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Posted 4/10/2008 5:57 PM (GMT 0)
tongue  I think I might have some good news for a change.  I just got a call from my pm doctor telling me that I have been approved for a Spinal Cord Stimulator on a trial basis.  I will explain what I know about this procedure.  A micro chip transmitter is placed in my back and floats around in my spinal fluid.  I will have a remote control that is programmed to push on wherever I am feeling pain.  I will feel a tingling sensation instead of pain.  The basis behind this is to block the pain transmitters before they reach the brain.  The trial basis is to see if my body will accept the micro chip and if it is successful in relieving my pain.  If everything goes smoothly then I will have surgery for semi-permanently placement in my back.  I know this is much more complicated but it's the best my little brain can understand at this time.

 

I know it sounds kinda risky and a little too good to be true but I am up for anything that will help me at least walk to the bathroom on my own.  My neighbor had the same surgery last year and is doing miraculously better. 

 

My date for hopefully a new beginning is April 24th.  Sounds like forever and I know I still have many painful days before me but at least I have hope now.  Please keep me in your prayers.

 

If anyone out there has ever had this procedure or knows anything about it, I would love to hear your input. :-)

 

Posted 4/10/2008 6:47 PM (GMT 0)
I'm sorry you had such a bad response. This is what I need to hear - good as well as bad experiences. Did the procedure for placement in the trial hurt much? I guess that is a stupid question, as much as I hurt now I don't think I will even feel it going in.
Posted 4/10/2008 9:18 PM (GMT 0)
Oh, you are just the nicest person! Your knowledge & compassion are much appreciated.

When I go in for trial SCS it will be outpatient, actually in the clinic under local anesthesia. I will have it in place for a week. If it works (fingers crossed) I will be scheduled for the more permanent one in the operating room. My neighbor came home that evening. I don't think she had to but she has plenty of family support at home.

As for being bipolar, I am pretty much on an even keel with my meds. But with this cp my depression is at an all time low. I'm sure if I can get a grip on the pain issue my depression won't be as overwhelming either.

Thanks for your words of encouragement.
Posted 4/13/2008 8:57 PM (GMT 0)
I got a SCS back in August of 02 and it has been the best thing I have ever done.  I just love it. The surgery is not a big deal - for the trial or the permanent one.  You may have to stay in the hospital over night, but if you have had back surgery - this one is a piece of cake.  It really helped (and still does) w/my back/leg pain. I still have to take pain meds, but having the SCS enables me to be able to work and have a somewhat normal life. It's not going to get rid of all the pain, but hopefully it will make what pain you have more manageable.

 

I did have one of the leads go bad a couple of years ago, but they were able to fix it. The 4 months I didn't have it working made me realize again how much it helps me. I just can't rave about it enough!

 

I have had it for 6 years now and haven't had to get the battery changed. When they fixed it in 06 my battery was just under 1/2 full.  Just remember if you keep it, no MRIs or diatheramy - I got a medical ID bracelet just in case I got into an accident or something and was passed out, so the medical personnel would see that I have the scs and wouldn't give me an MRI.

 

So, I wish you great luck and let me know if you have any questions!!  tongue

Shannon

Posted 4/14/2008 2:11 AM (GMT 0)
Texas Aggie, Thank you so much to hear some good news about the SCC. The other post about the Neurotransmitter I heard virtually no good news. I was beginning to doubt my decision and with all there negativity I was begomming more anxious. But my neighbor had the implant, she was a different person. She does practically anything she wants to do. That was the only success story I had heard of. She has lost 15 pounds and her face doesn't have all the pain wrinkles. I want those results she has had!! I am going to follow strict instructions and have high hopes of success.

Did it hurt much for the trial implant? How long was it before they put in the semi-permanent implant?

I just thank you for good news about the SCS. Please keep me in your payers as I will for you too.
Posted 4/14/2008 5:47 PM (GMT 0)
Gramps-

I'm sorry for you negative experience, but the topic of "neurotransmittors" is really the one I was telling her about. Out of several negative experiences, I think only one was positive. I like to hear both sides but man, that site was very depressing for me. I don't plan to go back there. Right now I need all the support I can get.

Yes the 24th is soon upcoming. I hope all goes well.

Hope you had a good weekend!
Posted 4/14/2008 8:19 PM (GMT 0)
Lassie-
Remember that the people who have had successes with procedures, surgeries, etc., aren't likely to be posting. Hopefully, they're out living their lives! So you will get a disproportionate number of people who've had problems or no success. The only thing that matters is how the trial affects you. The good thing is the advice of Gramps and others can maybe help you to assess that in a bigger context.

We'll be rooting for you!
Posted 4/14/2008 9:01 PM (GMT 0)
Thanks. If my surgery goes as well as I think it will I will still be posting - I will want to tell EVERYBODY!!!

Thanks for the rooting section!!!!
Posted 4/14/2008 10:22 PM (GMT 0)
I have heard nothing but praises on the SCS implants. Even the people who reported having complications with the implant have said they wouldn't give it up for anything because it does help with their pain. You can learn more about SCS implants at controlyourpain. com. There are three brands that I know of, Boston Scientific, Medtronics, and St. Judes?. A good support group for people who are thinking about getting an implant or for someone who already has one is raceagainstpain. com. Good luck and best wishes!
Posted 4/14/2008 11:12 PM (GMT 0)
Hi,

I have a pain pump and while I don't seem to be having any problems with it and I've only had it a year I am still in the process of weening of my orals and patches. Ideally I'd like to get off all my meds except the pump and have that at least improve my quality of life. If not this  I'mwondering about the SCS it actually soumds like a better option than the pump. Keep us posted and let us know if and how this works for you. I'm out.

                                                   Toritoo

Posted 4/14/2008 11:53 PM (GMT 0)
Thanks so much cookie121. It makes me feel so much better to hear success stories. I will be getting the St. Judes implant and can hardly wait. The people on the SCS site have been nothing but supportive.

Welcome to the HW forum, I'm sure you sill like the good, compassionate people here.
Posted 4/15/2008 12:01 AM (GMT 0)
Toritoo - I sure will keep you posted on all I know & experience with the SCS. Like I have said before, my neighbor is doing fantastic with hers. She was also offered the Pain Pump but opted for the SCS, if that helps any. She has weened of her pain meds slowly and now only has a 25mcg Fentanyl Patch and 1 Hydrocone pill a day. Good luck in making your decision.
Posted 4/15/2008 1:03 AM (GMT 0)
Hi - I am so glad other people posted after I did!  The trial didn't hurt much at all. They put you to sleep, from what I remember, put in the leads but keep the battery on the outside. I remember feeling relief, not too much pain. I had it with me for 5 days or so. The only bad thing is that you can't really shower during the trial. :) I think I actually went to my hair salon and had them wash my hair on day 3 or 4.  tongue

 

It took a while for my insurance company to ok the permanent SCS, 2 months maybe.  That is the worst part about it - insurance is slow to approve because it is really expensive. But if the trial works for you, they should approve it.  

 

Let me know if you have any more questions!! And I am keeping my fingers crossed that it works for you!!! yeah

 

Shannon

Posted 4/15/2008 11:24 AM (GMT 0)
Shannon-

Thanks for any positive words. From what my neighbor said, she wasn't actually put to sleep for the trial one but did say with the meds they gave her she was in lala land and it didnt hurt abit either. You know I feel like a little baby. As much CP I have been going through for sooo long, I shouldn't be afraid of any pain with the trial implant.

I'm not sure but I think my insurance has already appproved the permanent one, but it has to be done between March 11th and June 8th. That might be just for the trial one though.

Thanks for wishing me good luck - I have my fingers, toes, legs and anything else I can cross. lol
Posted 4/15/2008 5:06 PM (GMT 0)
Yes, the devices are really expensive. I've heard around $40,000. The insurances are reluctant to approve them, but in the long run I think the SCS actually save them money from using less medication and doctors visits, etc...

A truly inspirational success story for the SCS implants is Mike Roman. He had his entire leg removed up to the hip and suffered with phantom limb pain for years. He had a SCS previously, but it didn't really work. He decided to try again with the new techniclogical advances. He now has his life back and is a formula one race car driver!! To read more about his story and other success stories go to www.raceagainstpain.com and click on the heroes and/or stories link.
Posted 4/16/2008 1:16 PM (GMT 0)
Wow, that is truly amazing. I know with God's help my implant will be successful. All I have heard is positive too except on the "neurotransmitor" thread.

My insurance has approved the trial SCS and hopefully they will approve the permanent implant. I agree, it is less expensive than continual drs & specialists care.
Posted 4/16/2008 8:59 PM (GMT 0)
Keep us posted on how everything goes with your surgery next week. Take care and stay strong
Posted 4/16/2008 9:16 PM (GMT 0)
Thanks a Bunch, cookie -

I am trying to update my profile with email address so I you will have it too. There was some trouble with doing this - I'll try again later.

Again thanks for your good wishes. Only 9 days left!
Posted 4/22/2008 5:23 AM (GMT 0)

Never underestemate your trial run. Wires can move and give you powerfull electodes on an area that does'nt need it. I had 4 and a half hours on my trial scs and as soon as I came out from the OR, my wires moved so that the power was zapping my ass instead of my foot. They basically said they would fix it the next fridays aptmt. After another four and a half hours in the OR, they decided to put 8 wires going upward into my back and sending 4 more wired going down my back for a total of 12 wires.

To make a long story short, the coverage of electons or whatever nerver came close to my pain earea. I would have to turn it on so high that mt foot would be turning red and trembeling. Everytime she tried to adjust the probes, It hurt more and more. Finally I made an apptmt to get it remouved, once I got it removed I have had such major musscle spasms across my whole back. Especially in the inplant spot.

It was a major decsission to make, I just wished I had gone to The Dellon Institute For Neurological tratments BEFORE committed myself into that heavy duty scs .

Sorry for the negativity, but thats exactly what happend to me. Others with good stories are hard to find cuse there all excited and took off from the forum.

                           Good Luck To All,

                       and a Pain Free Day..........

                                        mike

.I go for a double neurectomy on May 8th , I got the one and only one left cut out last month and by may 9th I will have no nerves going down my leg past my ankle leaving the only feeling in my foot is the bottom pad.

          I guess I'll wait and see ...........................  (AGAIN)

Posted 4/22/2008 12:50 PM (GMT 0)
Mike, I want to know both the negative as well as the positive with this CSC stuff. I am going to get my lab work done today and the the trial implant is Thursday. Please say a prayer that I will have good results. I feel like it my last chance to get my pain lowered to a tolerable level.

And Mike, I wish you only positive result for your neuretomy on May 8th. It really sounds like a serious procedure! I can't image having no feelings in my leg, only my foot. I guess you will go through physical therapy to learn to walk this way? Or do you just do it on your own?

I seriously hope this corrrects the problems you must be having.

Again, thnaks for the input.
Posted 4/23/2008 12:25 AM (GMT 0)

Lassieluv,

I have an SCS implanted, and, for me, it's worthless.  Now, it does function well, and I do feel a tingling in most of my painful areas.  It's just that now I have tingling PLUS pain.  The best advice I can give you is make really sure that you have a successful trial before you let them implant that thing.  My surgeon couldn't get the leads where he wanted during the trial (leads are placed with a needle for the trial), and was sure that once placed sugically, this would work for me, which it did not.  If I had that to do over again, I'd have them place a lead sugically and not the battery pack until success was achieved. 

The battery pack implant was VERY sore for quite some time, but it doesn't really bother me now.  PM me if you want anymore info.  Good luck and God Bless.

Anon

Posted 4/23/2008 1:16 AM (GMT 0)

lassieluv and all Healing Well forums,

I hate to say negative things, but at the same time, I want to give the experience and advise that has happend to me. I have met many people in the pain management that has had positive experiences with the scs. It depends on what the problem it was in the first place. I will give you the best wish possible for a complete recovery from pain. I never was a religous person, but as the time goes by, I keep thinking that maybe they know something that I dont!!!!!!!

I dont know, but if you need any info, It sounds like I have been maybe through the wash a little longer than you, and if you want anymore experience/advise, please ask because I definatly did'nt realize the procedures/operations magnatude I was going thru when it happened or the percentage of positive and negative results that each O/R visit at the time.

Hope everyone has a pain free day!!!!

        (i know i could use it!!!!!!)

                                       mike

Posted 4/23/2008 1:04 PM (GMT 0)
Hey Mike - I do hope you are having a much need pain free day, or at least tolerable.

The reason the SCS is even offered is that my CP is due from unsuccessful recovery from second spinal fusion. Over time this has left me in excrutiating pain which began in my lower back but has moved into my rt hip, thigh to the point that I cannot walk or even stand up straight. If the SCS doesn't work, I will face a hip replacement which sounds even worse. I'm too young to be having all these problems!

Maybe I haven't been told about the magnitude of this procedure. I have only seen good result in my neighbor who would change a thing about getting her SCS.

I'm sure you know much more than I do but thank you so much for you wishes for a speedy recovery and resolved CP.
Posted 4/27/2008 4:41 AM (GMT 0)
Lassieluv,

I didn't intend my post to be negative, but I sure wish someone had told me what I included in that post before I had my implant done. The truth is, my surgeon and the reps for the stimulator company were pitching this thing to me before they even tried a discectomy. I did a lot of research prior, and really thought I was prepared and knew what to expect, but I did not. They misrepresented the size of the implant. It turned out quite a bit larger than I anticipated, which isn't a pleasant surprise when it's implanted in your side. The implant itself remained painful for a year. My trial was NOT successful, which they attributed to the limited ability to place the leads via needle. They should have suggested surgical implant of the lead and another 1 week trial before implanting the battery pack, but they did not. The SCS implant is a "sexy" procedure for the surgeon; it's new, exciting technology, and I truly believe they push these type of deals because of relationships with the stimulator reps and because it's a procedure that's "rewarding" for the surgeon. I'm sure most don't do it irresponsibly or push it on someone that they don't think it will work for, but I do think there is a bias with some surgeons.

SCS IS a promising, exciting prospect for chronic pain sufferers, no doubt. Just make sure you have a truly successfully trial before you let them implant the battery pack. I sincerely hope it works out for you, and you get relief from your pain. You will be in my prayers.

Anon
Posted 4/30/2008 6:07 PM (GMT 0)
I'm sorry to hear everyone's bad experiences with the SCS, but I've mostly heard almost all good things about it. And the people who do have complications with it still say they would do it again and that the SCS is invaluable to them.

From my understanding they have been implanting SCS's for over 30 years. Throughout that time the technology has gotten better and the implants size, effectiveness, invasiness, etc... has gotten better. The implants I have seen are about the size of a pacemaker and are getting smaller and lighter every few years. Charging the battery is also getting better. It is also my understanding that the surgery they do to implant the SCS in minimally invasive, done as an outpatient procedure, and the person is awake the entire time the procedure is being preformed.

I have no doubt that the doctors don't push the procedure and increase the hype about it, but I didn't think it was bad as everyone is making it seem. Maybe I'm just jaded.
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