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 05-03-2012, 11:43 AM #11
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Originally Posted by albrown3 View Post
Tell me more about ketamine. I've been doing a lot of research and it sounds like a better alternative but I dont know how to go about it. Any suggestions
I would suggest a couple of things if you are interested in ketamine. First is to find a doctor in your area who offers this treatment and make an appointment to see them. Second, there is a Ketamine Klub on facebook that has a lot of members who have received this treatment and could probably help you out with any questions you have there. And third, I would start a seperate thread here on NT about ketamine and ask any questions you have. Everyone here is very helpful and they can share their experiences (both good and bad) and they are more likely to see your questions if you start a new thread about it. I'm sure if you do a search on here you will also find some good information.

I'm sorry I can't help out more as this treatment wasn't an option for me due to the cost and my fight with work comp to get treatment of any kind. But I think if you do those things you will be able to get all the information you need about the treatment. Many have had great success and have even gone into remission with ketamine treatments so it is a great option for a lot of people. Good luck!
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Old 05-03-2012, 11:55 AM #12
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It's so nice to have so many people who have been through this. My doctor is pretty much set on the stimulator and he's being very aggressive about it due to the spreading. He makes it feel like I have no other optikns
It is a well documented scientific fact that Spinal Cord Stimulators do nothing to stop the spread or progression of CRPS. In fact, spinal Cord Stimulators can drastically increase the spread of CRPS. What pain relief you get for however long the stimulator works is only symptom relief. The progression of the disease continues.

If your doctor is pressuring you and providing you with no other options it can only be due to ignorance, more concern for practice revenues or both. You have many other options. It is up to you wether you allow a doctor to pressure you into a treatment or seek second, third, or more opinions to have other options available to you.

At the very least this gives you an opportunity to develop your own research skills.

None of us are CRPS smart when we start out. A good outcome is very much dependent on how good our self advocacy skills are, particularly in the face of an aggressive doctor.
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Old 05-03-2012, 12:11 PM #13
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albrown, you definitely do not want your dr pressuring you into ANY treatment without researching it and being comfortable with YOUR decision.

There are many of us SCS users on here who have experienced great success, including myself. If you are confident in your dr and this is the only option being offered to you, ask him/her why. Your dr might have his/her reasons for wanting this option for you. Just because a dr recommends this as your best option doesn't always mean that he is looking at you as a money making opportunity...not all drs are like that.

Everyone is different in what works for them and you really need to ask questions about all of your options before deciding on any treatment. The good thing about SCS is that you can have a trial to see if it may help you. Not everyone has successful trials, mine was great.

I made a list of realistic questions for my dr and he took the time to answer everything, until I was comfortable with my decision.

I wish you the best of luck and relief for your pain.
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Old 05-03-2012, 02:50 PM #14
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Originally Posted by albrown3 View Post
Tell me more about ketamine. I've been doing a lot of research and it sounds like a better alternative but I dont know how to go about it. Any suggestions
The stimulator seems to be the all rave these days. Be very careful about the SCS and since your doctor is sold on it lock stock and barrel be weary of him also. Some with RSD have relief, but all the reading I've done on the subject overtime it becomes a burden with those with RSD. It accentually masks the spread from the insertion of the device and overtime it catches up with you. Your doctor should know this because most with RSD do. Also, this device never was formally created or even researched to see that in fact this device should be recommended for a serious neurological condition especially one as painful as RSD. Keep looking into ketamine. Google is your friend. I'm sure many will chime in with places you can contact. I know that GW hospital in washington performs this but there are better ketamine treatment centers than GW. Check out both of these sites:
http://www.rsds.org/index2.html
http://www.rsdhealthcare.org/
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Old 05-03-2012, 03:36 PM #15
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The stimulator seems to be the all rave these days. Be very careful about the SCS and since your doctor is sold on it lock stock and barrel be weary of him also. Some with RSD have relief, but all the reading I've done on the subject overtime it becomes a burden with those with RSD. It accentually masks the spread from the insertion of the device and overtime it catches up with you. Your doctor should know this because most with RSD do. Also, this device never was formally created or even researched to see that in fact this device should be recommended for a serious neurological condition especially one as painful as RSD. Keep looking into ketamine. Google is your friend. I'm sure many will chime in with places you can contact. I know that GW hospital in washington performs this but there are better ketamine treatment centers than GW. Check out both of these sites:
http://www.rsds.org/index2.html
http://www.rsdhealthcare.org/
Last year I went to an appointment for a consult on Ketamine. It took me years to get insurance approval for that appointment. He pushed the SCS saying my insurance would never pay for Ketamine. My primary contacted another doc locally and kept writing reports until I got insurance approval. I recently had my first Ketamine infusion and responded well. I'm now going to have a series of them. I've also been approved for the SCS, and continue to explore that course as well. It does scare me. But, those that have had bad experiences with it are more likely to still be posting. None of my current docs are pushing for it, and they concur Ketamine is the more conservative option. If I was guaranteed no spread, and promised 2-5 years relief, I'd be in the hospital today.

For the OP-you've had no relief, at all, from a block? That might indicate something other than RSD. Diabetic neuropothy as just one example. It also might be an unskilled doc performed the blocks. I've had blocks done by a perfectionist ex-neuro that were quite good, and others from a pain management doc that were hit or miss (excuse the pun...)
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Old 05-03-2012, 03:42 PM #16
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Last year I went to an appointment for a consult on Ketamine. It took me years to get insurance approval for that appointment. He pushed the SCS saying my insurance would never pay for Ketamine. My primary contacted another doc locally and kept writing reports until I got insurance approval. I recently had my first Ketamine infusion and responded well. I'm now going to have a series of them. I've also been approved for the SCS, and continue to explore that course as well. It does scare me. But, those that have had bad experiences with it are more likely to still be posting. None of my current docs are pushing for it, and they concur Ketamine is the more conservative option. If I was guaranteed no spread, and promised 2-5 years relief, I'd be in the hospital today.

For the OP-you've had no relief, at all, from a block? That might indicate something other than RSD. Diabetic neuropothy as just one example. It also might be an unskilled doc performed the blocks. I've had blocks done by a perfectionist ex-neuro that were quite good, and others from a pain management doc that were hit or miss (excuse the pun...)
I'm so happy you responded well to the ketamine! Congrats on that success. I hope things continue to go well with the ketamine treatments.
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