What’s in my pump?

Pain pump only as good

as the medication in it

I have recently learned that the medications I have in my pain pump aren’t the most common ones. And only very specialized pain management doctors will offer these medications in the pump.

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, The other medication, 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 recognized the extreme nature of my pain, and proposed the 3rd-line treatment right away.

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.  I  will never forget the feeling of freedom those medications gave me on the day of my trial. For the first time in several years I could get out of bed by myself, without the need 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.

While morphine may work for back pain — it is not effective for neuropathic pain.

The problem with morphine, or any opiod, is that it is not effective for nerve pain. I have experienced this myself, and discussed it with other PNE patients. It will make you sleepy so that you can tolerate the pain better, but it doesn’t allow any quality of life.

How to pronounce bupivacaine … say “boo-pi-vi-cayne”

Bupivacaine has been a magical drug for me. It is an anesthetic, so it numbs my pain, just as novacaine 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.

– – – – – – – – –

Here is the 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/

– – – – – – –

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.
– – – – – – – – – –

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.
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5 responses to “What’s in my pump?

  1. Great thanks for this precious information. I am Iris a french girl suffering now for 10 years. 6 months ago I tried Neurostimulator implantation but It didn’t work. So I had it removed from my body. Next step is intrathecal pain pump (but in France, they do not put a pump regulated by a computor, just a bag in which the liquid anesthesic is injected and dispatches in the alcook canal). I am so scared to try another solution as I have been so disappointed with neurostimulation !
    Thanks again to continue informing us though you are better and would want to leave the decease behind.

  2. Hi Iris, I am so hopeful for you. The anesthetic for me has been a life-saver, as it numbs the nerves that cause so much pain. I can understand how scary it would be, especially after trying an implanted device with the neurostimulation and having it not work. Please let me know how you are doing with the pump. My heart goes out to you.

  3. Hi Lotta,

    How are you doing with gertrude ? Could you give me the full name of your pump (brand name) Medtronic …(figures). Have you asked Dc Prager whether he knows other doctors overseas, France for instance, who are using the same process to releave their patients.
    Thank you for all your replies and help.
    God bless you IRIS dixit aline

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