Dear Accox4,

The words "Spinal Cord Stimulator" and "Desperate" should never be used in the same sentence. The combination of these words is what has led to thousands upon thousands of CRPS patients being permanently disabled. You mention that your young daughter does not usually limit her activities. There is a very real possibility that a SCS could lead to a lifetime of limited activity and CRPS spread.

Please explore more state of the art, non-invasive treatments for you child. tDCS has provided a life long solution for Chronic pain patients, particularly those with CRPS. It has been quite effective with intractable CRPS and is quite safe.

You can never go back if your daughter's CRPS is ignited to full body and the odds are with that happening. Please use every ounce of your advocacy skills to examine the risks. My suggestion is to make the physicians who install them and the companies who manufacture them last on you list, rather than first.

My prayers are with your family.

i agree 100% with ballerina. i am only 18, and got the SCS because i was so desperate. now i am even more desperate because i have a foreign object in my body that limits my activities more then my RSD does at times. Please Please think this through.

Thank you again everyone!
I am looking into the Lidocaine infusions for her & we have an appt with her doctor next Tuesday to discuss this. As far as I can tell now, he only offers Lidocaine fusions, not Ketamine. However, I figure this is a good place to start, especially since she is only 13. Thank you Lit Love for this suggestion!!! Praying it works for her!

Also your daughter may benefit from prescription lidocaine cream for temporary relief.

Ketamine infusions are typically much more effective than lidocaine infusions, but not without side effects and very costly over time. The down side of both is that boosters are needed.

If your physicians are limited in treatment options for CRPS maybe it is time for a second opinion. Please consider tDCS. It is completely non-invasive, is highly successful in treating many forms of chronic pain, including CRPS. There are only minor side effects that are not long lasting. tDCS treatments also require boosters but the cost is much cheaper. Many time the results are better than Ketamine infusions. Please mention this to your physician. If he does not know about the treatments please do your own independent research to educate yourself to add to your already excellent advocacy skills.

Dear Yellow,

Hope you are totally healed and back to your regular schedule and had a great Holiday! Please give us an update on how things are going with your Spinal Cord Stimulator.

Happy New Year!!!!!

Thank you and Happy New Year to you too! My SCS works very well to reduce my RSD pain, I don't know how I could get on without it now. The pain is still there, but usually about a 4 out of 10 when I have it on which is much lower. The issue I've been having though is for some reason I am having stimulation in my stomach which is very uncomfortable when it is only supposed to be in my legs. I've been trying to move the leads down on their own by bending but it's not working- I think they're already scarred in- so now on Thursday of next week I'm going in to have my doctor pull them down a little. I can't wait to have this done so I can have the stimulation out of my stomach and be able to use the device for my pain relief even more.

I guess I would caution, though, that when considering the SCS be prepared for the chance of revisions needing to be made. I knew that was a possibility going in so while I'm frustrated with the setback I accept it and it's worth it for the kind of relief it provides.

Thanks for sharing yellow. So sorry to learn of your setback. Best of luck with your upcoming SCS revision surgery and wishing you a very speedy recovery and improvement in the quality of life that you deserve!!!!!!!!!!!!

Spinal Cord Stimulator/CRPS Checklist
 

Several folks have sent me pm's regarding questions to ask physicians prior to making the decision to implant Spinal Cord Stimulators to treat Complex Regional Pain Syndrome Pain. I have since developed a checklist that I hope is a helpful tool and will promote critical thinking, in depth personal research and self advocacy.

1) What specialized training have you received regarding Spinal Cord Stimulators and Complex Regional Pain Syndrome?

2) What is the source of your training for implantation of the device being considered for me?

3) What research articles can you provide to me demonstrating the safety and long term effectiveness of Spinal Cord Stimulators for treatment of Complex Regional Pain Syndrome pain?

4) What research or written documentation generated by the manufacturer of the device being considered for me can you provide, documenting the safety and long term effectiveness of Spinal Cord Stimulator for Complex Regional Pain Syndrome?

5) What is the Spinal Cord Stimulator failure rate for Complex Regional Pain Syndrome patients for the device that would be implanted in my body?

6) What is the revision surgery rate for Complex Regional Pain Syndrome patients for the device that would be implanted in my body? What is the failure rate for those surgical revisions?

7) What are the odds that implantation of the Spinal Cord Stimulator will cause a spread of my Complex Regional Pain Syndrome or ignite neuropathic pain at the incision sites?

8) Does the manufacturer of the Spinal Cord Stimulator being considered for me recommend implantation for Complex Regional Pain Syndrome Patients? If yes may I review that documentation? If no, on what basis do you install Spinal Cord Stimulators in Patients with Complex regional Pain Syndrome?

9) May I review the physicians clinical manual produced by the manufacturer for the device that would be implanted in my body?

10) What is the average revenue generated to your practice by a standard, uncomplicated Spinal Cord implantation?

11) What percentage of your practice's revenue is generated by Spinal Cord Stimulator implantation and revision surgeries?

I have CRPS and I am a Spinal Cord Stimulator surviver. I say surviver because I unfortunately had a stimulator implanted before I knew of the dangers and risks of SCS with CRPS. Even more unfortunate my doctor suggested a second stimulator to control the spread to my wrist that occurred as a result of a revision surgery of the first SCS, which worked great for 20 months and then just stopped working.

I decided that one spread and one limb with dystonia as a result of a SCS was enough. My doc responded by telling me there was nothing more he could do for me.

I was very lucky to discover the posts on Neurotalk regarding tDCS. The SCS left me in a wheelchair. Although skeptical about tDCS, I read every clinical trial I could find, (unlike what I did with the SCS, that research was basically reading posts on forums of SCS "success stories" which consisted of a few people with CRPS who had not had their SCS for more than months or a few years, in addition to my doctor and the Boston Scientific rep who assured me that the procedure was effective and safe for CRPS patients.)

I have been using tDCS since the first week in January and I have regained full use of my hand and the alodynia in the wrist is gone. I am now on a walker and the dystonia on my foot as well as the spasms are greatly improved. My physical therapist believes we can now make some real progress. Also, the constant headaches and irritability have greatly lessened.

I am now of all narcotics!!!! The atrophy in my legs is improving.

I so much hope that other's who have found failure with every other treatment try tDCS-especially consider this treatment before ever risking greatly worsening your condition with a SCS.

I was telling a friend how my life would have been different if I had taken the Spinal Cord Stimulator checklist mentioned in the prior post to my doctor. She informed me that given my state of desperation I probably would have been too threatened to do that. Sadly, she is correct.

In truth the failure of the Spinal Cord Stimulator which caused the spread and put me in a wheelchair is not the issue. I was my own worst enemy and failed to advocate for myself. I Listened to what I wanted to hear. When the unit worked I decided that it was a God-given miracle.

Spinal Cord Stimulators for CRPS are not driven by divine intervention but rather driven by greed.

If you are considering a SCS and can't take the checklist to your doctor you, like me, do not really want to know the truth.

Please protect yourselves so you don't risk having my experience. Remember, short term relief (months to years) is the best you can hope for with CRPS/SCS. The procedure will do nothing to stop the progression of the disease and the chances are real good that you could end up like me and others who failed to ask the right questions.