scs for crps=scared to death
 

Hello again all!
Havent been on for awhile. (its hell to type). I have CRPS in my left arm. Along with priecers in my left wrist.
My PM Dr. suggested a SCS in June last i saw him. Voiced my concerns, but said at this point with my pain level im willing to do about anything. The more i have read, and even more thought, Im scared out of my mind to have this done. I still work full time which each day is getting harder and harder for me.
Long story short. I called for my pain med refill last week, he let me run out for 5 days! After several calls to his office the nurse ( who is not very intelligent to begin with) said he would refill for 1 month but really wants me to get SCS. Told her i was very worried about it, gave me # for the rep of the SCS. Basically telling me if i dont have this done he is finished with me. Might i add he is retiring in a few months. Refilled ONLY for 9 days of meds.
Closest PM Dr is 4 hourse away! I am at a loss i dont know what to do. Any suggestions or thoughts? Anyone had success with SCS? Will my CRPS spread?:confused:

There's no way I would let them mess with my spine not to mention there's too many negatives out there....
That's my humble opinion...
Whatever you choose to do I hope you find relief...

My PM dr kept pushing the SCS the first few years I had rsd and I said no. I'm with Russell. The thought of anyone messing with my spine which has scoliosis scares the heck out of me.
My PM dr didn't stop giving me the pain meds I need for my rsd though. He gave me options. Either do the SCS or take pain meds. I chose the pain meds.
If I were you I would find another dr who doesn't try to push something on you and threaten to take your meds away if you don't. That is not right to me. My dr never did that to me. Maybe check drs on RSDSA and RSD Hope online to see if you can find a PM dr closer to you. Sometimes a neurologist or GP will help with meds until you find a new PM dr. I wish you luck and don't let anyone pressure you into doing something you do not want to do. And always get second opinions. Take care.

I am in agreement with all of the above. Never let a doctor bully you into something you are not comfortable with doing. My last PM doctor tried to "bully" me into a SCS. He told me that he had no more "tools in his toolbox" and this was my only option for pain relief. He also told me that if I did not have it done I would be in a wheel chair and crippled for the rest of my life (Yes...he actually said the word "crippled"...). First of all, I reminded him I wasn't in a wheelchair and second I found a new PM doctor.

I know there is a big debate on the SCS. It was worked well for some and caused devastating effects/spread of the disease for others. I have had prior back surgery (2 level fusion w/ 6 screws & 2 rods) and there is no way in hell I would let anyone perform "unnecessary" surgery on my back when there are other options out there for CRPS. I am allergic to pain meds(opioids/narcotics) and other meds used to treat CRPS (gabapentin, amitriptyline, Lyrica, and many others). Luckily, my new PM listened to me and we tried ketamine. It has been a life saver for me.

But, there are many, many other options available to you for pain management. If you find a good doctor who is knowledgeable about CRPS, he/she will go over all of your options and let YOU CHOOSE what you feel is best....it's YOUR body...YOUR LIFE....you are in charge!

In my personal opinion, your doctor holding back your pain medication in order to get you to agree to a SCS is almost a form of mistreatment/malpractice.....that's just not right. If it gets to the point where you are in so much pain and don't have meds, I would call your family doctor and explain the situation. Hopefully he/she will understand and prescribe what you need. If not, then I would either go to the ER of your local hospital or to an "Emergi-Care" facility.

Good luck! And you can call the RSDSA people, as well, who can give you information on doctors in your area.

I'm a scs patient and my best advice will be and is, if there anything else outer still, to try ,do it,scs is it for everyone and might come with so manny issues ,so please if your insurance covers other treatments ,do it and if that the last option you have go ahead . My first positioning on my left buttock was a nightmare and still suffering from it ,got a new surgery this year to repositioned on my abdomen and works as I expected last year but to get to this point I suffer a lots pain and still suffering and getting often flare still due to my buttock pain,practically and literally a pain on the butt .
Try something else before ,it works I won't lie but having several surgeries is real painful and tiring for real,try other options and if you decides to go for it ,let me know,I can provide you pics from my trial and also surgery so you can have and idea about the real deal,is real hard and in my case recovery took my job and peace of mind ,so please take time to do reached and get education as much as you can about rsd to understand 100% what are you dealing with.
Check www.rsds.org and also www.rsdhope.org and also check the last edition on rsds with late updates hope they help more ,gentle hugs and best wishes ,Jesika .:grouphug:

I agree with what everyone has said.

I don't have a SCS and have heard too much bad to be interested in getting one. Especially considering my RSD started from 3 surgeries on my arm. I have no intention of doing anymore surgeries or anything invasive unless it is a life or death choice.

I'm fortunate that my pain doc prefers non invasive treatment.

Jana - listen carefully to what these folks are saying. Bullying a patient into a treatment is unethical. S/he may be motivated by a financial interest in the SCS. RUN from this clown. Explain your situation to your primary care doc and get some pain meds for the short term . Then, get a doc who will manage your pain long term - if a pain management doc is too far away, maybe try a neurologist, or a physiatrist. Good luck . -Lottie