[albrown3]

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!

[renhenne]

albrown,
Unfortunately, you are now a member of a GREAT group of people . 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

[albrown3]

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

[albrown3]

Originally Posted by renhenne

albrown,
Unfortunately, you are now a member of a GREAT group of people . 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

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

[catra121]

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

[albrown3]

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

[catra121]

Originally Posted by albrown3

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!

[Jimking]

Originally Posted by albrown3

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

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/

[stressedout]

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.

Originally Posted by albrown3

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!

[Jessicav21]

Originally Posted by albrown3

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!

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.