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Post by worriedwife on Dec 12, 2008 16:09:56 GMT -6
I recently took my husband to the Director of Research and Development for Pain Management at Mount Sinai Hospital in NY. He seemed fabulous. There was finally hope that the immense amount of neuropathic pain he suffers from daily can be relieved. He had been treated for over a year by a local, yet very well respected PM doctor, but that doctor felt he needed to be referred out to this specialist. With that being said, I am nervous about the drug options as society has trained me to be fearful of them. I would like to know if any one has taken what I consider heavy duty pain medications, administered by a pain management specialist, for neuropathic pain, and the success rate they have experienced. We have already tried Neurontin, Lyrica/Cymbalta, Lidoderm Patches, and Flector Patches. Currently, while we are in the process of doing additional testing for other issues, we are doing a trial of morphine pills. Not sure how that will play out. Has anyone tried that regimine before? Thanks for sharing.
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Post by reneemoss on Dec 13, 2008 14:21:07 GMT -6
I have also tried Neurontin, Lyrica/Cymbalta, Lidoderm Patches and Ultram, Vicodin, Celebrex, Aleve and other ass'td pain meds........none of which work to take the pain away - some days are better than others........Shots in my back (for Degenerative Osteo-Arthritis) helps for a few months only. This is different from the neuropathic pain. I presently take 1800 mg. Neurontin daily for the neuropathic pain - and do my best to stay away from the narcotic meds because they are affecting Renal Function (Creatine and BUN 'spiked') and I don't need Kidney Disease on top of everything else!
My next appt. (Jan.) with Pain Management Dr. I will ask about Radio Frequency and /or Acupuncture?
I appreciate the sharing of others experiences! Thanks! & Good Luck!
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Post by worriedwife on Dec 13, 2008 19:41:52 GMT -6
Has anyone tried this regime of Morphine pills as a form of pain management? His PM dr. stated that it is actually the safest form of narcotic pain medication, confirmed by our primary care physician, as it has virtually no effect on any major organ (kidney, liver, etc.) My husband has a very non-addictive personality, so I am not concerned about the addictiveness of it, just seems drastic. He says it doesn't take the pain away, but does numb it.
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Post by peilynne on Dec 14, 2008 8:07:13 GMT -6
Hi,
I have neuropathic pain, excruciating nerve pain throughout my upper back. I have tried to go off my meds, no way I could. I feel it if I miss a dose by a few hours. I started out on slow release morphine 15 mg in the morning as well as motrin and nortriptylene 10 mg. The pain was still unbearable at times. I can take a lot of pain, but i would break down in tears. I have 5 mg breakthroughs of morphine but I took them sparingly. Finally I have relief from my pain. I take a slow release morphine in the morn, 10 mg, a 75mg lyrica as well as a 10 mg nortriptylene. At noon and five 75mg lyrica as well as a 10 mg nortriptylene, and at night same thing, except 25 mg nortriptylene. My pain levels are really good throughout the day and I'm doing pretty heavy duty physio as well. If your husband is going to try morphine I would recommend the slow release with breakthroughs as an option. I'm not addicted to my morphine I've been told the people who have pain, like we do are far less likely to become addicted than people who don't. I wish you the best and I hope your husband finds the magic cocktail that allows him to have quality of life.
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Post by IdaB on Jan 15, 2009 16:31:02 GMT -6
Hi - I'm another SCT survivor 'lurking' on the caregiver forum :-) Wasn't planning to post but this message caught my attention because I was just talking about this with a friend. So my information is actually anecdotal and second hand, but a friend of mine with neck injuries has been taking morphine pills for quite a while and has found them to be very effective. She's actually allergic to lots of narcotics, so that's one reason she ended up on that regimine. She said it's tricky to get the dosage right such that she's not loopy, but that (for her), there is a 'sweet spot' where she is not in pain but is able to think clearly and accomplish all her tasks.
Please do let us know how it goes - information about what works or what doesn't is more valuable than gold around here.
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Post by worriedwife on Mar 15, 2009 11:32:38 GMT -6
Well, its been 4 months since my husband has been with this pain management dr. in NY. While I was initially very nervous, the course of treatment has been working beautifully with regard to pain. He obviously still has many issues, but he is finally managing the pain he has been suffering with for 2 years. Just an update to give those hope  |
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Post by chickiet on Mar 16, 2009 9:10:58 GMT -6
That's great news - management of pain is a huge issue! Thanks for the update - it is always good to hear encouraging news.
Chris
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Post by normanjud on Mar 29, 2009 7:19:43 GMT -6
my name is norm and i have two tumors on and in my spinal cord, i have mri's every 3 months and they are getting worse. but i am a sissy and afraid of the knife. for pain i take methadone 80mgs a day and the fentanyl patch. i also take neurontin did i spell it correct? this does control the pain better than all the other meds i have taken. I have tried percocett and morphine. what i take now works and i have my head about me. i only wish i had the courage to have these removed, 1 is at t5 and the other at c3. they tell me that i could be a cripple if something goes wrong and this scares me. i am only 53 and to young for this. i wish everyone well and a pain free life. any advice would be of great help in my decision . Thanks for reading me cry, good luck and god bless you. my email is normanjud@yahoo.com for any advise you have for me. thanks..
Norman Judkins
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Post by linda on Mar 31, 2009 12:25:33 GMT -6
Hi Norman,
I think you will find a wealth of information and unbelievable support here. I'm so sorry to hear of your pain.
If I can make a suggestion, go to the GENERAL FORUM and introduce yourself there. I think you'll get loads of advice.
From what I've read, and heard, the best thing is to find a neurosurgeon who has experience with Spinal Cord Tumors. The other thing I've heard a lot - is that in some cases, depending on your circumstances, the sooner the surgery, the better.
linda c.
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Post by chickiet on Apr 8, 2009 7:30:55 GMT -6
Hi Norm, You are not a sissy for not having surgery. Some of us have the surgery and others do not, but I can guarantee you that nobody here is thinking you're a sissy!! I have a personal question for you - - are you the guy who was on the conference call in January who said you're from northeastern Vermont and that you get your care at Dartmouth-Hitchcock? I think I remember that person saying his name was Norm. Anyway - if that's you, please reply or send me a personal message. I grew up in northeastern VT and my parents still live there (I now live in Virginia). So I guess I'm being nosy asking about that, but it's such a small world... If that's not you, then never mind on the personal questions...  I guess my questions/comments for you on your tumors would be - how large are they, are they growing much, how long since you've been diagnosed? If they are growing it might be better to have surgery sooner than later - you could still end up a cripple without the surgery. If they aren't growing much you probably have time to watch and wait. What does your neurosurgeon recommend?? Chris |
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