Hi all! My pain doc has recommended a spinal cord stimulator for me. My RSD has already spread to my right foot (in just 6 weeks since symptoms began). I have been undergoing nerve blocks which seem to have helped somewhat with the persistent swelling of my left ankle. The only symptoms I'm having in my right foot so far are the color changes (red/blue).

My question is this.....are the SCS for prevention of spread or just for the pain??? My pain is tolerable. When I'm not having the blocks, I usually can survive on 3 Advil to take care of it (I can't take Advil for 24 hours before or after the injections.....so I have to take Vicodin then). Occasionally, I need a Vicodin in the evening when my symptoms get worse anyway. The Advil doesn't completely get rid of the pain, but I can deal with it.

I have read up on the SCS on this forum and don't hear great results or outcomes of them. If anyone has any info on the USE of them, please let me know. I certainly do not want to go through that for pain I'm able to tolerate at this point.....it may get worse down the road when it will become necessary. I'll consider it then.

Also, I experience deep bone aches in my shins and knees and sometimes my left hip. It feels a bit like something is chewing away at the bones. Does anyone else experience this?

Thanks in advance for your replies. I have a nerve block this morning and may not feel well enough to check back until later. Plus, I've been up since 1am so am exhausted (something is making me not be able to sleep). These nerve blocks kick my butt.....am allergic to something in them......have a bunch of Benadryl put in my IV which makes me feel even worse (but makes the rash not itch so badly).

I wish everyone a pain managed day!!

I don't have an SCS but I do have several friends on this forum and others that might be able to help answer some of your questions.

Please do a LOT of research before getting the SCS - I have spoken to many people who it has made better and others that say that the SCS was the worst decision they ever made and it made there RSD spread. One of my friends had an SCS implated and her RSD went full-body within a matter of weeks. Everyone reacts differently though - if you are considering getting the SCS, I would suggest getting the trial first as that will probably tell you whether or not the implant will work.

We did look into the SCS for me however over here in the UK, they only implant an SCS as a last resort. My Doctor has never implated an SCS in a child before either as he say's it is too dangerous as your body is still growing at my age.

I also get the deep bone ache - I spoke to my doctor about it and he said it was from the RSD. When I first got it, I thought I had fractured my ankle but my doctor re-assured me that I hadn't and that it was a symptom of RSD. I was put on Baclofen as it is supposed to help with the aching pain as well as the muscle spasms but it didn't help in my case.

I wish you the best of luck and hope you get some relief soon!

The SCS cannot prevent spread and just masks the pain. Different people have different experiences with SCS, but I would certainly get more than one opinion. There is a lot of information available about spinal cord stimulators. Please do some research online to learn more. Proceed with extreme caution.

Best regards,

EJ

My title sums it up - the SCS at this stage sounds way too early for me! Like ALI12 said "they only implant an SCS as a last resort" and this is no exception here. I am not sure that your insurance company would even allow for a trial, which in itself is expensive, with the limited treatments conducted so far. My wife too had the trial of the SCS and the PNS (periphrial nerve stim) both of which failed to improve her pain. With your pain thus far being managed by little medication I would think you had lots of other options to try before this one.

In answer to your question, however, I believe that if you control the pain and other symptoms, you will most likely stop the spread. Thus if the SCS was successful I believe that the spread would stop. Though there may be some disagreement, the continued damage to the nervous system and the spread of symptoms has to do with the continued wind-up response of the sympathetic nervous sytem, and when this wind-up is stopped through the use of SCS, HBOT or any method, the spread is less likely. I think this would be a good question for the general group as to whom, if their pain is well controlled by ANY means, ever had continued spread of their symptoms?

As for the deep gnawingache, that is exactly th words my wife used to describe her pain since it started back in 1993. It has never changed her primary description.

Keep all of your other options in mind and definitely GO CONSERVATIVE when you can - surgery has it's own risks of causing flares and spread as well.I would remain very hopeful of all of the things you could still try before getting to the SCS point, should you choose to. Best o luck!

Hi MominPain

I would agree with the other posters that this is all proceeding too fast. An SCS will do nothing to prevent spread - it merely substitutes a different sensation in place of pain. If your pain is currently managable then there is no reason for anyone to be recommending an SCS at this stage.

It is an invasive surgery which carries the risk of CRPS occuring at the site of the incision. It has a long and very limiting recovery period where no bending stretching or twisting is allowed so that the SCS unit is properly covered with scar tissue. Then there is a high risk of complications - leads moving, infection etc.

Why would you want to go down this route when you are able to manage your pain with over the counter pain meds? Why would any responsible pain specialist suggest it when he/she is aware that you can manage your pain with over the counter meds? There are a raft of other prescription medications and other non-medical pain management techniques that you would work through before considering an SCS.

The deep aching pain is a feature of CRPS for many people. I have had deep aching pain from day one. You should make sure that your doc is satisfied that it is a feature of your CRPS and it is not being caused by something unrelated though.

Hi all,
Reed's SCS was implanted about 6 months after he was diagnosed and began treatment for RSD. It has helped tremendously with pain.. he can walk now with a limp, compared to walking only with crutches before. However, I will say MominPain, if you can manage your pain, you should really think long and hard about it. The restrictions with SCS don't necessarily end when your recovery period is over. There are life long restrictions, and to be honest, there are times when Reed has said he would almost rather deal with the pain and be able to bend and stretch again. His leads are floating, no paddles, so he can never again do things that can pull them and move them. It's alot to consider, and much research and thought should be put into it. Good luck!

I have been under trestment for 8 months. I have had 5 blocks and they have discussed SCS. After hearing I need a trial for 3 days , then if sucessful the implant surgery . That needs a surgery every 3 years for battery change out, and then 7 year swap. I am really confused, but the med'smake me sick and the blocks only work for about 5 days.????

I agree......I have no intention of letting them put a SCS in me. I guess my biggest question was whether it was a "preventative" measure as opposed to a "maintenance" measure. I've done a lot of research on the internet since posting this. I do NOT want it unless it becomes absolutely necessary. I have no idea why he mentioned it???

Basically NO ONE around where I live understands this disease or has even heard of it (or few have). I educate more nurses in the Pain Centers of the two hospitals here. Yesterday, I had the opportunity to educate an ER doc (and showed him my "trick" of being able to turn blue and purple and red by simply letting my feet dangle). I am so frustrated and depressed at this point.

Clearly, the injections are NOT working. I had a fever when I went for my injection yesterday. I had to tell them "No, this is a symptom of my SNS acting up......I am not sick".......my blood pressure is all over the map......they are trying random meds on me to see what will help.....I am not sleeping......my right arm is like a bruised pin cushion from all the IV's in it.......I am NOT happy about ANY of this. I wish they would just put me in a coma and wake me up when there is a cure. I'm tired of twitching all over.....I'm tired of the invisible man stabbing my ankle, the beast gnawing at my legs, and my foot stuck in invisible ice all the time.

Here I am trying to "deal" with the pain only with Advil and my Pain Doc scolded me yesterday for taking Vicodin before and after my injections (as they've instructed me NOT to take Advil 24 hours before or after) and telling me he wouldn't call me in more pain meds if I ran out early. I was lying on the table on my stomach.....they had already given me a sedative and I said, "But YOU haven't even called me any in......(I DECLINED their offer to call me meds in a few weeks back).....these are still left over from my surgery.......I still have a refill left......I take 2-3 Vicodin a day when I can't take Advil........I AM NOT A DRUG SEEKER". Screw him. I was up ****** off about it all night long.....why I couldn't sleep. Disclaimer: I am NOT judging ANY of you who NEED more pain meds than that. I really am able to manage it with Advil RIGHT NOW. I KNOW how painful this wretched disease is. Right after my surgery, when I was elevating/icing it, I was taking 8-10 Vicodin a day, easily. It has calmed down since then in me (and since I quit doing all icing and stuff) and the pain comes and goes (like contractions). If it was with me all the time, I wouldn't be able to manage it.

Sorry I am discouraged.....my poor hubby just got an earful of all of this over coffee.......I had nowhere else to go but the forum!! I hope I snap out of this soon. I feel like I'm heading for a serious depression.

I appreciate all your responses. I will NOT be getting a SCS......maybe some new doctors in a different town instead......take care all!!

Sorry you are having such a hard time of it. It is really amazing that more doctors and physical therapists don't know what RSD is. It just stinks - if the supposed "best" practictioners in RI had identified my problems sooner I wouldn't be where I am now. I bet that is true for many of us.

Maybe you could just take a nice hot bath tonight, sip your favorite adult beverage, chill with a good book or your favorite TV show, and go to bed early. Can your GP write you a script for some Ambien? I take that nightly to get some sleep, our limbic systems are a mess and it wreaks havoc on our ability to sleep.

Got to go, I sincerely hope you feel better soon, Sandy

Hi MominPain

You sound a bit furious!! If I can be so bold, if I were you, I'd honestly try and find a way to deal with the frustration of having to explain CRPS to every PT, OT and doctor you come accross. Sadly, this is normal and you will have to do a serious amount more of it before you are through. I know it is frustrating - I have been doing it for a year now and it is beyond tedious. However, that is the harsh reality of having this condition - nobody has heard of it, nobody knows anything about it and you get utterly fed up feeling that you are the only knowledgable and sane voice out there.

It used to make me really angry until I learned to accept that its just how it is. The anger was making me feel worse (and it was only me feeling worse - the nurses and docs just walk off oblivious since you are only one of umpteen patients they will see). It is a waste of your precious energy and resources to keep getting angry and frustrated about something that you can't influence. Once you give in to it a bit and grudgingly accept this as a fact, you will feel much better - I promise! I am not saying that its right but you need to invest your energy in yourself.

Try not to get too down about the blocks apparently giving you no demonstrable therapeutic effect. It is very easy (I know because I've been there) to build up all of your hopes for the next procedure or med or specialist visit. You hope that this will be the one that works, that you will be cured of this awful thing, that you will meet a doc who "cares" and can fix things for you. Eventually after weeks or months of this you realise that whilst it is important to be positive about all of these things, you can't build up all your hopes before each appointment just to have them dashed. Again. it uses up too much emotional energy and makes the pain and your mood worse. You need to find a way to go into all of these visits with an optimistic but realistic attitude to save yourself the rollercoaster effect.

One thing I would say too is that you may be better to have a more hard-hitting package of meds at least in the short term until you come to terms with the diagnosis and things settle a bit. I am not advocating taking medication for the sake of it but anti-convulsants, anti-depressants and strong opiods are used for treating neuropathic pain because they really can work!

You may find that something stronger will actually manage the pain for you better than your current regime. To a large extent if you can stop chronic pain from getting worse by blasting it with meds that work for you and by ensuring that your mood is OK then you have a better chance of preventing it all spiraling downwards and becoming worse. Like you, my pain has never been constant - it came and went every day and it has also changed in nature over the last 17 months. I have found a set of meds that work for me. Getting better relief from the pain helps improve your mood which helps the pain in an upwards and positive cycle. Don't wait until you are depressed and the pain is getting worse before you seek help - then you really will seem like a desperate drug seeker!!!

I don't know if I said before but there is evidence that alpha-blocking drugs can be effective for dealing with the colour and temperature changes in CRPS because they dilate the blood vessels. I was prescribed alfuzosin (brand name Xatral) which is licensed for treating benign prostate enlargement (in men obviously). It verged on amazing for me - the temperature increased and the colour changes became less dramatic. The vascular changes can become irreversible so it really is worth pushing to try a drug like this. In the short term it increased the swelling and my leg felt unbearably hot but that settled in a few days and I have had no other apparent side effects from it. Its worth looking into this aspect.

I know this is long but I hope that the info helps.