I realized that I've let some of you down by failing to post much more than links. For that I apologize, I owe you all some original content.
I decided to start out by updating you on hope I've been doing. Unlike most weekends, I didn't spend hours at the park, library, or historical society with my dad, wife, and daughter. Still, I'm in excruciating pain, as if I'd run a marathon. The clonidine isn't helping with the leg pain at all. Despite the fact that I can still walk sort distances and don't have paralysis, I know that I'll soon require a wheelchair because of the weakness and pain in my legs.
The opioids that my PCP (or anyone else) is willing to prescribe exclude three of the most efficacious medications, methadone, Actiq, & intrathecal morphine.
There's something that I've been considering that I am very much against overall. It has become extremely obvious that no one is going to come to my rescue. No one will prescribe what I need and no one is willing to manage an intrathecal pump on a patient like me. I am a high risk of litigation because when I die, there will be no way to prove that the tumor killed me, not the high dose opioids. Actually, the inadequate analgesia itself could cause my death (through stroke, heart attack, or even aneurysm) thanks to the constant overdose of cortisol and epinephrine/adrenaline.
I have many types of pain throughout my body. Most of it originates in my spine, brainstem, and/or brain. Most of the pain responds to mu-opioids. Unfortunately, my leg pain only responds to intrathecal mu-opioids and methadone.
Methadone is a mu-opioid, like morphine, codeine, fentanyl, sufentanil, alfentanil, oxymorphone, oxycodone, hydromorphone, hydrocodone, and others. Methadone is also a kappa-opioid and NMDA receptor antagonist. Both kappa-opioid and NMDA receptor antagonists are extremely effective in treating neuropathic pain. Contrary to popular belief, Neuropathic Pain DOES respond to mu-opioids, HOWEVER it requires significantly higher doses than other pain types. For patients, like myself, that were born with a high tolerance to opioids, all pain requires a higher dose of opioids, but neuropathic pain in patients who already require high doses requires higher doses than most doctors are willing to prescribe. Low dose methadone on its own doesn't help me with most of my pain and only partially reduces my neuropathic pain, but, when added to my fentanyl regimen, it almost eliminated my leg pain and somewhat improved my other pain.
For those of you that don't know, intrathecal pumps deliver medication into the spine (one layer deeper than an epidural). Unlike an epidural, they use opioids only or mostly opioids. They use little or no buprivicane, so you can still walk and feel your limbs. Morphine is the FDA approved opioid for intrathecal pumps (although fentanyl, sufentanil, alfentanil, hydromorphone, and methadone can also be used; hydromorphone and fentanyl are the most common off-label intrathecal opioids). ONE milligram per day of intrathecal morphine is ROUGHLY equivalent to
* 300mg/day oral morphine
* 180mg/day oxycodone
* 90mg/day oral oxymorphone
* 9mg/day IV/IM/SubQ oxymorphone
* 48mg/day oral hydromorphone
* 3-6mg/day fentanyl
* 125-250 mcg/hr fentanyl
While intrathecal morphine is 300x stronger than oral morphine, the side effects are not. I cannot tolerate 2mg of IV/IM morphine or 5mg oral morphine without my throat swelling up and a drastic increase in painful muscle spasms and my neurosurgeon knew this prior to my intrathecal morphine trial. He still decided to use morphine in my intrathecal trial. Even at 3mg/day (0.125mg/hr) intrathecal morphine (equivalent to 900mg/day oral morphine), I had ZERO side effects.
Back to my point, I'm considering making an appointment with the local interventional pain management doctor who treated me pretty well, despite his interventional only attitude.
I'm curious to know if any of you have any experience with injections for neuropathic leg pain. I'm afraid that it could make the pain even worse. I'm definitely against multiple longterm injections of steroids, but even a single injection of just the numbing agent (lidocaine or similar) carries risk. I'd love to read your feedback.
Speaking of feedback, I have been receiving reports of problems with Blogger's native commenting system, so I decided to switch to a third party system. The system that I chose is called Disqus. It does require login, but you don't have to sign up with them, you can login with your Facebook, Twitter, or Google account. You have to authorize Disqus to let you login with your social media account, but it's a onetime, quick, and easy. Please let me know what you guys think. Thanks.
If anyone would like to share their stories or ask any questions, please don't hesitate to email me or comment below.