Failed Trial for SCS for RSD

It's been awhile since I posted with updates (I've only posted a few questions, I'm more of a "read everyones post and learn from them and stay in the backgrounds"). A brief summery of my RSD diagnoses. I had my left knee scoped in feb.of 09 which is what has cased the RSD. My knee actually needs to be replaced but Dr. won't because of the RSD. He says that if he did the surgery the RSD could get much worse (I can't imagine that being possible). I've already had 5 spinal nerve block injections. Then I did the 6 day trial with the SCS a couple of months ago and they were not able to get the stimulation pinpointed to the right area of my knee and could not get any relief from the pain. The Dr. I've been seeing for the RSD left the practice and I meet with the Dr. that actually owns the practice. He was the one to pull the wires out of my back from the SCS. I really liked him. He gave me a cream for my knee which is some form of Katamine (I thin
that's how it's spelled). He told me to apply 2 time a day for 2 months. It's been about a month now and no relief again. He did say that when I go back to see him, he wants to talk to me about implanting a pain pump. I take Suboxone for pain relief for Fibromy. that is a God send for Fibromy. However, It does not do enough pain relief for RSD. When the new Dr. saw that's what I was taking he suggested that I go back to Narc., for pain. I've read so much here from other folks with RSD and I'm wondering if anyone has or know's of another option besides a pain pump? Sorry this is so long. I'm just at the point that I know with every fiber of my being that God only gives you what you can handle and I know soooooo many folks have it so much worse, and I'm so very greatfull for what I do have. Any advise would be appreciated.

Hi Lucky -

Reflex Sympathetic Dystrophy (RSD) is the old name for a condition now known as Complex Regional Pain Syndrome (CRPS). Nobody is quite sure of the mechanisms behind it, but is usually develops after either injury or nerve damage and causes excruciating neuropathic (nerve) pain. It also often causes swelling, changes in skin, hair and nail growth, changes in skin colour and temperature...and it's something you'd not wish on your worst enemy :( It usually affects the limbs but can also affect the face, body and even internal organs.

SCS stands for Spinal Cord Stimulator, which is a type of implanted pain relief device that involved implanting electrodes over certain parts of the spinal cord. When the electrodes are programmed and an electrical current passed through, it causes interference with nerve signalling and in this way can help to provide pain relief - usually for conditions affecting the back or limbs, but there are variations used for helping with conditions such as migraine as well.

Patsy - HI, and *hugs* I've had CRPS for 12 years now. Mine started following a minor injury and surgery on my right knee when I was 14, but it was never diagnosed and became a lot worse after a second injury and surgery when I was 20 (in 2005). In '08 it spread to my left leg, then arms, back. My arms settled somewhat until I had a PICC line placed in my right arm a few weeks ago and they hit a nerve - it's now back with a vengeance in my right hand, arm, shoulder and upper chest. I've also had flares involving my face.

As far as treatment goes, I think I've been there, done that. My current therapy involves physiotherapy, meds (Oxycontin plus endone IR for bt pain, Topamax and Mobic), SCS and intrathecal pump. I've just had my fourth low-dose ketamine infusion but although it's helped with the swelling and sensitivity in my arm, this time it was a disaster for me mentally, emotionally.

Anything you want to ask though, just ask *hugs* again.

Patsy - my pump is mostly for dystonia rather pain. My primary pump med is baclofen, which is a muscle relaxant, and mine also contains bupivacaine, which is a local anaesthetic. My experiences with it have been pretty positive - I was almost completely wheelchair-bound before we found the right maintenance dose, but the difference it's made for me has not been to pain levels so much as to freeing up some of the muscles in my lower legs and feet. this page is various photos of my CRPS, including where my pump is located. They don't usually stick out that much...I was recovering from a life-threatening episode of gastroparesis (also the result of my CRPS) when that was taken and I think only weighed a little over 30kg at the time!) I have to take additional medications as I said - Oxycodone as both ER and IR, Topamax (an epilepsy medication) and Mobic (an anti-inflammatory).

The ketamine infusion uses low doses of the anaesthetic drug ketamine - the same as the one in your cream - given intravenously over 5-10 days. The idea is that it blocks certain receptors and can help to relieve CRPS pain by 'resetting' the central nervous system. It's a rough ride...I've had four of them and none of them have been nice. This last one was a waking nightmare - like being in a black hole of panic and despair - but that said, it gives good pain relief for a lot of people.

Hi Patsy, I think you and I may have talked in the past about a pain pump I am not sure. I have a pain pump and do know that they are now using them for patients with RSD with success. You must have a psych evaluation and a trial with the pump before one can be implanted. I have a Medtronics pump and suggest that you go to their website to read inf about the pump. Medtronics has the best web site on pumps of anyone i know. Their website is Medtronics.com.

As Laura told you RSD can spread, I do not know why the dr said it doesn't. Perhaps he is limited in his knowledge of RSD and maybe you should consider another opinion in this matter. Not every dr knows about it or what treatment there is for it either.

Is there a particular reason you are not wanting a pain pump? If you really do not want one, I would not let a dr talk me into one. There are lots of different medications that can be used in a pump, sometimes people have combinations of medications in their pumps, I have 4 different ones.

I have much better quality life with a pump over oral pain medication and I am on less medication as well. The meds used in the pump are in a much stronger form, it is a concentrated form. Do I still have pain with a pump, you bet I do, I always will, however, CP patients will always have some pain even while on medications. I also have medication to take for BT.

You may want to do a search here at the forum on pain pumps as we have discussed them in length here. If you have some specific questions please feel free to ask, if I can answer some questions I would be glad to.

Take care.

Patsy,
I wanted to send well wishes on your SSDI court date, and hope everything goes good for
you on that. The pain pump might be a good option for you...Keep us posted on things, okay
will be looking towards your posts...well wishes

Patsy the pumps are used on people when they have failed all orals meds that are available, so yes, it could be considered as a last resort. In my case we did run out of oral medications and the pump was the next step. At first I had a little trouble wrapping my brain around the idea, but I look at where I am now and where I was then and there is no comparison. I had no life then, I do now. I am doing things again that I was unable to do before. There are no highs or lows with a pump, no waiting on a pill to kick in and no clock watching, I have done every injection out there, many times over and nothing helped except the pump.

The biggest hurdle with a pump is finding a dr that truly knows all about them and the medications used and the dosages, a dr can either make a pump a success or a failure.

Good luck on your hearing and let us know how it goes.

Oh no, there is no zombie feeling or loopy at all. I just don't feel any different at all. i drive my own car just as before and would not consider it if I felt I would be endangering anyone. After the pump, I really could not fathom going back and trying to rely on oral meds. I feel as normal with the pump as I did before ever starting narcotics. The pump is not like getting a pain shot thru an IV either. You are always started at the very lowest dose in meds in them and usually increases every two weeks until you get leveled out with decent pain relief.

Granted pumps are not for everyone, but for people that have ran out of options pretty much in every way they can be wonderful. Its just another tool in the toolbox to help battle CP.