Reflex Sympathetic Dystrophy (RSD and CRPS) Reflex Sympathetic Dystrophy (Complex Regional Pain Syndromes Type I) and Causalgia (Complex Regional Pain Syndromes Type II)(RSD and CRPS)


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Old 08-20-2007, 09:54 AM #11
DDayMBB DDayMBB is offline
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trial was wonderful... I have TOS as well as RSD and just got my permanent so waiting for them to get it up to theraputic range

Mark~n~Goober
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Old 08-20-2007, 06:44 PM #12
Attybg Attybg is offline
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Hi Tayla, Thanks for your offer to communicate with me about your experience with the pump. I see my PM Doctor this week, so I will ask him about what kind of pump and test he has in mind. I have the video from Medtronic and I'm going to watch it tonight or tomorrow night. Ill be in touch after I see my doctor. Would you be comfortable our communicating by e mail? If so, I will send you my e mail address.

Bruce
PS: What do you think about Vic's comments?
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Old 08-20-2007, 09:36 PM #13
tayla4me tayla4me is offline
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Hi Bruce,
Good luck with your PMP--You are more than welcome to ask whatever you like about the Intrathecal.
I have sent you a PM Bruce.
Regards Tayla
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Old 08-20-2007, 09:55 PM #14
coleen h coleen h is offline
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My pump saved my life and continues to do so. It gives good pain relief and reduces the side effects of the large doses of narcotics. Also, everyone (doctors nurses and pharmacists) breathes a little easier because the dose is so small - the annoying issue of addiction becomes a non-issue. that alone is worth a pump.

The problem of tolerance still there. It is not a miracle cure but overall the best treatment I have received for this horrible disease.

Pump implanted in 2003. I'm doing OK.

Coleen
RSD right arm from elbow surgery in 97
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Old 08-28-2007, 07:08 PM #15
Attybg Attybg is offline
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Tayla, my PM Dr hasn't given up yet. He believes that if I reduce my Kadian to 150mg a day (down from 200mg) and take Namenda, which is the drug prescribed for severe Alzheimers, I might get the relief I'm seeking. Interesting! He's not against the pump, in fact he thinks I'll get the relief I'm seeking, but he want's to do it as a last resort. So I guess I haven't exhausted all my options yet. Thanks for your imput.

Bruce
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Old 08-28-2007, 07:18 PM #16
Attybg Attybg is offline
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Thanks, Coleen, I'll keep you posted. My PM Dr believes he will find the right combination of drugs to give me the relief I'm seeking, so I have to be patient for a bit longer. But he is a great fan of the pump. Again, thanks for your imput.

Bruce
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Old 08-28-2007, 08:49 PM #17
daylilyfan daylilyfan is offline
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I only wanted to pop in and say that I started Namenda the end of May. I ramped up to 30mg a day. I noticed improvement at about a week during the ramp up.

I love Namenda. I have had a hard time with traditional pain meds, so it's like a Godsend to me.

I have been able to stop taking Topomax since I started the Namenda.

It has helped my pain, and REALLY helped the brain fog. Probably took my pain from a constant 6-7 that peaked at 8-9 to a 3-4 peaking at 6. I am pretty level now on pain except for the days when the barometric pressure is FALLING .... then, I am miserable!

Good luck to you....
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