[newyorkmets]

Hi all,

I've posted on here previously and just wanted to seek your counsel once again. I am a teenager, of college age and have had the symptoms of CRPS for exactly 2 years now. I was diagnosed a couple months after during a hospitalization and have only started to get real procedures done as I FINALLY have a legitimate pain management team behind me. I had a nerve block more than a month ago, like originally posted about, and it worked in reducing the burning and shocking pain in my left leg by almost half for less than a week. This was as good as could be expected after such a delay in getting the first line of treatment other than medicine and went better than I thought. Thinking back, I couldn't believe how much relief I got even for that short amount of time and maybe shouldn't have been counting every minute and putting all that bad energy in my body haha. However, soon afterwards, my sensation started moving further up to my hip. I'm taking Lyrica, still sleeping late because of all this and not improving in pool therapy or walking wise. I can't step on my foot or stretch anymore without triggering the shaking of limbs.. My PM head has put forth the possibility of a spinal cord stimulator, one I imagine would take place in December, after not even wanting to bring it up earlier in summer out of fear of getting ahead of ourselves. We might try a few more injections but it feels like delaying the inevitable. What are y'all's feeling on this? I've been researching for a month and it doesn't seem like many of you on here like it along with a few patient videos and testimonials, especially for younger people like me. What negative effects, other than not working obviously, can the SCS have? Will it limit me anymore than I already am and what are some questions you want me to ask my doctor the next time I see him next week? There doesn't seem to be much left that I haven't tried other than ketamine infusion and low dose naltrexone - what else am I missing? Again, it's been two years with this disease and I can hear the clock practically ticking on chances at remission. I at least want to get my mobility back soon, and I know how much of an uphill battle that is with my only success coming in a brief stay at inpatient rehab, I'm trying to do without after bad experiences. I've seen incredible support for the youth on the forums recently and am hoping for similar luck with this thread! Thank you in advance for each of your contributions!

[BioBased]

My PM doctor loves the SCS, at least this is what I garnered from a Google search about him, so I was prepared that he would mention it as an option, which he did. I told him that Deepak Chopra said " no electric." He was a bit taken aback, but IMO it was for the best.

Pool therapy only worked for me once I took Low Dose Naltrexone. And the water had to be very warm.

Like you I could not put any weight on my foot and the problems advanced to my knee and hip. I still have pain in those areas, but at least now I am semi-mobile. I can put weight on my foot, but I suspect it will take me about a year plus to regain my full mobility and stamina.

[Littlepaw]

Hi NewYork,

I am sorry you didn't get more than a few days relief out of the blocks. It is such a disappointment when we try something and find it doesn't break the cycle. And yet, we must try and hope nonetheless.

SCS is a very individualized decision and I feel must be based on what you feel comfortable with and how a trial goes. I personally wouldn't get one but I scar everything down to a degree that really shocks my reconstructive surgeon.

There is a subforum on these if you haven't looked at it already.
http://neurotalk.psychcentral.com/forum118.html

The problems would be scarring, infection, committing to something that can effect getting MRI in the future, pain and recovery, need for future surgery etc. Then having your body potentially adapt to it so it doesn't work long term. That said, many people get pain relief from them and recent research has focused on implanting them earlier in the course of disease instead of later to better effect. I would recommend trawling around on Google Scholar for articles on CRPS and SCS.

Do loads of research before making a decision and please don't let yourself feel rushed by the looming end of December. You may feel it best to try ketamine and LDN first or to go ahead with a trial. Only you know what is best for you. There are many options out there and the different types have pros and cons as far as convenience, ease of use and size of implanted device. There is even a wireless one now inserted via needle which says it doesn't interfere with MRI. The technology is changing all the time. Be sure you know what is available to you.

No matter what you decide I hope you get relief soon. Please come tell us what happens.
Sending hugs and healing love,

[DejaVu]

Hi Newyork,

Has your PM team offered you ketamine infusion treatments?
I am not referring to the "ketamine coma."
Some will, while some are against this.

Dr. Kirkpatrick helps young people with CRPS/RSD.
He is in Florida. You might get some ideas from his site.

http://www.rsdhealthcare.org/about-us.html
The link entitled, "RSD/CRPS in Children" will take you to a 43 minute video where we meet some of his young patients and they talk about their experiences.

Personally, I have learned every incision creates major problems for me. I will avoid any further surgery unless my life depends upon it.

You are making a big decision. I hope we can help support you in discovering the best options for you.

Hope to hear more from you.


DejaVu

[newyorkmets]

Thank you BioBased, littlepaw and DejaVu BioBased, I am glad you are on your way to regaining back some mobility - there are few like you who make it a point to share everything and anything that has worked even the slightest, in your signature w. modalities etc. littlepaw, not many can personalize their discussions as well as you can and that makes us all feel so important and thankful to be talking to you. I think it's great you're able to do so much for in the way of reading/literature to be informed and it's something I have to get better at myself. Deja, my prayers are that you're feeling better in spite of your recent flare up and am glad to hear the good news with your doctors. Thank you for the link as well, I'll now have something to look at tonight! My appointment is soon and I mean very soon, so I'm asking for some more guidance and support. My concerns re: the SCS are the down/recovery time from incisions and other horrifying things I've heard about it. I'll definitely inquire about the changing technologies of neurostimulators and if I'll get one that's more up to date and less invasive. I hope not to startle my team with so many questions and that they know I'm trying to do what's best for me and not trying to stand them up or teach them anything because I am aware that they are the experts! Really, I just need some more options on the table and probably a set schedule of where it'll go from here...
for the rest plz feel free to chime in NYM

[newyorkmets]

Something I forgot to my doctor and it may just be a stupid question: how is a SCS different from a tens unit, which has never worked for me? It seems like it is intended to do a similar task :/

[Littlepaw]

I am certainly no expert but my first thought is that SCS is treating pain by sending signals at the specific nerve roots of the spine instead of the periphery. I don't know if a TENS not working is any indication about SCS relief.

Definitely something to bring up with your doc. There are no stupid questions about medical devices....

[EnglishDave]

Hi mets,

Here is a very informative site:

http://www.poweroveryourpain.com/docs/Support/FAQ.html

The SCS really is nothing like a TENS Unit according to them,. They also detail things like driving, air travel, anti- theft machines, MRIs…

Dave.

[NurseKris]

One of the best things you have going for you is your youth! To echo Littlepaw the only stupid question when it comes to your health is the one you don't ask. I have found a lot of good resources here from everyone. One thing that helps too is having people who have battled this for many years, their advice is priceless!

[Neurochic]

Originally Posted by newyorkmets

Thank you BioBased, littlepaw and DejaVu BioBased, I am glad you are on your way to regaining back some mobility - there are few like you who make it a point to share everything and anything that has worked even the slightest, in your signature w. modalities etc. littlepaw, not many can personalize their discussions as well as you can and that makes us all feel so important and thankful to be talking to you. I think it's great you're able to do so much for in the way of reading/literature to be informed and it's something I have to get better at myself. Deja, my prayers are that you're feeling better in spite of your recent flare up and am glad to hear the good news with your doctors. Thank you for the link as well, I'll now have something to look at tonight! My appointment is soon and I mean very soon, so I'm asking for some more guidance and support. My concerns re: the SCS are the down/recovery time from incisions and other horrifying things I've heard about it. I'll definitely inquire about the changing technologies of neurostimulators and if I'll get one that's more up to date and less invasive. I hope not to startle my team with so many questions and that they know I'm trying to do what's best for me and not trying to stand them up or teach them anything because I am aware that they are the experts! Really, I just need some more options on the table and probably a set schedule of where it'll go from here...
for the rest plz feel free to chime in NYM

You need to rapidly realise that the people who want to implant an SCS are doing it because they get paid a huge sum of money to do so. You are young, so you probably haven't realised yet that its naive to think that these people are either experts in your condition or are suggesting doing things because they are actually in your best interests.

I know you think that they are looking out for you and are experts but I promise you the chances of one or both of those things being true with CRPS are very slim indeed. You need to go and learn all you can, as rapidly as you can, so that you can make properly informed decisions. You should question everything and push your doctors very hard for evidence based, logical, and detailed answers. Chances are you won't get any, they will try to bluff or they will become irritated and blame you for not just doing as you are told - if that happens find a new doctor.

I have had CRPS for a long time and have dealt with countless doctors and other healthcare workers - the most important thing you can do to improve your chances is learn everything you can about this condition because if you don't know at least as much or more than the doctors, they can (and will) tell you any old garbage to either get you out of their office or to flog you the latest thing they are making money from. The evidence for SCS effectiveness in CRPS patients is very limited (very few studies with tiny numbers of participants and reliance on small studies in people with entirely different medical conditions like strokes and back pain) and the long term evidence is that they are largely ineffective (long term here is 2-3 years from implantation). There is no data available yet on which anyone can assess or make claims for the newer types of stimulator which even more impressive claims are being made for.

With the greatest respect to everyone here, the best place to get your knowledge is by working your way through the published medical journal articles, case studies and research papers. RSDSA.org has an online library of free to access papers that will give you a start but a lot of the more recent stuff isn't included there and has to be paid for if you want to read it. If you have access to a university library whee they have subscriptions to medical publications and databases, you may be able to geta anything at all for free.

Where there have been meta-studies, these are incredibly helpful in helping you understand which research is reliable and which isn't because they should always rate the quality, bias, content and methodology of each piece of research that is included or discarded. The globally acknowledged gold standard in meta-analysis is to look at Cochrane Library papers. This forum and similar sites have a place but they do give rise to all kinds of assumptions, misconceptions and urban myths - you need to get as much 'hard' information from scientific sources as you can. Its by no means perfect but it is the best resource you have access to when you are going to have to deal with doctors and take an active role in your own care.

You rapidly need to learn how to self-advocate in a robust and assertive way and challenge everything you are told albeit in a constructive and polite fashion from a base of good quality factual knowledge. I would recommend that you delay any SCS decision until you have researched the evidence from medical, scientific sources first.