[Inspiretoday]

It has taken me months to get to this point. I have tried Nerve Blocks, Meds, weight loss, meditation, oils, energy healer and even a Shaman. I am exhausted. I have lost my life that I once knew living in the caribbean, and now I am back in Virginia living doctor appointment to dr. appt. My savings is gone and I am no longer able to live alone because I cannot take care of myself & my dogs. I am only 34 years old.
I have finally agreed to consider the SCS. I tried to read through some of the threads but just got confused. So here are my questions:
1) Can you generally chose your SCS or is your office represented by a company? If you can chose, which are the best?
2) Can you get pregnant & continue pregnancy with the SCS
3) Is it worth it?
4) What questions should I ask my Dr next week?

Please refrain from the super negative stories. I am working hard to stay positive and have found that this has greatly improved my pain. Thank you all

[Littlepaw]

Hello,

I am sorry to hear that you are suffering so much and finding little relief. It is challenging to deal with such loss and uncertainty. I am glad that you are working to stay positive. It does make a difference in our pain levels. I cannot answer the SCS questions although it is my understanding from studies that they work best the first while (2-3 years) then the body adapts and efficacy goes down.

Have you tried ketamine infusions? I am getting them now and feel that it is helping. It may also be worth looking at something like Calmare. It is controversial and subject to many opinions but is much less permanent a thing to consider.

Stay strong and keep up the fight.
Sending hugs,

[LIT LOVE]

I would encourage you to research HBOT as well.

[RSD ME]

hi inspired. i understand how hard it is to decide on an scs. i decided to maybe use it as a last resort if nothing else helped anymore. currently i'm on pain meds and antidepressants. i also have a home exercise program from pt. accupuncture and three surgeries caused me more pain and spread so my pm dr and pyschiatrist increased some of my meds. i am close to the max that i can take of all of them, so if they stop working and i am maxed out, i may consider a trial scs. if i were you i would research online about scs and talk to a knowledable pm and neurologist who know what rsd is and who are good at implanting scs. check their healthgrades online. they first do a trial scs for five days to see how you like it and if it helps you. maybe talk to them about that first about and see what they think. also check out the other ways of treating rsd like calmare and ketamine. i am not familiar with either of these or hbot for that matter. everyone reacts differently to different procedures so you have to make an informed decision with your drs and family and most importantly do whats right for you. i hope you find relief soon whatever you decide. soft hugs.

[Inspiretoday]

Originally Posted by Littlepaw

Hello,

I am sorry to hear that you are suffering so much and finding little relief. It is challenging to deal with such loss and uncertainty. I am glad that you are working to stay positive. It does make a difference in our pain levels. I cannot answer the SCS questions although it is my understanding from studies that they work best the first while (2-3 years) then the body adapts and efficacy goes down.

Have you tried ketamine infusions? I am getting them now and feel that it is helping. It may also be worth looking at something like Calmare. It is controversial and subject to many opinions but is much less permanent a thing to consider.

Stay strong and keep up the fight.
Sending hugs,

Hmm, what is Calmare? I searched it, but am not finding much information. how difficult is Ketamine for insurance to approve? I would much rather do Ketamine than having a device implanted. I also just found out that I would need a psych eval for the SCS. Really? That's frustrating. Just another hurdle to jump through. I am an LCSW (Licensed Clinical Social Worker) so the idea that I have to have a psych. eval is annoying (for lack of better words!).

Thanks for the help. We don't have a CRPS group in VA and have found no "specialists" in the area to really talk about things with. I feel that the PM clinics are like used car salesmen, pushing and selling these devices. I just want to sit down with someone who cares.

[Littlepaw]

Hi,

I can understand your reluctance on SCS. It is a big decision with all kinds of potential sequelae. I certainly encourage you to hang in there with med changes and looking at other alternatives first.

Getting my ketamine approved was no problem. I am not doing the traditional five day infusions of four hours each. My PM likes super low dose and feels it helps people with fewer side effects. I only go every two to three weeks right now which is maybe not frequent enough but with summer vacation and office closure for the 4th of July it's been tricky. Even with just that it is making a difference. My cost is $300 per infusion and they last an hour. I am out of pocket till I hit my sky high deductible. I have a thread on this called "getting Ketamine infusions" with a thumbs up sign. I posted an update on infusion three recently so if you scroll through threads a couple pages you should see it.

Calmare is hard to describe. It is also called Scrambler therapy. Mayo did a study on it and found it helpful for neuropathic pain though sample size was small as I recall. It is to be used when all healing is complete and there is nothing else injury or pain contributor wise to treat. It is non-invasive. They put sticky pads around the injury and send whatever signals through. It is not a TENS but looks a like a similar idea on steroids. It must be done in office (high dollar machine) and operator skill does seem to factor in. Some claim great results, some claim no results, a few say it feels worse during treatment and discontinue. We had a new poster recently I was PMing with and she went to Rhode Island for it with Dr. D'Amato. Had good results the first week but I have not heard from her after the second week. There is a NJ clinic but I think the doc is a chiropractor from what she told me after extensive research into getting it done. My inclination would be to go with a physician who has done a lot of it. The Calmarett website has list of docs.

I have found acupuncture to be helpful and I take PEAPure daily (palmitoylethanolamide). I also went to a therapist who specialized in chronic pain, illness, life change. She was certified in EMDR and hypnosis and we did quite a bit of that to bypass my conscious brain. It was a big help in decreasing stress and despair after my third operation in a year and gave me better coping skills for pain.

I have made tremendous progress since my last bout on crutches and scooter. Improvement IS possible! It took a lot of trial and error and basic pigheadedness over a year to accomplish. Feel free to PM if you have questions on the ketamine or post them on the ketamine thread. I go for infusion four tomorrow and will post an update when I have results to report.

Hang in there, I am Sending Healing Love,