Recently Diagnosed
 

I recently was diagnosed with RSD after almost two years of swelling, burning and skin changes after a Fire extinguisher broke my foot. I have had two nerve blocks that have helped but i had a nasty reaction to the steroids and it has spread into my leg. They are talking about a Stimulator amd I havent had time to process major surgery let alone the disease itself. I feel so lost!

albrown,
Unfortunately, you are now a member of a GREAT group of people :grouphug:. RSD'ers! I am so sorry that you have been afflicted with this horrible, monster of a disease. I have had RSD/CRPS since '94. Mine is in my leg as well. This is a great forum for you to find not only information but support!!!

I have had and SCS with GREAT results. I, unfortunately, am prone to infections and had to have mine removed 2 weeks later. :(

What I would suggest to you is before you have anything done, is research your Dr.. This is your body, it is ok to ask him questions about the unit, how many times he has put one in and the neuro he will be working with!

Good luck and God Bless!
Gentle hugs

Thank you!
 

This is all so new to me and no one really prepared me for the emotional fallout. I rarely go out anymore, I am angry at the fact I can't do the things I onced loved, It just leaves your body and mind a complete mess! It is so good to know others out there who know what I am going through

Thanks so much for responding. I am really struggling with the emotional side of this. I was very active before this all started happening and its hard to find joy in life anymore when you are in constant pain

I'm very sorry to hear what you are going through. I would be very cautious and do a lot of research before seriously considering a SCS. I posted a reply to your question on the other thread about tDCS...I highly recommend considering this before something so invasive as a stimulator which does not have a good long term success rate (most fail within a few years in RSD patients) and can have some serious long term side effects and cause spread. Some people have had success with them...but it's not a decision to be made lightly when there are other options out there.

Many have also had success with ketamine, though it also has risks/side effects. But many have gone into remission with ketamine so that may be something to look into as well. But it is expensive.

With tDCS, I do it at home and the equipment cost only about $300. There are no side effects and it is very safe. It also targets the root cause of the condition vs. just trying to cover up the symptoms.

Everyone has to decide what is best for them when it comes to treatments and what risks they are willing to take. I just caution everyone to not make decisions out of desperation. Make sure you are 100% comfortable with any decision you make about treatment and the risks/benefits/chance of success of each.

For more information about tDCS, please read this thread:

http://neurotalk.psychcentral.com/thread160980.html

Sorry your here
 

I have CRPS in my left hand/arm for 3 1/2 yrs now. I have been through the nerve blocks, pulsed radio frequency ablation (made things worse), had a tens which did help, countless therapy-if you don't keep moving it it will freeze up. I did go through with the spinal chord implant. I had a trial first which will tell you if you are getting relief. I had the implant done a few wks after. At first I had about 70% relief and now it is 50% on a bad day and 70% on a good day. The spinal chord stim does help some of us, yes, some have had spread....everyone is differant. I just wouldn't knock it down quickly without talking to people that have had both relief and none, then make your own decision from there. Remember, they do a trial first. I waited a year before I finally told them to try it because I couldn't take what my life had become. Glad I did.

Hello
 

I'm sorry to hear this. I also have RSD bilaterally on my hands & wrist. Now its spread onto my right shoulder. I have a SCS and it has caused more problems than good. My leads on the right side of my neck have gone bad. I've had this machine for 6years and now it needs to be redone. Please think long and hard before doing this. My RSD spread to my incision sites and now I also have to deal with severe muscle & neck spasms.

Hi Albrown! Sorry to hear about what you are experiencing. You came to the right place for support and insight.

I have had RSD for 20 years, been through so many different, unsuccessful treatments. I had two spinal cord stimulators implanted last June, cervical and thoracic, and am very happy with my decision. They had to go back in and change out the leads in the thoracic stim for paddle leads in November which work much better. My SCS's have not caused any spread or additional problems, my spread happened before they were implanted. I have RSD in both hands, left arm, left leg and right side of my face. I am by no means pain-free, but my pain is reduced greatly and I regained use of my hands and arm.

Everyone is different in what treatment works for them. There are many RSD sufferers here that have had success with SCS. You just need to research all of your options, and your dr, so you can be comfortable with your difficult decision.

I would also recommend talking to someone, like a counselor or therapist, about what you are going through. You would be surprised at how much it can help. You are dealing with something that is life-changing and we can't all get through it alone.

I hope you find some relief soon.
Nanc
:hug:

It's so nice to have so many people who have been through this. My doctor is pretty much set on the stimulator and he's being very aggressive about it due to the spreading. He makes it feel like I have no other optikns

Tell me more about ketamine. I've been doing a lot of research and it sounds like a better alternative but I dont know how to go about it. Any suggestions

I would suggest a couple of things if you are interested in ketamine. First is to find a doctor in your area who offers this treatment and make an appointment to see them. Second, there is a Ketamine Klub on facebook that has a lot of members who have received this treatment and could probably help you out with any questions you have there. And third, I would start a seperate thread here on NT about ketamine and ask any questions you have. Everyone here is very helpful and they can share their experiences (both good and bad) and they are more likely to see your questions if you start a new thread about it. I'm sure if you do a search on here you will also find some good information.

I'm sorry I can't help out more as this treatment wasn't an option for me due to the cost and my fight with work comp to get treatment of any kind. But I think if you do those things you will be able to get all the information you need about the treatment. Many have had great success and have even gone into remission with ketamine treatments so it is a great option for a lot of people. Good luck!

It is a well documented scientific fact that Spinal Cord Stimulators do nothing to stop the spread or progression of CRPS. In fact, spinal Cord Stimulators can drastically increase the spread of CRPS. What pain relief you get for however long the stimulator works is only symptom relief. The progression of the disease continues.

If your doctor is pressuring you and providing you with no other options it can only be due to ignorance, more concern for practice revenues or both. You have many other options. It is up to you wether you allow a doctor to pressure you into a treatment or seek second, third, or more opinions to have other options available to you.

At the very least this gives you an opportunity to develop your own research skills.

None of us are CRPS smart when we start out. A good outcome is very much dependent on how good our self advocacy skills are, particularly in the face of an aggressive doctor.

albrown, you definitely do not want your dr pressuring you into ANY treatment without researching it and being comfortable with YOUR decision.

There are many of us SCS users on here who have experienced great success, including myself. If you are confident in your dr and this is the only option being offered to you, ask him/her why. Your dr might have his/her reasons for wanting this option for you. Just because a dr recommends this as your best option doesn't always mean that he is looking at you as a money making opportunity...not all drs are like that.

Everyone is different in what works for them and you really need to ask questions about all of your options before deciding on any treatment. The good thing about SCS is that you can have a trial to see if it may help you. Not everyone has successful trials, mine was great.

I made a list of realistic questions for my dr and he took the time to answer everything, until I was comfortable with my decision.

I wish you the best of luck and relief for your pain.
Nanc
:hug:

The stimulator seems to be the all rave these days. Be very careful about the SCS and since your doctor is sold on it lock stock and barrel be weary of him also. Some with RSD have relief, but all the reading I've done on the subject overtime it becomes a burden with those with RSD. It accentually masks the spread from the insertion of the device and overtime it catches up with you. Your doctor should know this because most with RSD do. Also, this device never was formally created or even researched to see that in fact this device should be recommended for a serious neurological condition especially one as painful as RSD. Keep looking into ketamine. Google is your friend. I'm sure many will chime in with places you can contact. I know that GW hospital in washington performs this but there are better ketamine treatment centers than GW. Check out both of these sites:
http://www.rsds.org/index2.html
http://www.rsdhealthcare.org/

Last year I went to an appointment for a consult on Ketamine. It took me years to get insurance approval for that appointment. He pushed the SCS saying my insurance would never pay for Ketamine. My primary contacted another doc locally and kept writing reports until I got insurance approval. I recently had my first Ketamine infusion and responded well. I'm now going to have a series of them. I've also been approved for the SCS, and continue to explore that course as well. It does scare me. But, those that have had bad experiences with it are more likely to still be posting. None of my current docs are pushing for it, and they concur Ketamine is the more conservative option. If I was guaranteed no spread, and promised 2-5 years relief, I'd be in the hospital today.

For the OP-you've had no relief, at all, from a block? That might indicate something other than RSD. Diabetic neuropothy as just one example. It also might be an unskilled doc performed the blocks. I've had blocks done by a perfectionist ex-neuro that were quite good, and others from a pain management doc that were hit or miss (excuse the pun...)

I'm so happy you responded well to the ketamine! Congrats on that success. I hope things continue to go well with the ketamine treatments.