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Spinal Cord Stimulator
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Mattk posted:
Hi All,

A bit about myself. I am 36 years old and have had four surgeries:
1: Microdisctomy (L4/L5)
2. Anterior/Posterior interbody fusion with instrumentation.
3. Revised posterior fusion (bone graft did not take with 1st one).
4. Laminectomy with Rhyzolosis.
5. Radiofrequency denervation of nerve roots.
6. Many facet blocks and various lumbar injections.

After all of the above, I am still in severe pain. My PM dr has suggested a trial of the SCS. I am booked in for the 16th Janaury 2013. I am very nervous but am willing to try anything to get my life back. I have three beautiful young children, but it's very frustrating that I can't do the things that I want to do with them as the pain is so bad/

I am keen to hear from anyone who has the procedure.
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David Maine, MD responded:
Thank you for your post. I would ask your doctor if he can connect you with any patients who have an implanted device. We routinely do that in our office (some patients agree to be advocates) and many find it very helpful. Good luck. Please let me know if you have any other questions I can help with.
 
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ctbeth responded:
I have a St Judes SCS, I've had it for a few years and I love it.I'd rather talk privately.

You can write my email.

Too tired to write at 139 AM

bethhuntington@live.com
 
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babyred1975 responded:
Hi Mattk , Im concidering a scs trail .its been 7.5 yrs since I was dx>d with crips or rsd ,tried many things to help ,down to scs and/or ketamine ( not an option to me ) ,used pm clinic for 5 yrs or so than spoke to my family doc to see if he would be comfortable working with me ,brought my med print outs for the previous 3 years so he could see what I had been taking ,doses, changes etc, I think because Im an RN at that time for 15 yrs he felt more comfortable in working with me ,its a godsend ,at clinic I felt like the doctors just wanted to do what they wanted w/o my input , dt my background once I had dx I did research ,somewhat discouraging ,but at least I had a starting place ,the SCS is next ,my fears are like most ,will I end up worse off ? all of my siblings are also RN*S, my mother was ,and my 2nd daughter is an RN, Im hoping for some relief my lt leg ,hip ,and lower back are involved, started with bilat knee replacements ,I bet my ortho Id be back to work in 8 weeks , he bet 12 weeks ,he had helped me get 3 more years before doind replacments ,I was happy and couldnt wait to end pain and be able to do so many fun things Id given up over those last few years ,and i knew my response time to get to emergencies would be better ,I was afraid if I waited much longer a patient could suffer , after surgery within 2 weeks something was wrong ,my rt leg progressed great ,my lt just wouldnt let me do the same ,to long after that to write ,my ortho great doc ,I think we both cried when the DX was made ,I was his 1st pt with RSD to leg ,he had 2 pts over the years both shoulder to hand ,,I had never heard of RSD in my years nursing , I was sure I could beat it ,Lol , an optimist by nature I couldnt accept my life was going to get flipped upside down ,it will be 8 yrs in feb , and I keep pushing myself ,I had my 1st spread of RSD in July 2012 .,freg falls dt my brain deciding my lt ft not mine anymore ! So being aware when I am walking to pick foot up is important ,forgot and took a really bad fall .,spread to rt hip,So please update after trail ? chicken babyred1975
 
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Sweetpete responded:
Hello, I have 2 SCS OF ST Jude1 in back for legs and feet and one cervical at 4-5 for arms and hands . Both for CRPS. Legs in 2008 arms in 2010. Johns Hopkins. 80% relief until just recently with both. Problems with implanted stim and battery in buttocks for legs . Eon mini now. Original battery for legs was older eon and was was replaced with smaller mini the same as the cervical battery in 2011 and both were fine until a year later the new mini eon for legs failed and was replaced. In October of 2012. Since then I have had horrible pain around the battery area and across my lower back and groin and down my legs. The system is failing! Surgeon says it is CRPS pain but I cannot live with this level of pain again! I had it under control . My pain doctor and and expert on the disease says the pain is MECHANICAL and is related to the location of the implant and the 5 year old excess wiring of the older system interfering with the new battery! He will speak with the St Jude people! BY ALL MEANS YOU SHOULD PROCEED WITH THE SCS IMPLANT IF YOU GET RELIEF FROM THE TRIAL. Do not be distressed if you do not get full relief or do not have full control. It is only a wire and it does slip and move. Play with the controls, don't just leave it on one setting. Peter Cooper. 443-994-9350. Any time. Annapolis MD
 
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Mattk responded:
Hi All, I have just completed my SCS Trial and am happy to advise that it was a complete success. I have decided to go ahead with the permanent implant. It gave me a significant amount of relief.
 
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Mattk replied to David Maine, MD's response:
Thanks David, I have just completed my SCS trial and am happy to advise that it was a complete success. It gave me a significant amount of relief. I have decided to go ahead with the permanent implant.
 
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babyred1975 replied to Mattk's response:
Mattk thank you for update , its been a bad few months for me ,Im having difficulty with se of these meds ,vomiting , nausea, if I close my eyes in shower I lose my balance ? Im not sure how this disorder is affecting my brain, but it seems to be having an impact on my ability to sense spacial areas , if I turn over to side in the night I vomit ,its quick and no time to get up ,so I have to make sure to have things nearby ,the pain in the cold is tuff ,but all my children are here and my 2 grandbabies ,only 2yr and 7 months ,so no moves to south , Im going to reconsider but must say one of replies is what scares me,please update when you can . thank you and congrats babyred
 
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babyred1975 replied to Sweetpete's response:
PeteI dont get on comp alot ,but I hope reading this that you have gotten new system ,I know calling someone in terrible pain is iffy ,many days I dont answer phone and let it go to voice mail ,esp in this cold weather , please update , I may call if we get a warm period . hoping its better for you . Im still on fence ,infection and poss further loss makes me very catious about and invasive procedures hope its better for you now I just hit 8 yrs and I still cant imagine this pain for the rest of my life ,doesnt make any sense and all Ive learned and loved has changed ,if will power could cure most of us Id bet 98 percent of us would be cured ! please update babyred


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