Hello! I am new to this thread/group.. And I see all the post so I do hope someone out there can relate to my situation because I feel very alone in this daily fight!! This is a daily fight in everyway.. Everyday tasks are such a challenge!! I've had 3 back surgeries and one of them left me almost crippled.. I have been to more Drs then I can count.. I now have a very good neurosurgeon who is going to put in a spinal cord stimulator to try to help with some of the pain.. But he did say it will only help with some of the pain since my nerve damage is so bad.. I feel very alone in this because I can now barley cook dinner anymore.. My family is very understanding but they will never know what this type of daily pain is like to deal with everyday.. I find myself crying in the bathroom so I don't worry anyone.. But the pain effects every part of my life..I take Norco 5mg but that's it.. My primary dr who deals with the medication part of this I don't think truly understands the severity of RSD.. So he says to take 2 Norco a day.. I'm just at my wits end.. I remember how I use be before the RSD and it is like another person .. My mother who is 83 complains about her aches and pains but she gets around better then I do!! I would love to hear if anyone else feels alone in this.. I just recently went through a mastectomy w reconstruction and it wasn't as difficult as my RSD!! Best to everyone facing this battle!!

im newly diagnosed i do hear your pain n suffering. my mom just had knee replacement surgry and is better then me and my rsd is in right arm....i too cry in the shower

You are not alone. I'm very sorry to hear what you are going through. I agree that those who don't have RSD can't truly understand the pain we deal with day in and day out. It doesn't sound like your pain is being managed well at all. Norco didn't even touch my pain. I hope you get relief soon and that things start to turn around.

Isabella, don't Fret. And, come back!
We ALL have this crushing pain!
Which is impossible to escape, find a good neurologist, (this is phone tag), start with your learning/ teaching hospitals! In a city closest to you!
Find the Chief of Neurology, and ask what diagnostics does he have history in with RSD?
Don't Be Shy! This is YOUR LIFE~!


So, carry on, and let us know how it goes.
There's your first step.
IF the doctor doesn't believe the disease exists, there's little else you can do, besides find another...
I ' ve had this monster for 29 years. You MUST KEEP TRYING, Get up, and walk out, if the doctor is throwing some same old test at you!


Please; Keep in touch?

Pete


Asb

Hi.

You are not alone in this at all. There are people here that understand and can give you advice.

I would try to find a pain specialist that can get your pain under control. Many here are on neurontin, muscle relaxers and others. Think about getting another opinion.

I had a spinal cord stimulator implanted 2 years ago. It has totally changed the quality of my life. My RSD is in my arms. I lived with multiple pain patches on my arm because I couldn't have anything touch it. A fan hurt. The spinal cord stimulator took all of that way. It's right to think that it won't take all of the pain away - because it won't. I take no pain medication on a regular basis.

I just want you to know that you do have options. See if you can find a pain specialist that can give you other pain management options. See if you're a candidate for neurontin or see if you can add a muscle relaxer. I am on both of these - along with pain medication when I need it. Try something....

Don't give up. All of us are here for you.

Welcome Izzabella.

Here is a recent post of mine to provide you with some additional information to consider. Hope it is useful.


Quote:
Originally Posted by CRPSjames
Dear Kelly,
I am so sorry you are traveling the CRPS road. Since you don’t like things sugar coated and since one of the most risk filled procedure you can have when you have a CRPS diagnosis is a spinal cord stimulator I am sharing my truthful experience as well as links to other truthful experiences, of many like you who have had the devices implanted and been made far worse. Here is my first post on the forum from February of this year to provide you with my experience.

"I have recently joined the forum and hope to help others through my successes and failures with treatment for CRPS. I was diagnosed with CRPS in 2006 after run of the mill knee surgery, which began my CRPS trouble. After trying the usual treatments (blocks) and the more unusual treatments (HBOT) and the typical array of meds, my condition only worsened. My pain management doctor suggested a Boston Scientific Spinal Cord Stimulator. I was nervous but desperate for pain relief. I spent hours on the internet reading first hand descriptions of success stories. My trial was successful and although recovery from the actual implantation was grueling I was excited to get my life back. I had a good experience with the Boston Scientific rep, starting with my request to do my own programming, which hastened tweaking my stimulation. (I now know that self-programming has no relation to positive outcomes for SCS and CRPS patients. A patient receiving a spinal cord stimulator behind CRPS and self-programming is like a passenger being permitted to steer the Titanic behind the encounter with the iceberg.)

I was so sold on my experience that I became an outspoken advocate for SCS for other CRPS patients. Unfortunately, after about 20 months the stimulator just stopped working. A revision surgery caused a spread to my other leg and another revision resulted in a spread to my wrist shortly thereafter. When the doctor suggested implantation of another stimulator to address the wrist pain and try to get me out of the wheelchair that the failed SCS left me in I decided I’d had enough and it was time to do some real research.

I had the good fortune of being evaluated by a knowledgeable neurologist who I wish I had found prior to the SCS implantation. He explained what my own research had already uncovered.

Spinal Cord Stimulators (even the competitors of Boston Scientific like St. Jude) have long-term success with types of pain like Failed Back Syndrome. Relief for CRPS is at best limited to months or a few years. SCS for CRPS eventually increases and aggravates vasoconstriction and inflammation and further disrupts brain plasticity (the culprits of CRPS.) The eventual result of my spinal cord stimulator was rashes, sores, swelling and my alodynia was much worse than prior to implantation. Additionally, each revision surgery began a new area of CRPS pain as well as initiated the spread to my other leg and wrist. The neurologist explained this action to me in this way: The stimulator stimulated the pain fibers in my spinal canal, which spread the CRPS to other areas, like a freeway efficiently facilitates transporting vehicles to distant locations.

I told the neurologist that my pain management doctor said the spread had nothing to do with the SCS and that “CRPS spreads” and to prove his point he suggested I “ask the rep or call the company.” My neurologist found this laughable and stated, “Conversations like this demonstrate ignorance, greed or both.” Regarding the rep, I couldn’t have asked him questions if I wanted to because as soon as he found out I refused additional business for him he ignored me-yes totally acted like I was a stranger in the waiting room. When I approached him and asked to speak with him he claimed he was “busy” and would call me. Never happened.

My biggest regret is not that I failed to do my own research prior to implantation, or that I did not listen to my gut with the revisions, or even that I ignored the many warnings of other CRPS patients who had similar failures, or that I didn’t notice that the “success stories” were from people who had their stimulators for relatively short periods of time-months to a few years. My biggest regret is that I assertively encouraged other similarly desperate and naïve people with CRPS to have spinal cord stimulators implanted. Three of these people that I know of have had failures after initial good results, which, like me left them in much worse condition.

Since I can’t undo the damage I have caused others the only thing I can do is to share my experience and encourage others with CRPS to “just say no” to spinal cord stimulators, no matter how desperate you are for pain relief.

I was working when I was implanted. Now I am working my way out of a wheel chair and fighting spread, dystonia, skin infections, rashes, and alodynia that is far worse than prior to implantation.

My condition is now rapidly improving through the use of tDCS, which I learned about from this forum. How I wish I had tried this treatment prior to being debilitated by the spinal cord stimulator.

If you are considering a SCS the last place you should go to ask about risks is your pain management doctor (who stands to loose upwards of $40,000 if you decline, even more with revision surgeries), the company rep and testimonials of patients less than three years out from implantation.

I wonder where I would be today if the fork in the path had led me to tDCS rather than to a spinal cord stimulator?

It is better if I don’t really think about that too much but I hope others who still have a chance to protect themselves will."

Kelly, for additional information please carefully review the following links. You will find an excellent checklist to take to the physician who will be implanting the device. How I wish I had this tool and used it prior to being implanted with the device. There is also a list of CRPS patients who have had spinal cord stimulator failures, revision surgeries, spreads of CRPS and/ or explants of the device. After reviewing this information I suggest reading the tDCS thread on the RSD/CRPS forum. Think about why your physician has not suggested tDCS prior to a considering a spinal cord stimulator.

Please put the brakes on this procedure until you have done your homework. My only homework consisted of listening to the doctor who stood to make a hearty profit on the procedure, the company rep (need I say more) and the comments of a few on line people with CRPS who had the stimulators for relatively short periods of time. (less than three years) If I had looked more carefully at that group I would have seen that it was more of a “leap and pray” approach than anything rooted in reality. Prayer is great but if that is all you have to throw at the procedure you are asking for an experience like mine. Please feel free to send me a pm if I can provide you with more support.

st. jude stimulator.webloc


spinal cord stimulator f#399B3D


P.S. Please see Hooshmand's website for information on CRPS and Pregnancy. I am very concerned about any physician who would suggest a Spinal Cord Stimulator as a path toward pregnancy.
I received a pm that the links are not good. Try these:


http://neurotalk.psychcentral.com/thread161951.html

http://neurotalk.psychcentral.com/thread163281.html

"Thanks for this!" says:
ginnie (03-18-2012), Mark56 (03-18-2012)

my experience has been difficult at best. I had a spinal chord stimulator implanted in 2010..it doesn't take the pain away, it disguises the pain..however, it is supposed to stimulate both of my arms and only stimulates my left arm. After the implant, I have had unbelievable problems with my neck and killer headaches because, according to specialists, my occipital nerve was damaged during the implant. They can do a temp or a perm block of this nerve but it's painful, so I'm told, and it leaves you unable to feel your head..which,after the implant, I couldn't feel my head for roughly eight months..that in itself was miserable.Until today, every doctor I have seen has said that RSD does not get better, only worse..today's dr said it gets better. The meds I take are minimal because I'm too afraid of addiction and, they either knock me out or make me itch or throw up. The flareups are excruciating and the headaches are crippling. Workers comp seems to think I have no reason to be depressed and should be able to work every day..WHATEVER!! On most days I can manage to cope with the medical but add even one other life stressor and I'm doomed for at least two weeks. Stress aggravates everything as I'm sure you know. I can't tolerate heat or cold and have trouble judging temps of running water. I am super sensitive to light; can't stand to be touched; do not deal well with people, even those I know. This thing called RSD has turned my life upside down and inside out. I thought the spinal chord stim. was going to be the fixall at least to tolerable levels...boy was I wrong..my neck only recently started turning to the right, still barely turns to the left, I have severe balance issues, can't stand or walk very far/very long due to the pain in my neck and upper/mid back since the implant, dizzy spells, severe headaches, trouble sleeping,and so on. If you are considering the spinal chord stim. implant, they do a trial run first to see if you can tolerate the stimulation..they put you to sleep and insert the leads into your spine,wake you up and ask you questions,put you back under and tape everything down..my back was totally covered with tape and I had big wires taped also and was so afraid of getting them tangled up on something that while I tolerated the stimulation, the trial run was miserable so my dr took it out, which is done without sedation but was only a bit uncomfortable..the actual implant was pure torture but could be blamed on the dr because he was beyond horrible in so many ways..be sure to ask what they will give you for pain expecially, if like me, you are allergic to what they refer to as "the good stuff".He didn't give me any antibiotics and the incision which went from the bottom of my neck up high into my head(not lower neck/upper back as I had been told)became severely infected which meant a delay in removing the stitches...my hair was knotted like big, thick rope because they put my head in a halo..seriously, had to have a friend come comb it out for me..tons of conditioner/detangler and six hours of combing, she still had to cut off a big chunk that just refused to work loose.Guess what I'm saying is...if I had it to do over again, I would not opt for the implant..and you need to know also...once it's implanted, they will not take it out because it's too dangerous(or, that's what I've been told)and the generator they implant has gotten uncomfortable at times. For all those drs who think there is no such thing as RSD, come live with me and stick around during a flareup and then tell me if it isn't RSD, what the heck it is cuz it is horrific!

Hi Izzabella,

You are not alone !

RSD is a daily struggle. You need the help of doctors(s) who will work to try and help you minimize your pain and maximize your functioning.

If the Norco helps at all, perhaps a note from the neurosurgeon to your primary will help with a more reasonable order. I'm sorry, but if the pain is severe and constant, giving 2 Norco a day, which only last 4 to 6 hours each (it's exactly 3 hours and 45 minutes for me) is not effective pain management. I'm surprised the docs aren't also adding non narcotic meds that could help, like Neurontin/Lyrica or Cymbalta/Savella/other antidepressants.

Have you tried PT, chiropractic care, massage, accupuncture, TENS, tDCS, etc ?

First I would like to thank everyone for all the support and wonderful advice.. It's very comforting to know there are others who truly can relate to what and how I feel.. But I do not wish this on anyone.. Heres a little back ground to my situation.. I've been goin through this for over 3 yrs now.. And I have tried many other meds.. And tens unit., PT.. Pretty much everything but the stimulator I have tried.. I saw my neurosurgeon the other day and he said that with increasing Norco is the only option left.. And there is no way of knowing how I will be in 10yrs from now.. Even in the last yr it has gotten worse.. I try to be positive but it is very hard when so much of what I use to do has now changed.. I don't even feel like a woman any more.. I can no longer have sex with my husband because the pain is so intense., the dr said that is due to the nerve that is damaged runs through the pelvic area.. I am nervous about having the stimulator put in because this all happened to me due to a mistake a dr made during one of my surgeries.. But Ive tried everything.. I was also told stress makes this worse., has anyone else heard this?? I find when life does get especially stressful I am in more pain.. Basically bedridden then.. Anyone else find this?? My very best to everyone..

I would try ketamine infusions before I did something as permanent as an scs. We are currently in San Diego at www.painsandiego.com working with Dr Sajben on my daughters pain. She works with a variety of meds to deactivate your glial cells. So far my daughter has had 70% relief with hopes of further relief as the meds continue to work.