New to this Board. Questions about SCS
 

Hi My name is Maureen. I'm 54 and live in Phila. Pa. I had failed back surgery in 2006 at HUP. I walked into the hospital and didn't walk out. I woke up and wasn't able to move my left leg. The doctor ran out fo the room and didn't say a word. I was screaming. They sent me to Moss rehab for a month and I had to learn how to take care of myself when I went home. I am able to use my leg and walk a little bit. I have suicidal nerve pain. They put rods, screws, bolts, nuts in my back. DON'T ever get this put into your back. I had surgery in 1980 laminectomy and it was a great sucess. 2006 I was in shock that it went so badly. 10 hr surgery. It turned into a nightmare. I didn't take this very well. I ended up not being able to go back to work. Now I'm on SSD. I have no life. My brother lives with me now and takes care of everything. I was so independent my whole life until this failed surgery. I take Lyrica, morphine 30 and 15, Hyrdomorphone, flexeril, Lexapro and Xanax.I went to Neuro Surgeon at Thomas Jefferson Hospital last week and he thought I should get this SCS implanted. I'm scared to DEATH. I just found out it is still a serious surgery. Then I was told it doesn't get rid of the pain in the lower back. Just the leg. This device is from ANS. Has anyone had this implant? Can you tell me what to expect? Did it work? Do you still have pain? Any infection? Does it take the pain away? How does the device feel? Is it hard to sit down? Can you feel the device sticking out? Are you off the meds? Please let me know. I appreciate any help. Thanks, MO

Maureen, as you can see by the other posts there is a wide opinion here. I would do LOTS of research both into the ANS SCS and your doc. Ask if you can talk with other patients (yes I know HIPPA) but some docs have some patient who will visit with patients who are researching the SCS. Also does not hurt to check out the infection rate of the facility where your surgery is to be held. Be prepared for a psyc eval and jumping through the hoops to get it approved. Good luck!
and yes I am a believer in the SCS and what they can do for you

...Pooh pretty much said it all ! :)

There's plenty of diverse testimony here.....

I'm very sorry about your pain and what it is doing to you mentally.
I 'know' what you mean by 'suicidal pain'.......
I fantasized about taking a 12-gauge to both my legs........even a pain scale of a 4 can seem like a 12 when it's chronic and constant.

Think "hopeful" ! THAT's the KEY.
The good thing about the SCS is that you can do the trial and see for yourself. Mine covers the burning neuropathy (nerve) pain in both legs, but I was surprised that it does also cover the lower back. All depends on the exact location of the leads......where to put the battery is a whole different discussion....but you definately want a well-credentialled, confident Doctor. I always complained about my doc being TOO 'cocky', but he definately knows what he is doing and he did a great job.

Don't let the depression get the better of you. I began to allow my mind to go there and was mentally preparing to 'check out' at the ripe young age of 44! 2 years later, I've got a whole new life to live.....my first grandkid on the way and LOTS to live for.

Just read what folks have shared here......that's the best way to hear it straight from the horses mouth. But yes, lots of homework.

Glad you've found NT, Maureen.... It's just a big bunch of caring people :grouphug:

Will be good getting to know you
Rae
:hug:

Hi Maureen ~ I can sure relate. I've had that suicidal leg pain for 24 YEARS. I'm so tired of it I could scream!!!

I had the SCS for 6 months, but found that all it did was irritate the leg even more. I had it reprogrammed many times, but it still didn't work well for me, and we ended up having to take it out, which by the way is worse than having it put in. :eek:

When you have your trial period, if they give you any restrictions I'm not sure I'd follow them too closely. They gave me so MANY restrictions that I didn't get a good pain assessment during the trial. Then when they implanted it, I went on about my business after the healing period, and good grief, I wasn't getting much pain relief at all! Of course I thought during the trial i was cause they wouldn't let me do anything. So during your trial, give it a good "go." Get up and around and do your normal stuff!

If it were me tho I think I'd ask them if I could have the morphine pump. I had the trial for that and ALL my pain was gone. It was great!!!

Best of luck and keep us posted. God bless. Peace, Lee

Jcompere CRPS/SCS implant! Mo, I hope the SCS will work for you. I just got back from my doctor after having the permanate SCS implanted 3 wks ago. I am starting to experience back pain along the leads and the implant site is very sore. I was told to message the back and implant site to keep everything from tightening up. He expressed how important it is to stretch the tissue out durning the healing process that will take aboput 90 days. I told him I was unhappy with where the implant was placed(I have the paddels @ c2-c3) the implant ended up on my waist line Where my clothing irritates it He agreeded with me and said he was following the Boston Scientific Rep's direction for where it should go. She was worried about my bra line!!! My result is not as good as the trial as yet. I hope the computer adjustment by Boston Scientific rep will put things right. It has been worth it for me. When I turn up 2 of my programs(the best ones) it causes my right shoulder to jerk. Has any one had problems like this?
"J"

Hello J !
 

Welcome to NT!
I posted a message on your profile page. I'm glad you've joined us here on the SCS forum! I'm sorry to hear of your wrist fracture......isn't it unfortuneately amazing how one split second can change us! I had a horse kick my left hand and it was broke in several places. Those 'pins' I had to wear were not fun!
So, did you have the lamenectomy? Getting the paddles is a bit more complex of an operation than the percutaneous lead insertion (which is what I had - dual leads)
Boy, I've never heard of 'massaging the implant site' ! :confused: yikes!
Maybe I'm misinterpreting, but that almost spells disaster as far as the leads moving or infection setting in from the aggrivation of the site being stressed.
But I'm sure your doc knows best :)
Don't let the 'bad experiences' here scare you off! There are actually quite a few very successful testimonies......you'll run across quite a diverse range of experiences that the folks have shared. And it sounds like you are happy with yours (for the most part) and yes, the recovery period can certainly be quite challenging ! I layed on ice for the first week for the incision site.
And as far as that 'jerking' in your shoulder, it should be a simple matter of getting 'tweaked' :) at your re-program session.
One of the most important part of your success in getting the right stimulation is good communication between you and the Rep and Dr.
Thank you for sharing your experience!
Others will gladly join in and give support. This is a wonderful caring place!

Rae
:hug:

Hi J! I have had my lead in for over a year and had the battery removed last week. My back had been killing me over the battery and I had had three surgerys to try to make it more comfy but it didn't help. So I opted to remove the battery and not the lead. I am having pain now over the lead but take muscle relaxers to help with it. When I had my battery hooked up and turned it on it made the muscles in my stomach and side jerk and spasm. Mine was implanted for my leg. I am now having to decide if I can live without the SCS and if so we will remove my lead. So I guess will see what happens. Good luck with yours. Angela

Interesting. I had a fusion in 2004, and everything felt fine, but my WBC count was always elevated. Then, they found 6 herniations in my neck, and my physiatrist started injecting Botox into my neck and shoulders. That's when all hell broke loose. That's when the RSD appeared, with a vengeance. 2 rheums. misdiagnosed. And it was an OT who whispered into my ear as well. Thank God for her, because otherwise, my treatment would have been delayed even further. And, by the way, I cannot get anything like the meds you have. My doctor is talking about LOWERING my med dose, and I'm barely moving. Perhaps I need to seek out another pain specialist.

I had my SCS implanted Dec 09 so I'm just about 6 months out. I have severe chronic pain in my left Sacroiliac, left hip/abdomen, and left leg. I had 2 major surgeries for cancer in 01 which led to my troubles today. I ended up with lymphedema and major scar tissue from a complete lymph node dissection..the uncontrolled pain after the surgeries caused me to have a severe limp..which lead to degenerative joint disease of the sacroiliac joint. I've tried EVERYTHING..way too many meds, including ketamine infusions and high dose dextromethorphan.....I have nerve blocks and radiofrequency ablations on a regular basis.

The SCS was my last ditch effort. I did a trial in 11/08 with 1 lead but chickened out at the last minute for the permanent implant because I have horses and wasn't going to be able to care for them. I did a 2nd trial in 11/09 with 2 leads which gave a better response than 1 lead so I went ahead with the implant in 12/09 even with the issue about caring for the horses.

I'm 6 months out now...I had surgical site pain for about 3-4 weeks that for the most part went away. I've had my scs reprogrammed twice and am going in for a 3rd reprogramming because the last one made things worse. Originally I'd hoped to get my leg pain covered but it doesn't even touch it...my back pain is about 60-70% better on most days (doesn't do squat for me when a weather front moves through)...the hip/abdomen pain is GONE (yay for 1 out of 3).

I'm going in for 2 more RFA's next month to cover leg pain and to get my SCS reprogrammed...I couldn't survive without RFAs and nerve blocks.

Would I do it again? Its a toss up.....but I will say this....even some relief is better than no relief! I haven't had any problems with my battery or leads **knock on wood** but I am only at 6 months..I'm keeping my fingers crossed.

As for the trial..they do give you restrictions..and while yes..you do want to try to do normal things..FOLLOW THE RULES...you seriously don't want a major infection or to have a spinal fluid leak because you did something you weren't supposed to do. Having said that..don't sit in a recliner the entire time either..that won't do you any good..just use your best judgement...don't twist and turn or run a marathon...and don't pick up anything heavy.

Regarding infection..I didn't have an infection but I was also on antibiotics for 10 days prior to surgery and 10 days after because 3 out 4 of my past surgeries I ended up with abscesses and I REFUSED to do this surgery without cephalexin on board.

My SCS is from Boston Scientific..so I can't really tell you about how the ANS one might feet...my SCS is set (unfortunately) right where my jeans rest which is annoying at first..but I'm used to it now...when I first had the implant...it drove me bonkers to feel the implant pushing against the back of a chair..but it only bothers me every now and these days. SCS are implanted just under the skin so you can feel them...but mine isn't protruding all over the place....of course..it does have quite a bit of cushion to rest on :D As for pain meds..I'm still taking the same meds that I was taking before the implant..just less often with the exception of when a weather front comes through. Hope this long post helps you!!


Best wishes for you in your quest for pain relief.

Thank you for this!
 

Very well put! Good insight!
Hows it goin with your horses? Just wondered. I have 5 horses and still battle within myself if I'm capable of caring for them like they deserve.
Some days better than others.
Today....not such a good one :(

Just wondered how you're doin with your horses.
Hope it's goin ok

God Bless
Rae