Hi David - my experience hope it helps. (I was not going to any opiate solution (pump or oral, unless it was last resort). Look into this for yourself
Hi, It's 4:00 PM and I'm back from getting the Prialt med injected into my spine. Other than a spinal cord headache caused by leakage of the needle that had to go through a lot of scar tissue at the base of the spine, the procedure went fine. I was pain-free an hour after the procedure for the first time since May. I am still at a tolerable level of pain now, even after an hour ride as a passenger in my van going over bumpy roads. I haven't had any opiate pain medication since 9 PM last night. I'm still wearing a Fentanyl patch (75). Dr. Kaufman was pleased with the results and we now have another option (a very good one) to evaluate in our pain management plan. He suggested we wait a few weeks for the results of our Lyrica application to the pain med mix. The combination of medications that work for me is strictly up to me to decide. I am hoping we can a solution without opiates. (OxyContin, oxycodone, Fentanyl, Morphin, neurontin, Darvecet) So, assuming the Prialt delivers dosages with the Medtronic pump enough to cover a 24 hour period, I won't need anything else. If I do, Lyrica seems like the best choice as an add-on for controlling the rest of the pain. Although these drugs are developed for other maladies (Prialt for MS and Lyrica for fibromyalgia) they are effective at certain dosages for the relief of neurogenic pain. I still may wind up with some opiates, but not near as many that would cause me to drool on my shoes. For the first time since May, I'm encouraged that we have finally found our way through this maze of Pain Management drug applications. I'm having no side effects from the Prialt, and it seems to be working fine for me. Thanks for the prayers - they work! Don't let what you cannot do interfere with what you can do! Billy www.langfoundation.org ----- Original Message ----- From: Billy Lang To: jamus ; Bud ; Tim Lang ; Lang, Matthew D ; Lang, Sean [PVTC] ; Gerard Lang ; Donna ; [email protected] ; [email protected] Sent: Friday, September 18, 2009 9:17 PM Subject: update on me Hi guys, Thought I would drop a note to let you know it's going on with me. Helps that I don't have to repeat it 10 times. I started developing pains in my lower back and hip in May. At the time they thought my hips were breaking down from 20 years in the chair. They describe pain medications and started me on the road to pain management. A few weeks went by and the pain came through the medications. The pain was pretty intense, measured on a scale of 1 to 10 as a 10. This put me into dysreflexia and off the ER I went. After they administered Delauded by IV, to alleviate the pain, The doctors there spoke with my Kessler doctors and decided to do a x-ray and bone scan of the right hip. Turns out, my hip is fine, showing no stress fractures or abnormalities other than moderate to severe arthritis. The x-ray of the lower spine (lumbar region) was another story, and they sent me home with OxyContin, and oxycodone. Before I could return to Kessler, the pain returned although the pain medications were being taken as prescribed. Back to the ER. Dr. there decided with Kessler collaboration to put me on a pain medication patch and use the other pain medicines as an adjunct. The pain returned after a week. Before going back to Kessler I had an MRI of my lumbar sacral spine resulting in: L1 -2: there is a right lateral posterior situation with this material which is encroaching on the right nerve root sleeve. There is this disc herniation. (The diagnostician erroneously reported that I had a laminectomy at this level. Never had it just looked that way on the films.) I have arachnoidtis from L4-5 and l5-s1 Levels. This is a bundling of nerve roots being compressed by bone and causing the pain. Kessler adjusted the meds and recommended that I see a neurosurgeon who specializes in solving this kind of problem. That neurosurgeon was on vacation and not available for three weeks. Saw his associate and he recommended simulation device which would be implanted in my lower spine and intercept the pain impulses and fool the brain into believing it's something else (like a low pulse). He sent me to a pain management doctor specializes in testing the stimulation solution. Upon looking at the MRI, Dr. Kaufman decided I was not a candidate for the neurosurgeon's recommendation. He did however offer a radical approach to manage the pain. At this juncture I've been told there are no surgical only solutions (like cutting the nerves). He wants to test me for implementation of a Medtronic pump with Prialt. http://www.prialt.com/Images/Whatyoushouldknow.pdf Dr. Kaufman was upfront with me. He said I would be the first quadriplegic that this medicine was to be tried on and he intended to publish the results. My initial research into this drug gave me mixed emotions. There have been some successes in patients with MS and other spinal maladies. There are also some side effect stories that are really tough, but it seems if you administer the drug dosages gradually, most can be avoided. He's doing his research now including reactions of the drug with the medications I'm currently on. He did say that before testing me with Prialt (they stick a needle into the lumbar area of the spine and deliver a dosage of medicine to see if the pain subsides), I would have to wean off the pain meds before the procedure. Don't know how I'm going to get through that. I'm hoping to hear from him soon. I'm hurting like hell and drooling on my shoes. Don't let what you cannot do interfere with what you can do! Billy www.langfoundation.org Don't let what you cannot do interfere with what you can do! Billy www.langfoundation.org ----- Original Message ----- From: David To: Billy Lang Sent: Wednesday, September 30, 2009 9:57 PM Subject: Re: [QUAD-L] Prialt Hi Bill, My name is David. I'm a 52 yr old quad who has suffered wit intense neuropathic pain that at times drives me nuts. I'm taking neurontin, darvacet, morphine, celebrex for my pain orally and it really isn't doing much to relieve the pain. The doctor has deceided to put a morphine pump in and I'm looking forward to it because the doctor aid he could control my pain better. I've already had the overnight test for pump so now it's up to me as to when I'll have it installed. Let me know how it goes and if you hae a pump installed tell me your out come. David David B. ------------------------------------------------------------------------------ From: Billy Lang <[email protected]> To: quad-list <[email protected]> Sent: Wednesday, September 30, 2009 11:35:56 AM Subject: [QUAD-L] Prialt Tomorrow, I am going to a test to see if Prialt delivered through a pump directly to my spine will alleviate my pain. http://www.prialt.com/ After 20 years in the chair I am suffering from herniated discs in my lumbar and arachnoidtis. I have yet to find a combination of opiates (oxycodone, OxyContin, patches, Lyrica, etc.). The drug has had some positive effects on MS patients. I am told that I will be the first quadriplegic to test the drug's effectiveness. I'll let you know how it turns out. Don't let what you cannot do interfere with what you can do! Billy www.langfoundation.org
