26 yr old battling CRPS, contemplating SCS????
 

Hello!

So I guess I'll get right to it. I'm a 26 year old female who has been battling CRPS for 2 years now. I'll start from the beginning... I had a tumor 3 years ago. When it was found (& not told to me until a good amount of time later) it was 2cm and when it was taken out 6 months later, it was 10cm. It was benign so in that respect, I am extremely lucky. It was a ganglioneuroma tumor and I guess those are normally asymtompatic and I was one of the unusual cases that felt pain, most likely when my stomach was full and so on. Well, I had that sucker taken out and afterwards I had the most horrible pain in my right leg (from the tip of my toes to my ribcage). I couldn't explain it and it felt like pins and needles, sharp, dull, joint pain, skin pain and everything all at once. I continued to see a pain management doctor that I started seeing the in the hospital when I had my surgery. He did roughly 20 nerve blocks on me in about 8 months. After awhile, it wasn't helping anymore. I had maybe 1-2 days of relief and then it went right back to pain city. In the meantime, I excelled at my job and got a promotion and kept working to try and mask the pain. My doctor had basically given up on anything else besides giving me a SCS. I have been taking 600mg Gabapentin for 2 years, by the way.

So I work on my feet for 40 hours a week for about a year without seeing any doctors and after a while, I couldn't mask or hide the pain anymore. I started seeing a pain management doctor that was referred to me by my OBGYN. He is incredible. After numerous tests and MRI's, he gives me round of steroid shots. The problem is, I have some seriously effed up nerves and they're all tangled in a ball and hard to see/get to and the modern medical equipment won't do it. Now I'm at the point where I've been on disability for 3 months and I still don't see land in sight. Half of me wants to hang up my hat and get the SCS and just HOOOOOOPPPPPE it works. At the same time, I want to try the more holistic approach like accupuncture but that's not covered by my insurance and who knows weather it will bring me any relief.

I am 26, I don't drink and haven't for over a year, I haven't taken pain pills in over a year, I am not overweight and I am 85% vegan with the occasional fish included in my diet, I get enough water, I don't drink soda and I do yoga on a regular basis. I just don't know what to do and I am feeling more broken than ever. I can't seem to get any good advice of information... so here I am.... asking for advice and information.

I know things could always be worse and I honestly think that is what is getting me through this but I would love to find something to get me out of pain and on the road to possibly being a mom someday.

Thanks in advance!!!

xo

Hello LittleKingdom,

I'm sorry for what you have gone through! Like you, I too ended up with CRPS II after surgery with a similar sounding saga of the tangled bundle of nerves causing originally only my right leg to be affected. I'm sure others will chime in with more info but here is my thoughts:

You mentioned above that you are taking Gabapentin but what about other medications, creams etc along with the Gaba and possibly even an increase in that? Mertazapine, Nortriptyline, Amitriptyline, Lidoderm patches, Specially formulated Compounded Cream and others. Have you discussed with your PM trying additional medications and perhaps even a low dose pain medication? In your shoes if I was managing as well as you have for the past year without pain meds but now find myself needing more to get through the day I would try a new combo of medications before going forward with the SCS to see if that gives you what you need. I personally have an SCS and although it does help, for me it just isn't enough. It would just seem a big leap to go from only gabapentin to the SCS without trying other meds first.

Since you mentioned wanting to try more holistic approaches you might consider reading a book "Holistic Pain Relief" by Dr. Heather Tick. I found many useful pieces of information in this book and have since incorporated much of it into my daily coping strategies.

Cheers,
Tessa

Iam 26 too, I got my rsd 10years ago from foot surgery and then had 2 more and it went full body. I was to the point my feet and hands were culed and my knee were frozen so couldn't walk, my bladder shut down and lost the ability to walk. I first tried the trial stimulator and with that meds and pt and ot I got walking in a month. I then got the permanent and it helped for 4 months then stopped but that was just me, I know for others it really helps all the time. I found out I had a neuroma in my nerves that was keeping them on fire which once that was removed I got walking again with meds and the ketamine.

Sam

Welcome LittleKingdom. :Wave-Hello:

I would recommend ketamine infusions over SCS any day. Ketamine has been a lifesaver for me.

Here's a blog entry by a PM doc in San Diego that was posted just this week cautioning against SCS!

http://painsandiego.com/2014/08/06/s...verse-effects/

I have pain in my hands otherwise I'd be writing more. But I recommend staying away from SCS.

Cut out gluten!!! Helped me.

And remember... THERE ARE NO SILVER BULLETS. Yet.

Also, once the SCS is in your body, it stays there. It's too risky to take them out. So, if you et one you have to be prepared to have a foreign object in your body forever.

You might try higher doses of gabapentin. Or combine it with a low dose of Lyrica in addition (what I do).

Welcome ,I also have scs for almost year and half now,works well but at the beginning had hard time,the setting is so important and all the medications combine. I really hope your dr finds the right combo to reduce your suffering ,we all,had travel this far and many scs didn't work as long or how we expected but trying is the way you really know.
In www.rsdsa.og you will find some extra informations ,might be helpful and also www.howtocopewithpain.org will also guide you to learn how to retrain your brain in focusing in something else beside pain.
I wish you soon get some much needed relief and let us know how things are going we all,hope always the best,we are a friendly community really caring about each other's,gentle hugs from Jesika .:grouphug:

Are you sure that an SCS cannot be removed once it is implanted?

It can be removed mine was, they wanted it out so I could have mri's a neurosurgeon took it out for me. For the surgery they used ketamine and Pain meds which helped keep me out of bad flares.

Hello,

You are smart for seeking answers, as this disease can totally devastate.

It sounds like you are managing well, considering you are on little medication and are able to stay active.

The spinal cord stimulator might be a smart thing to try if you are not wanting to try additional medication.

However, I don't want to scare you, but I am proof things can go very wrong with the surgery and you should be prepared for what could happen. In my case, there was lead migration, and infection, and my unit had to be removed. In addition, my crps has gotten much worse. It is now considered full body and intractable.

I'm 35, and have never drank either. I'm pescatarian or "picky" as my mom would say. :D

I have also heard of people who have wonderful things to say about the stimulator. So, I would be cautious as there are more risks involved with the stimulator versus trying a lidoderm patch, for example. Just keep in mind it is still an imperfect surgery.

I wish you the best of luck and hope you get the answers you are seeking,
Wendy

This is such a personal decision. My CRPS started when I was 25...it's been 5 years since then. I don't take any meds for the pain now...use things like TENS unit, tDCS, ultrasound heat therapy, hot baths with Epsom salts, etc to manage the pain. I work retail so I am on my feet all day and work 45-60 hours a week. I do need to use a walker...it helps with the pain relief, my balance, and gives me a place to sit whenever I need it.

For me...SCS is not an option I would consider. There is just too much risk involved. I experienced spread after a LSB and the pain went from just my left ankle through almost my whole body...my right leg and head are the only places spared (and it's not internal either). Invasive procedures...even mild ones like injections were then out for me (my decision...not the doctors).

I think you just need to make sure you understand all the risks and that you are prepared to accept the worst if it comes to that. For some...it is worth the risk. Some people experience great relief from the SCS...others get much worse. This is not a decision to be made out of desperation...it can have far too great an impact on your life for you to have any regrets about it later. I can't give a recommendation on what is best for you...we all have to make our own treatment decisions...just make sure you take the time to think it through and make a decision about what is best for YOU in the long run.

Take care and I hope you find some relief soon.

not a shot
 

SCS only work for 3 years and then you are back to square one. View http://m.youtube.com/#/watch?v=6_Nzh...feature=relmfu for updates on treatments, a clip provided by RSDSA.

Also read this and ask yourself how much you like to gamble.
http://painsandiego.com/2014/08/06/s...verse-effects/

Hello Little Kingdom and welcome! So sorry you are suffering. You have come to the right place, lots of good people here. I won't duplicate what others have said, they have all shared useful insights. For me personally, I chose not to get a SCS. You are doing good stuff to take care of yourself - clean eating, no alcohol, staying active via yoga and working. Great job! Is it your goal to stay off pain meds?? As others have mentioned, you do have options - you're on low dose gaba, if it helps you then consider asking your doc to double the dose to 1200 mg daily. I don't know the region of your pain, but lidoderm patches can be helfpul. Warm epsom salt baths, gentle physical therapy , swimming in warm water, meditation. Tramadol. In my humble opinion , a SCS would be way down on MY list of things to try.
Wishing you wellness,
Lottie

I also have a SCS and have had it for about 4 years now. I also do take 3 other medications to help with the pain. I have a couple comments.
1. Everyone is different. You could have a very good experience with a SCS. Someone just wrote that they are only good for 3 years and then you're back to square 1. No, not necessarily. That's just one experience. There are many out there and there are positive experiences too. Not just negative.
2. Explore all options. Try other meds in conjunction with the gabapentin. Lyrica, Cymbalta, orphenadrine, venlafaxine, the list goes on and on. Many different options out there with varying side affects.
3. Get a second opinion. Get a third opinion if needed.
4. There isn't a cure-all out there. It's finding what works for you but also to remember that nothing will take away all of the pain.

I've had a very good experience with a SCS. I also work full-time, corporate environment and am successful. I do know that I wouldn't be able to function without it.

Good luck on finding what works for you. Patience is hard but it's worth it to stay working and moving.