my spinal fluid.
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Morphine is used in pain pumps for back pain, but it is not the best — or only — solution for neuropathic pain. I have experienced this myself, and discussed it with other PNE patients. Opioids like morphine will make you sleepy, so that you can tolerate the pain better, but they aren’t effective on nerve pain, and don’t allow any quality of life.
Bupivacaine has been a magical drug for me. It is an anesthetic, so it numbs my pain, just as novocaine numbs a painful tooth at the dentist office. It is often referred to by its brand name, Marcaine, but as my doctors have always referred to it as bupivacaine, I decided I would too.
How to pronounce bupivacaine … say “boo-pi-vi-cayne”
Clonidine is a terrific “helper” medication when combined with these other two. My nurse said it increased the numb feeling I appreciate so much! (Actually, she described it in more medical terms….)
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Levels of medications from the National Institutes of Health (NIH)
Here is the full information on the three levels of medications used in the pain pump, excerpted from the National Institutes of Health website.
For the complete article, see http://www.ncbi.nlm.nih.gov/pmc/articles/PMC2080496/
Medications used in implantable drug delivery systems include opioids, local anesthetics, adrenergic agonists, N-methyl-D-aspartate receptor agonists, and other agents. Choosing among agents can be daunting for clinicians. The first line of treatment includes morphine and hydromorphone, and has clear support from data and extensive clinical experience. Recent studies continue to support the fact that intrathecal morphine provides good analgesia in patients with chronic refractory pain.
The second line of treatment may actually be chosen as first line in cases where an individual has prominently neuropathic symptoms. This consists of either hydromorphone or morphine with the addition of bupivacaine or clonidine. There is little data to confirm the safety of these mixed agents. Some of the expert panelists have concern regarding the hypotensive symptoms associated with clonidine. There is little evidence to support the efficacy of clonidine or bupivacaine as single agents.
Third line agents show clinical promise but both evidence and clinical experience is extremely limited. Third line drug combinations are chosen only after failure of first and second line drug combination treatments, either due to intolerable side effects or inadequate analgesia. Third line drug combinations include adding both bupivacaine and clonidine to either morphine or hydromorphone.
For a table showing specific amounts of medication used, see http://www.ncbi.nlm.nih.gov/pmc/articles/PMC2080496/table/T1/
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Am I worried?
So — I fall into the third category.
Am I worried about the concerns with the use of bupivacaine and clonidine? —– Nope!
Why is that?
If I compare my life before the pain pump against the possible downsides of these agents, there is no contest. The way I was going I didn’t even want to be here, in excruciating pain from moment to moment 24/7. I’m grateful that my doctor had no hesitancy in using this protocol.
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My doctor is Joshua Prager, M.D.
His wikipedia page includes the following credo. The moment I read it I wanted to meet this doctor.
Dr. Prager’s Credo:
“No one should ever wish for death because of the unwillingness of a health care provider or third party payer to provide the most appropriate medication delivered by the optimal route to provide pain relief without untoward side-effects.”
My rep at Medtronic told me that there are very few doctors like Dr. Prager, because of his knowledge and breadth of expertise with these medications and how they work on the central nervous system and brain. He is a leader in the field of implantable devices, including both neuromodulation and intrathecal pumps, and confident about the medications that will work for each type of patient. They suggested that I recommend that patients with extreme neuropathic conditions such as pudendal neuralgia and interstitial cystitis who are considering the intrathecal pain pump come to Los Angeles and consult with Dr. Prager if they cannot find adequate pain management where they are located. To me that sounds improbable for most people, but when I was at the end of my rope I was ready to go anywhere.
It is my hope that pain specialists in all areas of the world will learn more about neuropathic pain and the need for second and third-line treatment using anesthetics in intrathecal pain pumps.