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Experience of spinal cord stimulator; Posted by Peter 72 copied by Alastair
Topic Started: 20 Oct 2012, 11:24 AM (2,340 Views)
Alastair
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Alastair
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Posted by Peter 72 copied by Alastair

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Member No.: 560
Joined: 3-October 12



Hi all
Ive been lurking in and out of this excellent site for some time now, thought it about time that I registered and tell you my opinion on adrs and spinal cord stimulators. I had adr surgery in February 2001 at Salford Royal Hospital, my surgeon was Mr E R Ross spinal consultant, he his in my opinion an excellent surgeon and just a very nice man. I had two charite discs fitted, he also did a fusion and fitted a titanium cage along with two screws, looks like scaffolding. Prior to this I had two spinal operations done at Fairfield Hospital Bury, these were done in March and October 1996 and were done by an ortho surgeon. My pain over the next few years just got worse, while using all the usual pain meds, physio and lots of visits to pain clinics. It was then that I was told about spinal cord stimulators, and after a long period of medicals and going through a vetting procedure it was decided that it was for me. I had my first trial temp stim fitted on 28th January2008 at Salford Royal. The surgery was carried out by Dr David Mcdowell consultant in anaesthesia. This trial was for done for two weeks. I went back in hospital on February 11th 2008 to have it fitted internally, both operations were carried out under local anaesthetic, I never felt a thing. For the next three years I was nearly pain free, all power to my stimulator. This stimulator lasted until August 2011 when the battery failed. I had my new rechargeable stimulator fitted at the same hospital. This operation was done by Dr Abdul Lalkhen consultant in anaesthesia. In my opinion Dr Lalkhen is one of the nicest, kindest doctors I have ever met and I have met a lot in my lifetime. This stimulator should last up to nine years, you recharge it by wearing a charger belt, this gives you freedom to move about and you charge the charger belt up by plugging it in to the mains. My stimulator has been like a new lease of life, it covers all my leg pain and some off my lower back pain.
Regards Peter
Founder of this board 24th February 2007
Slow and Steady Wins This Race
Over 23 Years experience and research into spine surgery and over 2500 surgeries discussed and recorded

ADR L5/S1 Surgery with Dr Zeegers 26th July 2002 in Munich
8 facet joint ablations 28 8 12 with Dr Baranidharan and Jake Timothy in Leeds Diagnosed Forestiers disease
Your Best Asset Is Your Health
I live in West Yorkshire aged 81 now

Knowledge is power
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spookcxi
Newbie
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Hi

I had my spinal stimulator fitted in 2005 although as I said at the time my pain was in the lower back and 'some' intermittent pain in the right leg, but the majority was lower back. The stimulator was fitted under a general and i was back home the next day. It felt as though I had been kicked by a herd of horses round my waist where the electrical cord was fitted, but that soon went and from then on I dont even know its there apart from a slight lump under the skin of my stomach and the cord snaking under the skin round my waist. I have the stimulator on about three times a week for localised pain but it doesn't cope when the pain is at its worst. i could have done with it being fitted further up the lumbar spine but the surgeon said it might interfere with the bladder and bowel if it was. The battery is said to last five years but I have had it in for seven now and I have still only used a quarter of its life. When it runs out it is replaced under a local and the battery of the hand held selector, I change when and if. i would say if you have bad leg pain then go for it as the relief is palpable, but for chronic low back pain then probably not. I am hopefully going onto the list for my ADR soon but its a case of choosing which hospital and surgeon from the list!!

Spook :rolleyes:
Bad fall 1975
Decompression @ L4/5 1976
Bad fall onto lumbar spine 1994
Muscle wasting right calf-loss of plantar reflex right foot 1995
Denerative disc disease diagnosed 2003
IDET surgery 2003
Fractured C7 2004
Numerous beta block injections
Acupressure and acupuncture
Internal spinal stimulator fitted 2005
Decompressions @ L1/2 2010
ACDF @ C6/7 2010
2 wheels on my wagon but I'm still rolling along
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Bex
Member
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Hi Spook,
My stim was originally fitted with one lead 2 and a half years ago for leg pain resulting from my lower back which started 7 years ago. They really struggled to get the stimulation in the right place and so they gave up and fitted a second lead at end of March this year. I had to have my battery re-sited as well as it broke free from the tethers and settled so that it stuck out from my abdomen at a weird angle (and hurt!). I have a Prime Advanced model. I use mine mainly at night orwhen I'm lying down or sat on the sofa as that is whan the leg pain is worst. Before I had the 2nd lead I was using it at around 6.5v - 8v, now I can't deal with it any higher than 0.45v - 0.55v as it then starts to make my muscles fire randomly - it is so funny when that happens as I can't stop my leg from kicking out repeatedly! Like you, it doesn't cover my pain when it's really bad and also does nothing for my lower back pain so I'm still on all the same meds as before but my back has got significantly worse since the op - my problem is now from L3/L4 down. The way I see it though, I'm better off with it than without. Having the 2nd wire fitted was extremely painful and I wouldn't want to go through that again as the 1st one was grafted in by that point and there was less room to manouvre it into place. Do you get sore where the wire snakes round from your back (if your battery is sited in abdomen)? I still get quite sore where mine are. When my battery is dead they will do it under general - couldn't cope with that done under local as well! It is a nice feeling - I have my sensations like pins and needles down my legs - what is yours like?

Bex
Prolapse L4/L5 2005, Osteopath & physio 2005, Lumbar epidural 2006
N/R block x3 2007-09 3rd resulting in hemiplegic attack
Physio, hydro, TENS & PMP
SCS -1 lead implanted April 2010
L5/S1 prolapse Oct 2010
Prof Whitfield said no surgery indicated June 2011
2nd lead implanted SCS 290312 & problems since - extreme pain, p&n, muscle problems etc.
CT scan 030812 shows circumferential bulges below L3/L4 with superadded central protrusions below L4/L5. No frank neural compression.
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spookcxi
Newbie
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Hi Bex

The feeling is quite pleasant unless I have it up high and sneeze or cough and then its chuffin' painful, but otherwise its OK. I have to be carefull too if its on and I stand up as it can feel quite unpleasant plus if I dont sit at the right angle I dont get the right cover. I have set off three shop alarms when using it whilst out and about which is hilarious as the guards come scuttling out and I show them the lead and the battery lump. I dont feel anything at all now but just after fitment as i said before it felt like I had been kicked by a heard of horses. If I get the ADR I am after I think I will have it removed as by then it will have been in for some years and I hope the ADR will release me from this. My battery when its finally flat will be removed under a local whch I dont mind at all. I injured my shoulder badly recently and had a long operation under a neck block which allowed me to watch the whole operation ona monitor which was unreal!! but no pain until he began to drill into the bones and then it hurt like buggery.

Speak soon

Spook :P
Bad fall 1975
Decompression @ L4/5 1976
Bad fall onto lumbar spine 1994
Muscle wasting right calf-loss of plantar reflex right foot 1995
Denerative disc disease diagnosed 2003
IDET surgery 2003
Fractured C7 2004
Numerous beta block injections
Acupressure and acupuncture
Internal spinal stimulator fitted 2005
Decompressions @ L1/2 2010
ACDF @ C6/7 2010
2 wheels on my wagon but I'm still rolling along
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atom
Newbie
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Hi and I realise that stimulators are not a huge topic on this site but for those who are implanted or considering implantation something has recently come to light. The ipg is replaced on failure through the NHS but should the charger or controller fail after 12 months they are out of warranty. Patients are advised to take out all risks home insurance to cover loss or damage however this does not cover manufaturers faults that may occur during the rest of the ipg lifespan. With ipg units now lasting in excess of 10 years I have asked Medtronic what their intentions are to face up to the situation. With controllers at 800+ and chargers hovering around 2500+ depending on the provider this is potentially a huge stress factor for the patient. I will post again when Medtronic suggest a solution. I do know that the older controllers first issued approx 6 years ago for restore labelled "my stim" are developing age faults and it will be interesting to see if this escalates in the coming years. Currently their does not appear to be a repair system in place.
Also the new restore sensor which has the capability to allow MRI scans now has another drawback as if it is a replacement the chances are that the lead will still prevent MRI if of the older type so beware of this also.
In the meantime those using the system may find it beneficial to grab a few spares if they become available anywhere.
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ajj1001
Advanced Member
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Very useful info, keep us updated.
Std Meds Gabapentin, MR Tramadol, Paracetemol, Laxatives
2011 Sept PLIF L4 - S1
2010 May Discogram L2/L3 & L3/L4 both looking ok.
2009 May PLG Fusion L5/S1 Charite in situ
April Dismissed
2008 Caudal Epidural failed to work
2007 Deterioration L5/S1 Facet arthritis, Loss of disc height.
2004 Returned to Work
2002 Aug - physio
March 2 level ADR Charite L4/5, L5/S1
2000 Broadbased disc prolapses L4/5, L5/S1
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Alastair
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Alastair
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There's a lot in this posting that I didn't know so please keep adding to it for everybody's knowledge
best,
Alastair :D
Founder of this board 24th February 2007
Slow and Steady Wins This Race
Over 23 Years experience and research into spine surgery and over 2500 surgeries discussed and recorded

ADR L5/S1 Surgery with Dr Zeegers 26th July 2002 in Munich
8 facet joint ablations 28 8 12 with Dr Baranidharan and Jake Timothy in Leeds Diagnosed Forestiers disease
Your Best Asset Is Your Health
I live in West Yorkshire aged 81 now

Knowledge is power
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atom
Newbie
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I am in touch with Medtronic and awaiting some recommendations to come from them but I doubt that they will be anything exciting. Springing to mind for me as possible solutions are the obvious that NHS should cover throughout the implantation period which I am certain would suit Medtronic as well. Alternatively they set up a repair system rather than a write off system which could make the cost of failed units considerably more reasonable for the patient. Also crossed my mind that they could come up with an extended manufacturers warranty through a Company of their choice. If anyone has further ideas it would be appreciated as currently its a case of hunting around for redundant equipment of which there isnt much around. I did see on another site a Medtronic patient in panic as theor charger had packed in near Leeds begging for someone to help them out with a temporary recharge. It is enlightening that should the battery actually run out then the ipg becomes damaged and would need replacing anyway. Once Medtronic have given me more information as to their intentions I will post again and in the meantime I will take it up with my MP as basicallly in the vold light of day it is an NHS problem as well which is being swept under the carpet. In the meantime I do have a Itrel controller available if anyone gets in a muddle. Maybe we need a " communal bits bank" !
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atom
Newbie
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Medtronics response on nthe 7th November


At this time these scenarios are evaluated on a case by case basis, but I do appreciate the thought process around a more comprehensive policy for these instances, we will continue to work to improve.

____________________________________________________________________

Considering the accepted working life of the charger is only 5 years I am sure they should!
B)
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Bex
Member
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Hi,

I lost my programmer (Mystim) out of my handbag in a superstore and had to claim on the house insurance and it was almost 600. When that developed a fault of the casing coming apart a year later I got in touch with the hospital and asked for a new one as it was a fault rather than damage. The Rep left the clinic with one for me and when I looked at it, it was very old and used. I went up the wall and so did the clinic a we didn't know if other people had dropped it & caused damage internally that may appear down the road which could stop me getting a new one if it broke because of the damage. It took weeks for the rep to finally drop off a brand new one and the clinic apologised profusely. I was disgusted with Medtronic for trying to pull that stunt and really should have put a complaint in. :angry:

Let us know if you hear any more.

Bex
Prolapse L4/L5 2005, Osteopath & physio 2005, Lumbar epidural 2006
N/R block x3 2007-09 3rd resulting in hemiplegic attack
Physio, hydro, TENS & PMP
SCS -1 lead implanted April 2010
L5/S1 prolapse Oct 2010
Prof Whitfield said no surgery indicated June 2011
2nd lead implanted SCS 290312 & problems since - extreme pain, p&n, muscle problems etc.
CT scan 030812 shows circumferential bulges below L3/L4 with superadded central protrusions below L4/L5. No frank neural compression.
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atom
Newbie
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Hi

Nothing seems to improve much with Medtronic though neuromodulation departments seem to be developing "bits boxes" I have a synergy controller 7435 and if anyone is desperate I am happy for them to contact Alistair and loan it while thet try and sort Medtronic out. I also have a spare rather ropey looking My Stim incase I get in a muddle. No advances on my biggest worry which is the charger. I do keep my "My Stim" in a solid case fractionallly over its size witha Medtronic card in it giving my name and address and also that of my Consultant but obviously that is dependant on it getting found if lost. I am not sure if they are all registered like hearing aids and traceable but they should be. I would have thouught that Medtronic would value the NHS account and try harder to remedy the problem but maybe it is not highlighted enough. After three decades of scs you would think there would be few problems left to solve.
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Anne
Full Member
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Thanks for all this information. Well all I can say, a stimulator is off the list.
I am off to the hospital pain clinic next week and just wanted to know about the stimulator and any other new "widgets" that are coming onto the market

I am struggling with medication because I have a problem with swollowing the tablets - always have but as I am informed that I am on a low dose I think I might stick with what I know plus a hotwater bottle !!!

My surgeon did say if I wanted any more help he will see me so i think thats the answer... He had quite a bad experience with a patient just before me and I think he was actually stuck for words. We will see...............

But I have had an x ray lead injection which didn't work, anyone help with the next step up from there for pain.............
After being messed about by my doctors in Kendal for many years I went privately in 2009 with Mr Shackleford. Because of my age I couldn't have ADR instead he decompressed L4/5 and L3/4 Still got issues: sciatica, groin pain. Seeing consultant in February in Spain where I now live. We will see ....................
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Alastair
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Alastair
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What does your latest MRI scans say?
Best,
Alastair :D
Founder of this board 24th February 2007
Slow and Steady Wins This Race
Over 23 Years experience and research into spine surgery and over 2500 surgeries discussed and recorded

ADR L5/S1 Surgery with Dr Zeegers 26th July 2002 in Munich
8 facet joint ablations 28 8 12 with Dr Baranidharan and Jake Timothy in Leeds Diagnosed Forestiers disease
Your Best Asset Is Your Health
I live in West Yorkshire aged 81 now

Knowledge is power
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