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Reflex Sympathetic Dystrophy (RSD) (CRPS) Message Board
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Old 10-06-2008, 01:26 PM   #1
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Robinjs03 HB User
Info about CRPS and Lumbar Sympathetic Block

Hello! I was just wondering if anyone has had experience with Lumbar Sympathetic Blocks and CRPS/RSD. I'm new to the condition, and would love any information about the possible success that the blocks might provide. I'm dealing with ongoing, crippling nerve pain in both of my feet after two failed surgeries for tarsal tunnel syndrome. My pain has only gotten worse and my feet started turning weird colors after my first surgery. My doctors (I've been to so many and have yet to find relieft) now think I may have CRPS/RSD since they can't figure out what is causing my pain and my feet turn red/purple/blue and get very cold also. I'm on lots of Neurontin (2400 mg/day) and Tylenol with Codeine, and now the Lumbar Sympathetic Block has been recommended. I can't stand or walk much at all due to my pain, and had to leave my job. It's been incredibly frustrating (I'm 27 and am supposed to get married in December, however I don't know how I will get through a wedding at this point) Any personal experiences or knowledge would be greatly appreciated. Thanks so much!

 
Old 10-06-2008, 04:24 PM   #2
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sharon1030 HB User
Smile Re: Info about CRPS and Lumbar Sympathetic Block

Hi!

Welcome to the board. Since your affected area is your lower extremity, you are talking about lumbar sympathetic blocks (as opposed to stellate ganglion blocks which are done for upper extremity). Mine were done YEARS ago as I've had this for 22 years and they did them in the beginning so I'm going on pure memory here (not much of that either ) so...from what I read, it is common these days that they give you anesthesia so you don't remember what happened during the block. Not every doc does it this way, but it seems to be common. They stick the needle in and inject a numbing med like marcaine/lidocaine. If they get the right spot AND you have sympathetically maintained pain, your foot will get warm and red. If they measure the temp in your foot, that should go up also. It is possible to have RSD which is sympathetically independent. In this case, a block wouldn't help.

It sounds like you've been caught early so that gives you better odds to go into remission than if you hadn't been caught early. You have that in your favor .

I hope this helps in some small way. If you have any specific questions, ask away. There are many great people here who are more than willing to share their experiences. As I said, my experience with blocks happened a long time ago so I'm not of as much help as someone who's been through it more recently. Good luck.

Also, congratulations on your upcoming wedding!
Sharon

 
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Old 10-06-2008, 11:26 PM   #3
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RoseinSanDiego HB User
Re: Info about CRPS and Lumbar Sympathetic Block

Hello,
Welcome to this Board. I was diagnosed in September of 07 and I have found people on this board to be very helpful and very kind. I was on 3600 mg of Neurontin, along with 60 mg of Cymbalta but the neurontin wasn't helping me much so the doc switched me to Lyrica. Right now I take 650 of Lyrica, and 120 of Cymbalta and I'm struggling to keep my 3 hour a day job at a Middle School, maintain our home and 2 kids. One is deaf/special needs and she requires quite a bit of help so I'm trying hard. I haven't had any blocks and I'm pretty scared to get them since it's the spinal area. My doctor is saying RSD and it's in both my feet but it was first to make its home in my left foot after a surgery with a bad outcome (I'm left with a scar right on the bottom of my foot where all the weight goes so it's horrible. I had a ruptured plantar plate that needed repaired and it's my belief system that the doctor hadn't ever done that type of surgery before. I should have gone to an orthopedic surgeon but my primary doctor referred me to a podiatrist so that's who did my surgery). A neurologist also did some testing that found neuropathy in both my legs but that's kinda on the back burner cuz it's the RSD that's most painful. Right now, I have Vicodin and take it at night. I'm in San Diego County and I've got an RSD specialist that I've been seeing since diagnosed by UCLA, after having a 3-phase bone scan, continued pain after surgery that got worse instead of better.
I'm so sorry to hear that you're hurting so badly. RSD is sooo very weird because everyone reacts differently to the meds, to the blocks, and to everything else. What works for 1 might not work for another.
Your wedding will be beautiful, no matter what. Hang onto that thought. You're in love, you're young and a man loves you. Are you able to get some support through him in regards to your RSD/CRPS? Having someone to lean on is important with this disease that we've got.
I wish you less pain in the coming weeks, and continue to let us know how you're doing. Everybody here cares.
Deb

 
Old 10-07-2008, 05:26 AM   #4
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Robinjs03 HB User
Re: Info about CRPS and Lumbar Sympathetic Block

Thanks so much to both of you for your kind words and support! It's encouraging to hear that you are able to live with this pain, I have had a hard time thinking about dealing with this for the long term and living like this. I feel like every doctor I go to I get my hopes up that maybe it will be the answer and I never get anywhere. It's quite the emotional roller coaster combined with and also related to all of my physical pain. My fiance has been really supportive though, I just feel so bad that he has to deal with me as we both were under the assumption that the surgery would have fixed the problem when we got engaged, rather than made it worse. I'm supposed to have the injection on Thursday, but am going to see the pain management doctor today to confirm it. I really appreciate all of the information, and wish you both the best in dealing with your pain as well!

 
Old 10-07-2008, 05:46 PM   #5
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sharon1030 HB User
Smile Re: Info about CRPS and Lumbar Sympathetic Block

Hi,

I totally get what you're saying about the emotional rollercoaster. I did that to myself for years. I had been told that I wouldn't have RSD for longer than 10 years (where that number came from, I don't know) so I continued with nursing school thinking that I would be better in the near future until I had to stop because I couldn't walk without crutches and couldn't do my clinicals on crutches. Anyway, I also would go to the doc's thinking that they would help me and as you said, I would be disappointed every time. Since I've changed my outlook on this, things have gotten much better for me. I don't go there with any expectations anymore. Just wanted to let you know I (and I'm sure, many others) can relate.

Sharon

 
Old 10-08-2008, 10:59 AM   #6
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Robinjs03 HB User
Re: Info about CRPS and Lumbar Sympathetic Block

Yes, I think now that I am finally being treated for CRPS and have an actual diagnosis it will be easier to accept the reality of my future and not continue to hope that I'm going to be cured every time I go to a new doctor. I had to leave my job a year ago too since I was an Exercise Physiologist. I got a sedentary job, and had to leave that too since the only way I can get through the day and manage my pain is by lying down with my feet elevated. But I kept thinking that eventually I would get better and could go back to my old job. At least now I know that I will need to try to figure something else out. It's so nice to hear that others can relate, I really appreciate hearing your story! Thank you

 
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