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considering a ibp for crps

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Posted 7/3/2013 6:13 PM (GMT 0)
 I am new to this site and am looking for information regarding ibp surgery for total body crps.
Posted 7/3/2013 6:38 PM (GMT 0)
Hi there...Welcome to the boards...I also saw your other thread asking about Doctors in Michigan...You can easily google CRPS doctors in the city you are located or other cities around you.

Most Neurologists these days are trained in this and can offer help.

You may need to find an actual Board Certified PM Dr. who specializes in doing the pain pumps. We have a few members on here that have them implanted and they have said the Dr. makes all the difference!

Hopefully they will come along and give info based on their experiences...

Keep us posted...

 


Post Edited (Snowbunny21) : 7/3/2013 7:22:44 PM (GMT-6)

Posted 7/3/2013 8:06 PM (GMT 0)
Does IBP not stand for intrathecal baclofen pump? Not positive but I'm sure it's a term I've heard. I have little knowledge of it though.

Hope you get some help and good luck.

Jane
Posted 7/4/2013 6:21 PM (GMT 0)
Yes I agree the right dr makes all the difference, I am still searching after my last pm dr dumped me. I have talked to many doctors but not all can treat my condition. I really want an ibp pump but am wanting to talk with others who have one before i move forward. Thanks for the help.
Posted 7/4/2013 6:29 PM (GMT 0)
I just read an article based on a study, that showed there was no long term advantage to a pain pump for those with CRPS, then to those taking oral meds. Seemed to be some controversy on the subject. It was at a CRPS web site, I can see if I have the link if you are interested.

I am suspected of perhaps having CRPS, and in the early stages of getting the right doctor to do the right tests to see if can be diagnosed. What I have found in my own search, is that most neurologists are not trained for CRPS, only certain ones.

david
Posted 7/4/2013 7:16 PM (GMT 0)
EternalPain if you are talking about a pain pump with Baclofen in it, one of our mods named Laurahas one. I have a pump but mine has a cocktail of pain meds in it. Let me know about this and I will get in touch with Laura for you.......Susie
Posted 7/4/2013 9:49 PM (GMT 0)
I welcome any info. To clarify i am considering a pain pump systsem with the coctail of different meds. I am already having troubles with my internal organs due to large amounts of oral meds.
Posted 7/5/2013 12:50 AM (GMT 0)
I will be glad to answer any questions that I can. Also you may use the search feature here at the forum, type in pain pumps & you can read posts about the pumps.....Susie
Posted 7/5/2013 2:21 PM (GMT 0)
Hi eternal pain - so sorry that you are finding yourself in this position.

I'm in Australia and I always get the impression that our medical system works rather differently to the US (if indeed that is where you are), but I'll fill you in on my own experiences in just a sec. I have severe and generalised CRPS, part of my pain management is a baclofen/morphine pump. It's important to be aware that - like with the SCS - a pump may not be the be all and end all. I require such enormous doses of intrathecal baclofen to control my dystonia/spasms that I can only have a small amount of opiate in the pump. I still take on average 60mg of Oxycontin a day, plus Topamax, Mobic & Cymbalta, and might have three or four days in a week where I need breakthrough medication.

When I considered a pump... it just so happens that my PM is well experienced with pumps. He sent me to a neurosurgeon he works with for the pump to be implanted. I now see my PM every 5-6 weeks for a check and refill.

After midnight here - but if I can help with any questions please ask and I'll come back to them when I can :-)

Laura
Posted 7/5/2013 2:49 PM (GMT 0)
Thank you for the info, Yes I am in the US and I live in Michigan and a very small community at that. Most who know me or of my condition always say that I don't look sick to them, and just cannot grasp what I tell them when I try to explain to them what I go through each day. Some say it just can't to be as bad as I say it is and others don't want to be around me any more. I have an extremely hard time in public places where crowds are located and are very noisy. It seems to set off an attack of breakthrough pain and I have to leave and go home for more meds and to lay in bed for up to a day. I do know that the pump will not be the end all be all but I must get some more relief. I am having an issue with my internal organs due to large amounts of oral meds, I am in hopes that maybe with the pump I can lower the amount of oral meds I need to take on a daily basis. I have the most wonderful wife and family that is so supportive as well, but I just cannot get past the personal shame of not working and supporting my family as I had for twenty plus years. Some in my family like to joke with me about being retired at forty, but I am not laughing with them. I want so bad to have my old life back and return to work and all of my hobbies. I do know that some day the pain will be gone and cannot wait for that glorious day to come. Thanks for all of the info on this site.
Posted 7/5/2013 5:36 PM (GMT 0)
I don't put much in those reports David, because I have seen the same thing reported for people having these pumps for chronic pain,go figure..................Susie
Posted 7/5/2013 5:57 PM (GMT 0)
Here is a good link to an NIH website (specializing in Neurological Disorders), directly dealing with CRPS in how it's diagnosed and what the best treatments are and it included the Pain Pump as well as other modalities and medications:

http://www.ninds.nih.gov/disorders/reflex_sympathetic_dystrophy/detail_reflex_sympathetic_dystrophy.htm#237053282

Sorry for the long link and it stretching out the post and thread...I never know how to fix this if it's a longer web address...

Posted 7/7/2013 2:16 PM (GMT 0)
David, I'd like to read, if you don't mind sharing the link. It it an info site, or a discussion one? It's always interesting to see how opinions differ, especially on the surgical options, and even among doctors. They can be wonderful - but they also have risks that aren't really on the radar for other pain patients considering them because of the potential for the surgery to cause the crps to spread.
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