[CRPSbe]

Where I live, in Belgium, Europe, Spinal Cord Stimulators are only refunded for CRPS type 2 (Causalgia) and not at all for CRPS type 1 (RSD). I have no clue why. The company making the SCSs are recommending SCS as treatment for both types.

These things are very expensive!

How is the state of affairs in the US (or elsewhere) for SCSs? Does it depend on your insurance? On the type of CRPS you have? Does it depend on how far along the RSD is? What are the criteria?

I don't have a SCS. It scares me to have nerve blocks or operative procedures done. So far, I have stuck with my medication, but I am curious about other procedures.

How does it work in the US?
What are your experiences?

[lostmary]

Marleen,

I don't know about everywhere in the states, but I'm in Virginia, and I have had 2 of them implanted. The insurance companies differ on what they require before you get one, but almost all need psych exams, and a lot of paperwork from the drs saying that everything else has failed and this is the next move. I understand your fear of having something implanted into your body. It is kinda freaky to say the least. It does take some getting used to, but once you have it then you just kinda take it as part of yourself. Kinda like wearing glasses. Do they work? I don't know. A lot of people don't like them, but for others they are a godsend. I don't have mine now, nor do I think I will get another one. I am considering the morphine pain pump for the furture tho.

Hugs
Mary

[SBOWLING]

Originally Posted by CRPSbe

Where I live, in Belgium, Europe, Spinal Cord Stimulators are only refunded for CRPS type 2 (Causalgia) and not at all for CRPS type 1 (RSD). I have no clue why. The company making the SCSs are recommending SCS as treatment for both types.

These things are very expensive!

How is the state of affairs in the US (or elsewhere) for SCSs? Does it depend on your insurance? On the type of CRPS you have? Does it depend on how far along the RSD is? What are the criteria?

I don't have a SCS. It scares me to have nerve blocks or operative procedures done. So far, I have stuck with my medication, but I am curious about other procedures.

How does it work in the US?
What are your experiences?

Hello Marlene,

I had to have clearance from my physcologist and paperwork from my pain management doctor that all the blocks had failed. I had one put in for full body RSD. The leads went from c3 in my neck to the lumbar area of my spine. It was covering my arms legs and low back. It was impossible for the programmers to program. After two and half years I had it removed. It was very sensative to posture. When I turned my head it would, sometimes, shock me. When I sat down the stimulation would go so low it didn't help the pain.
I know everyone's experience is different it wasn't good for me.
I wish you the best of luck in your search for relief.

Take care,
Sherrie

[michelles]

it is funny how different states and drs are when i first saw my pm they looked at my foot and that was one of the first thing they offered to me. i too had to go to a physcologist and they told me after the exam that i was a good canditate for it but i just am not there yet from the research i have done i dont think it is right for me, i do know everyone is different. i was told that the scs helps alot of different things to failed back syndrom rsd type 1 and 2, neck pain migrains and even stomach disorders, if your are wanting the scs i would keep telling your dr that this is the right treament for you and if they wont do it then maybe search for a dr how will for you. good luck


ps.. reasearch medtronic and bring that info to your dr maybe that will help. medtronic is a good company and it does say that is helps rsd type 1

[dennyfan]

CRPSbe, I have CRPS Type II. I have an SCS. I like my SCS now. I wasnt really happy in the beggining but I got a new programmer & he has helped me. It doesnt take my pain away but it helps & it blocks some of it. I wouldnt want to be with out it now. I had to do a psych exam & my doctor had to fight my insurance some saying we have nothing else to treat me with at that point. But my insurance paid. The good thing about the SCS is there is a trial surgery so you can try it before its implanted. Mine is cervical (in my neck) & runs all he way to my bottom. I have to be very careful not to pull my leads. I have already had one revision surgery because my dog pulled me too hard. I mean hard though!!! It does change stimulation being in the neck its very positional. I have gotten used to it. Doesnt bother me. But everyone is different. As you can see frfom the other post. I will be honest with you. My RSD did spread because of the surgery. Its in my back & in my hip & bottom now. Its a chance I knew I was taking. I thought I was good because it didnt happen right away. I felt it in my hip but not in my back for a few monthes. I still think I would do it again. I needed it for my arms. If you have any more questions dont hesitate to ask. PM me if I dont see them here.
Hugs & good luck, Denny

[dealingwithtos]

Hi Marleen,

I agree with Denny and have similar stories. I have RSD in my arms. I got the SCS implanted in November of last year. It has taken away all of the sensitivity of my arm. I do still have some of the heaviness and a spasm once in awhile, but for the most part, I'm glad that I got the SCS. To put it in perspective, it takes away 80% of my pain.

I wasn't on any narcotics (except after the surgery) for about 3 months. Then I started to have pretty severe pain, sensitivity and burning in my back. I really do think iI now RSD in my back, but when I saw my pain specialist/surgeon in February, she said to give it 3 more months of healing. Well, the pain is so bad now I'm on 2 oxycodone at night. I have another appointment with her next week to see if there something structurally wrong or if it is the RSD.

So, I have to say, while it has spread to my back (or I think it has), the stimulator does work wonders.

I do also agree with the shocks. If I turn my neck, look down, etc, I get a singe - for lack of better words. If I had it turned up higher, I would get a shock. Because the leads are up at the base of my neck, it works better for me to have it set low. Let me give you an example: My stimulator goes from 0 to 10. It goes in .05 increments. So, mine is set to .35 - not 3.5 - .35 That's how low I have it. It takes away all of the sensitivity so I can wear shirts now without pain patches. But, I have been told that if you have it in your legs, higher stimulation is possible. I have a friend that has RSD in her leg and she has it set to 7

SCS's are a very personal decision. Oh, I forgot to tell you. In the US, you are required to have a trial of the stimulator (along with all of the other things that people have said on this thread) - which they implant for 4 or so days. You can then get an idea of what the stimulation feels like. When I had mine implanted, the cost was $52,000. I think the trial was $12,000.

I hope this helps.

[dennyfan]

Dealingwithtos, Compared to people with SCS who are not cervical. I have been told that I keep my SCS very low too. Up until the last programming I only had to recharge every couple weeks. But my new programmer guy gave me a program that runs two programs at once. One for my back & one for my neck & arms. It runs my battery down quicker & I have to charge now every 6-7 days. My setting for my back are high like 1.7-1.8 but for my arms its only 0.7-0.8. At nigbt I have a differnt program I use & i turn it down to 0.5. Thank you for sharing that because I dont feel like such a wimp now. I think having it cervical is a lot differnt than having it lower in your back or for your legs.
Hugs, Denny

Marlene, I hope we have helped you with some good information & not scared you.
Hugs, Denny

[CRPSbe]

I have to say, it's not the first time I have heard about the leads moving or shocking people. A Belgian pain support group I am with has a number of people with SCSs, with other conditions than RSD but they do complain about the same kinds of side-effects, mostly infections, the leads moving and to a lesser extent the shocks.

That's why I'm so hesitant.

It's the same thing here, you have had to have tried just about everything else before doctors will even consider it, but no matter what it still is NEVER refunded for type 1 CRPS, which I think is more than unfair to even make a distinction like that.

[daniella]

I was told for myself that since I have PN and RSD that if they put it for the PN under the reason I think it should be covered and for the RSD not sure. So that made me wonder if for RSD if it is not always covered. Not sure though and I am in the US. I too have seen a few PM docs and have had one right away say he wanted to do the SCS no back check so on. Then I had another who wanted to do more pre stuff. I agree it depends on who you see and probably the state you are in some cases. I have also heard about the leads,spreading but then I also have a friend who really is seeing huge benefits. It is hard to know what ones own body will respond like. Good luck and feel better

[dealingwithtos]

Hi Denny,

Thank you for your response. First off, you are absolutely not a wimp!

I also have 3 programs that are working all the time. I have 2 in my left arm and 1 in my right arm. Because of where the leads ended up, I do have chest wall stimulation too. So, that's kindof annoying sometimes.

For me, posture is huge. I mean huge. If I slump, I get a singe. Putting on socks and shoes is also a challenge when I've just charged - because I'm looking down and my spine isn't straight. I can go about 2 weeks before I need to charge. Probably because I'm down so low. When I'm in pain, I just slouch my back down and look down or to the left and I use that singe to take the pain away. So, you can use those to your advantage too... I absolutely feel that if it was in my legs, I would have different settings.

Can you tell me a little bit about your back? Do you have RSD in your back or do you have back problems? Was that a result of the SCS? Just wondering as I'm having those issues now.

Thank you.