Spinal Cord Stimulator

[Curlygirl54]

Hi Folks,

My PM doc seems to be nearly at the end if the road with me - I've been a chronic pain patient for nearly 40 years now - I'm 60 this month. He's listed me for one more procedure but after that the only option is for referral on for assessment for a SPS. He is not very optimistic about this as I have so many pain sites in so many areas of my spine, ribs and SI joints.

Has anyone any experience of SPS? Would really appreciate your feedback if so.

Wishing everyone as comfortable a day as poss.

Thanks

Shirley

[gullwing]

Hi Shirley, I am happy to discus my findings and my own opinion regarding the SCS..... Having reached an impasse the PM team moved to assess me for the SPinal Cord Stimulator - this six month process left me with many unanswered questions........ When I looked at the device ie probes, stimulator & battery pack, cables and then the external "remote control" I was staggered to see how big and bulky the pack was. Theremote was hardly discrete and you need to place it so close to the stimulator to operate the settings......The two weeks stay in hospital with just the probes inserted (wearing the stimulator externally) to assess/moniter before you back back into theatre to have the stimulator buried in your abdomen all seemed "primitive"

I got to speak with the Surgeon who filled me with confidence in his ability to perform - but then I still needed answers about the actual stimulator device ..... At this point I am faced with "What happens if I can't accept the stimulator"

I discussed this further with the team and I had to seek assurances that my future care would not be jeopardised if I went against their advice by turning down the Stimulator.....

The Stimulator was offered to me as an addition to my medications, and whilst there was every chance that we could reduce my meds by half - it meant I was still taking the meds and still suffering their side effects..

Finally after further discussions with the Consultant Neurology and the Consultant Oncology who both advised to say no...... I went back to the pain management team and delivered the news that I prefer to decline.......

I must say that everyone involved has respected my choices . The Neurology team are still continuing with their high standard of care...... The Oncology team are still continuing with their high standard of care.......... I am with a different dept. within the Pain Management Clinic continuing with specialist care .......must not forget to mention GP - they now hold Primary Care and are always there when we need them........

Some FIVE years on from declining the Stulator I'm still suffering, still taking far too many meds, my condition is progressive but I'm still here, still fighting, still hoping for some medical breakthrough in nerve reconstruction.....I'm still making those choices and above all -still no regrets having declined the Spinal Cord Stimulator........

Be sure to discus every aspect, look at the choices you have, look at future care, look at where you think this Stimulator will change things for you...... If your team can't find the answers then go directly to the manufacturer/distributor to get your answers...... Be sure to know for certain that they will use the most upto date model and not one that they have now superseded... Be sure t to be sure then you will be okay... Good luck ......... Best wishes ....

[Rosetta2014]

Hi Shirley, I have two SCS one in my neck and one in my back. The one in my neck has helped me about 80%. The one in my back worked for 7 days and if malfuctioned and instead of taking the entire unit out my Dr. decided to replace the leads since the battery was find. Mistaked on my by half even though it worked after the repair it never gave me any relief 6 months later it died and now it has to be taken out in a couple of weeks. They put the neck SCS in first and waited 6 months and did the back.

They do a trial period of 5-7 days to see if it works for you and then you decide. So my advice to you is to do the trial and if you like it go for it. But you will alway have pain but you can dull it down with the stimulator I get different programs placed on mind when the old programs stop working. your body will get use to the same programs so you just have them replaced with new ones. By the way the on in my neck is 2 years old. Hope this helps xxx

[Susan1942 in reply to Rosetta2014]

I also had a stimulator put in 22 years ago for chronic pain I have never regretted it as it has reduced my pain by about 50% on a good day My pain is very specific and only in one area The pain is in my perineum as the damage was from a difficult Keillands Forceps delivery when my son was born in 1971 He was aged 20 when I had this proceedure

The actual proceedure itself was as other say 2 part I had it put in and with an external control device It did not appear to be working all that well but and my Neurosurgeon decided to move it by 1cm When he did this he put the implanted battery in Because I was slim he decided to put it in over my hip just below my waist at the back He thought it would be less obtrusive I have had the battery changed over the years several time First one lasted abuot 7 years then 10 years I then hit a spell where on lasted just over 1 year At that time it showed there was not a problem with the battery They then thought it was the lead However again not so I had a fixed electrode put in by the neurosurgeons They decided it was metal fatigue so put a new electrode in which is free. Since that time it has worked fine I still have the old electrode in situ as it would mean surgery to remove it I had my battery checked once a year or can be seen sooner if need be All in all I am pretty happy with it I have it switched on 24 hrs a day and I expect this battery to last about 10 years or more I think in total I have had 4-5 batteries I take medication as well Amitryptline Meptazinol and had been on Gabapentin for a few years but I decided to stop this as I did not think it was of any benefit . I plod along and in some respects I have learned to live with my pain that said I do have times when it really gets me down and I did develope bad depression about 3 years down the line This lasted for several years but nowadays I am pretty stable I have had a lot of other surgery as a consequence of my forceps delivery but the legacy pain is the enduring problem

Good luck whatever you decide

[Susan1942 in reply to Susan1942]

Moved by 1 mm not 1 cm I was told that he was trying to hit a spot like the tip of a ballpoint pen sorry for the confusion

[TonyBennett]

I have just found you guys! And I am SO glad to read your experiences on this subject! On the 16th this month I have to go up to Bradford to have a Spinal Cord Stimulator temp put in. I have lived for too long and gone through too much pain and it taken a long time to get things done. All started in 2000 an now we are in 2104! I have extreme oesophageal pain which cannot be explained by anyone. I live on about 400mg morphine a day! That is way too much and my tolerance to morphine is getting to the point where its not doing any good. In the end after pushing and pushing and pushing the system I am getting a spinal cord stimulator at the Bradford hospital. I am shaking a bit about the whole process. Also as my morphine has given me extreme rhinitis, which means I drown when I sleep! Therefore the second op scares me to death. So the unit is attached to my spine whilst I am awake, the thing is I have to lie on my chest! Without pain control of all the morphine and fentanyl lozenges. The next is the op and I am out cold; when I am a sleep is when I drown and its like being water boarded. Its frightening! I suppose I am taking about 400mg morphine a day! Too much and I hope this unit will assist. Fingers crossed as if it doesn't I am not going to put up with drowning and put up with this pain that cripples you. I don't think the docs realise my predicament. Life just won't be worth living. So fingers crossed that this unit has an effect. And thank you for your explantions

[badbackjonny]

Hi, I have had the SCS trial and it was a huge success. I would definitely recommend going for that. At worst you waist a week, at best you find something that could help you for many years to come. I don't know where you are but I would recommend the Walton Centre at Aintree. They are the best and the longest in the UK at doing this. Distance shouldn't be a problem as they take people from all over the UK.

Like any operation you will find people who have had bad experiences. But I'd go for it.... I did go for it and now I'm getting the full implant in a couple of weeks.

Best of luck to you.