Failed Trial for SCS for RSD

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patsy123
Regular Member


Date Joined Sep 2009
Total Posts : 41
   Posted 6/16/2011 4:19 PM (GMT -6)   
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.

luckyflowers
Regular Member


Date Joined May 2011
Total Posts : 164
   Posted 6/16/2011 9:38 PM (GMT -6)   
Patsy123,
I am sure I won't be able to help you since I don't know what your speaking of. Sorry about that. So what is RSD and SCS if you don't mind me asking?

Hang in there and I hope someone will come along to help with some advise.

Hugs
Dx: Herniated disk in my neck C6-C7, Degenerative disc disease and arthritis in my neck, sciatica, RLS, migraines and post-op RNY gastric by pass and depression.

Meds: Oxy, Nortriptyline, percocet, norco, xanax(as needed), sinement, topamax, imitrex, and paxil

Personal: Single mom 43yrs old to three children- two girls 5 and 13 and my son 16yrs old. I work fulltime.

CRPSpatient
Forum Moderator


Date Joined Mar 2011
Total Posts : 1276
   Posted 6/17/2011 4:29 AM (GMT -6)   
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.
CRPS since 1999, diagnosed in 2005 and since spread to full body, spasms, dystonia & contractures, gastroparesis, orthostatic hypotension,bradycardia/tachycardia, bone spurs, bursitis, carpal tunnel syndrome.

On Oxycontin/Endone, Topamax, Mobic, Magnesium, Florinef, Somac, Cipramil. Have a spinal cord stimulator, intrathecal pump with baclofen & bupivacaine and doing physio.

patsy123
Regular Member


Date Joined Sep 2009
Total Posts : 41
   Posted 6/17/2011 5:20 AM (GMT -6)   
CRPS, Thanks again for your response. I 'm glad you hit on the spreading aspect of RSD. I've been wondering if mine has spread to my upper thigh and calf because of the newer pain (4 months now) and did ask the new Dr. I first spoke on. I asked him about the newer pain and wanted to know if he thought my RSD had started to spread but he told me that RSD does not spread. After reading a lot of your older post, and looking up on the inernet on this, it does spread. Now I'm wondering if he is as good as I first thought. Can you tell me what your experience was with the pain pump and if when you have one whatever meds they put in the pump is that the only med for pain that you need. Also, what area would they implant the pump? Again thank you and I hope your treatment helps you. I'm going to look up what this Ketamine infusion is.
Luckyflower, thanks also for respondin:)

CRPSpatient
Forum Moderator


Date Joined Mar 2011
Total Posts : 1276
   Posted 6/17/2011 5:51 AM (GMT -6)   
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.
CRPS since 1999, diagnosed in 2005 and since spread to full body, spasms, dystonia & contractures, gastroparesis, orthostatic hypotension,bradycardia/tachycardia, bone spurs, bursitis, carpal tunnel syndrome.

On Oxycontin/Endone, Topamax, Mobic, Magnesium, Florinef, Somac, Cipramil. Have a spinal cord stimulator, intrathecal pump with baclofen & bupivacaine and doing physio.

patsy123
Regular Member


Date Joined Sep 2009
Total Posts : 41
   Posted 6/17/2011 6:48 AM (GMT -6)   
Oh Laura. Thank you from the bottom of my heart for sharing your story. I will never ever complain again. At my last knee Dr.'s appt., when he told me that he would not replace my knee even thou it has to be done because of how much worse it could make the RSD, I told him that I couldn't imagine it being worse, I now know it can. Your are the most inspiring and braves person I've ever knowen of. Thank you for giving me a new outlook on life and the change in perspective on how truly lucky I'am. God bless

straydog
Forum Moderator


Date Joined Feb 2003
Total Posts : 16285
   Posted 6/17/2011 11:37 AM (GMT -6)   
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.
Moderator Chronic Pain Forum

patsy123
Regular Member


Date Joined Sep 2009
Total Posts : 41
   Posted 6/17/2011 12:42 PM (GMT -6)   
Straydog, thank you so very much for your advise. I do also believe we have talked before. I have already gone thru the psyc., evaluation before I did the trial SCS. The SCS trial I did last month was also a Medtronic devise. The company rep. was in the operating room when they implanted the wires, also she saw me in the recovery room and I had to meet her the day after the implant as well as a week later when they removed the wires. She was so wonderful. She must have called me 3 times during the trial portion. The Pain Clinic I go to is suppose to be one of the best in my area (well that's what I thought till the Dr, made the comment that RSD does not spread). The Dr. want's me for some reason to use the Ketamine lotion for 1 month and then return to see how it (or if) it worked for me. Well, it's been 5 weeks and I do not see a difference. When I go to see him I'm planning to go ahead with the pump. On the clinics website they have a link to Medtronics site for SCS and pumps. I think the reason I was questioning it is that I'm afraid if this to does not help, isn't it kind of the last resort? I'm so grateful that Laura sent me a link with video's attached that have forever changed me. I will not let this get the better of me. I've been so worried about an upcoming hearing on Monday for SSDI that has been a long time coming and know that when this is over, hopefully the stress of it will help bring down some of the pain levels. Once again, thank you so much for taking the time to respond.

Chartreux
Veteran Member


Date Joined Aug 2006
Total Posts : 9664
   Posted 6/17/2011 8:48 PM (GMT -6)   
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
**********************************************
* So many dx's I could write a book* "It would be nice if we could use the edit button in real life"...
********>^..^<********>^..^<*******

patsy123
Regular Member


Date Joined Sep 2009
Total Posts : 41
   Posted 6/18/2011 4:25 AM (GMT -6)   
Chartreux, thank you so much for the well wishes. I'm so very very very glad that this whole court thing is almost over (one way or the other). It feels like my life has been put on hold for the last 2 1/2 years. I'm not sure how long it takes to find out the judges decision but will let you know. Again, thanks for posting.

straydog
Forum Moderator


Date Joined Feb 2003
Total Posts : 16285
   Posted 6/18/2011 8:25 AM (GMT -6)   
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.
Moderator Chronic Pain Forum

patsy123
Regular Member


Date Joined Sep 2009
Total Posts : 41
   Posted 6/18/2011 9:38 AM (GMT -6)   
Straydog, I'm so glad you brought up the failed most oral meds. I have a laundry list of the typical meds. they try. I'm not sure if it's just me but whenever I tried any new pain med that was "Extended Relief" I became a total zombie. The typical percacet, vicoden, etc., didn't make me as zombied out but then you get to the point where your tolerance makes you need more and more and I just don't want that anymore. I'm wondering thou you said that with the pump you don't have to go thru the up's and down's. Does that mean that you don't get any of the foggy, yuckey feelings you get when you take oral meds.? That alone would be wonderful! I didn't realize till now how much I miss the real me (me before CP) seems like a lifetime ago. Thanks so much for getting me excited that just maybe there is hope :)

straydog
Forum Moderator


Date Joined Feb 2003
Total Posts : 16285
   Posted Yesterday 1:22 AM (GMT -6)   
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.
Moderator Chronic Pain Forum
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