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Spinal CPS

June 1, 2012

 

The CPS Alliance had another member join today. We have anywhere from five to ten new members join every week. Each person who joins has to explain why they want to be a part of the Alliance; that’s the way we can cut down on spammers. Since I am one of the administrators, I get to see the reasons that people give. Sometimes, thjey give a paragraph of explanation or so. Other times, it’s just one or two lines. Either way, I get to see all the miseries that have brought new members to our group.

The explanations that hit the hardest are the ones like we got today: “My husband has CPS since 2003. He had a spinal cord tumor that was surgically removed but suffered cord damage.I need support..”

My heart sinks when I read about a situation like that. For one thing, it’s from the spouse-caregiver, not the patient. The caregivers and family members can suffer tremendously as a result of having to live with someone beloved who is in constant pain. The pain causes depression and bad tempers, and that is difficult for anyone to live with on a daily basis – just ask my husband.

Then there is the fact that  this case of CPS was caused by a medical procedure. You would be appalled if you knew hoew many of our CPSA members acquired CPS as the ressult of a medical procedure. They wake up from the anesthesia with this terrible burning pain, and often the doctors themselves are mystified. No one warned them that this might occur – all too often because the physicians themselves never knew that is was a possibility. We actually have a whole family on our Charter Committee team, who are part of the CPSA because the 32 year old husband acquired CPS after a simple biopsy on his thalamus. Ending up with Central  Pain Syndrome because of a medical test or simple procedure is the very anthesis of the Hippocratic dictum to “First, do no harm.”

But the thing that truly causes my sadness is that her husband has Spinal CPS, because there are really no effective treatments for Spinal CPS.  Canavero makes the important point in his textbook that Spinal CPS and Brain CPS are similar in pain presentation, and in cause (a lesion of the somatic tract of the Central Nervous System). But they are completely different in the way that they can be treated. I believe in his conclusion, which is that the difference between the two forms of CPS is due to the two differing primary neurotransmitters that carry pain signals. The brain uses GABA to convey and inhibit pain signals. The spine, however, uses glycine for those function.

There are the drugs that we Brain CPS survivors can turn to: they are the drugs that are Gabanergic. I depend upon one, gabapentin, to hold down the hellfire, and I consider myself extremely fortunate to have it as a recourse. There are others:  vigabatrin, tiagabine, lamotrigine, pregabalin and others. As one study says, “Although originally developed as anticonvulsants for epilepsy, they appear to have wider applications for use in affective disorders, especially bipolar depression, anxiety disorders and pain conditions.”  As individuals, we may have to test-drive several of them before we find one that truly helps us. But we have them.

But from everything that we have shared on the Alliance board, and everything that I have read and googled, there appear to be no effective glycinergic drugs, that is, drugs that would affect glycine as a transmitter. So there are no drugs that can effectively control Spinal Central Pain.

Spinal CPS patients are left with narcotics such as morphine and oxycodone. Morphine intrathecal pumps that are installed directly into the spine are often of help, but there is often the risk of infections, or the pump itself can cause problems, and of course it needs to be refilled. It can work well for years, and suddenly develop problems. Many of our Spinal CPS members rely on Fentanyl patches, an extremely strong narcotic that was developed for treating the pain of cancer.

The real problem with all of these opiates is that they are sedating, as I found out when I was in the hospital last November. I was given intravenous morphine for pain, and, boy, did it make the pain go away. With the pain also went my ability to concentrate, my ability to stay awake, and, most of all, my concern about being able to do anything. To put it vulgarly, I didn’t give a f@ck about anything; everything was fine, as long as you didn’t try to keep me awake or make me think. I couldn’t follow an argument; I couldn’t follow a plot. I finally understood how it felt to be “on the nod.”

For me, it was only a few days of contented utter lassitude. But it must no way to live. It must be so stressful of any close relationship, especially a marriage.

Just imagining it makes me only more convinced that the Central Pain Syndrome Foundation has to be started, and soon.

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