Stim Update!

I started this blog initially to keep a record of my trials and tribulations as I had my spinal cord stimulator implanted, but it has evolved into well, ramblings maybe!  Anyway having been reading posts on the support group site, I thought it was time I wrote a 7 month update!

I still feel that I’m learning to live life with my stim.  What I’m about to write will probably be repetitive of other posts on this site, but a recap never hurts.  Living with pain day in, day out is really hard work – exhausting both physically and mentally.  I would love to be able to tell you that having a scs has made everything better, that the pain is gone and that life is back to “normal”.  But I would be lying.  Sorry to make things sound bleak for anyone waiting for a trial, but it is important to be realistic.  Those of us under St Thomas’ know that they pull no punches on their 2 week pre trial course in order to prepare us, but everyone’s pain and experience differs so that it is impossible to predict every eventuality.

For me there have definitely been enough positives that I would do it again.  The stimulation that I feel in my leg, foot & back does ease the pain the majority of the time.  It gives me a feeling of control back.  But a downside of this particular scs (Medtronic) is that in order to continue the pain relief, it must not be left switched on all the time.  St Thomas’ recommend several hours on, several off – but I am finding the periods of time when switched off very difficult to cope with, particularly at night.  I understand the rationale for turning the device off: if the tingling sensation becomes the body’s new baseline, then there is little room for manoeuvre with further pain relief.  But this doesn’t help me when I’m climbing the walls!!  Any advice from out there would be gratefully received….download (5)

I seem to come back to negatives, but I really don’t intend to.  I guess the nature of chronic illness, particularly pain, is that it is always a doubled edged sword.Double-Edged-Sword-of-Social-Media-300x228  As you already know, another major achievement has been weaning myself off oxycontin and it hasn’t been easy.  I feel proud of myself for being bloody minded enough to stick with the withdrawal and I can report that some of the opiate brain fog has lifted.  My memory is better – my kids might dispute this – and I have taken to social media as I feel more able to read blogs and facebook, twitter reports etc – again I’m not sure that the kids see this as a positive.  For me this is a sign that my concentration is improved and that there is a glimmer of the old me still lurking.   But..again a negative,  the pain has increased – I won’t dwell on this although I can relieve it by lying on my back and turning the stimulation up! Not particularly conducive to shopping.

My own post operative recovery was relatively smooth, but one of my pain group did not have such an easy time.  We are all warned about possible complications, but I’m not sure that we really think we may be in that odd couple of percent.  The post op complication suffered by my pain pal was an infection in the electrode lead site, which of course led to him being very ill.  Again I don’t want to frighten anyone, but it is important to be prepared.  The hospitals take swabs and St Ts’ are very clear that if said swabs come back growing any organism that the whole implant must be removed as the spinal cord gives a direct route to the brain .  In this case all’s well that ends well as he had another implant placed a couple of months ago…….however this did make another decide not to go ahead with the implant trial as he didn’t want to risk the same complications.

Headaches seem to be a common side effect of the stimulator – for some people more than others.  I have had them on and off, but another friend did experience them regularly in the first months post implant.  Charging the battery has not presented me with any major problems, although I have found that I need to remain sitting as the connection is too intermittent if I move about.  But I do find that the actual implant is quite painful at times and I have seen comments on the support group from others saying the same.  I am finally losing some of the huge amount of weight that I’d gained and this leaves the implant far more prominent under the skin.  I won’t even attempt to write the language that escaped as I caught the implant, but suffice to say that the air was blue!!!

So, 7 months on…..the young engineer turned 20 and passed his driving test (not sure which is more frightening); the A level student turned 17 and visited Parliament with us and attended a Euro debate with Chris Grayling arguing for Brexit – our son’s voice and own opinions are getting louder by the day and Politics may be on the agenda for uni; the lovely girl remains as untidy as ever, as politically correct (we get told off if we tease her brother for not being stereotypically gay enough – you know, tidy, love his mum) and showing great artistic flair. Whilst the kids probably don’t notice whether the stim has made much difference to my pain or not, Duncan would tell you that 7 months on he can see a big difference, even if I can’t always distinguish the good days from the bad.  It hasn’t made a difference to my worsening Ehlers Danlos (another blog post!) So no, it hasn’t been a miraculous cure, made me better or all the comments that people say/ask the chronically sick – but yes, I would do it all again in a heartbeat to just be able to experience some relief.

2016-04-29 19.05.58                                                      Student engineer’s first lesson2016-04-29 19.04.45

A level student drawn by his sister!                                                     

Retune & Reunion

Last Friday was the 9 month follow up for our St Thomas’ INPUT pain group.  I went with mixed feelings.  Eagerness to see friends who understand me and trepidation for who the scs had been successful for.  Last May the eleven of us had such high hopes, desperate hopes.  But the pain team drew no punches when it came to the success rates – 8 or 9 of us would go ahead with the trial, and it would be successful for approx 2/3 of us.  I can still remember looking round the circle of grey faces etched with pain, as we all wondered who would be the lucky ones and silently praying to be among the number.

As it happens I needn’t have worried.  I had an appointment first with the nurse where I admitted to a pain flare up over the last few weeks – hence inability to manage to blog on top of life – I do think that this has been related to dropping the oxy dose.  Any suggestions out there for coming down from this final  12 hourly 5mg gratefully received!  My sleep is disturbed again and I’m waking early in pain, so the nurse says not to push myself with the drug withdrawal and definitely not to reduce the lyrica yet.  But I did get a retune!! images (16) On describing the stimulation and that it wasn’t quite covering all the pain regions now the levels are higher (inner thigh, undercarriage etc), my implant programme was changed to expand the band width of each electric pulse.  Imagine the pulse as a ball…..the diameter of the ball coverage has been increased, whilst the intensity remains the same.  It has really made a difference and not only am I feeling the stimulation more widely, but I am using a lower setting.  Win, win.  Back to the INPUT session ….

Only 3 of us turned up. reunion Dee and Ben, you are both of course let off……one in Guys having the permanent implant and the other snowed in up in Shrewsbury.  It was fantastic to see the other ladies, both whom I’ve kept in touch with, but we all would have loved to know how the others (the men!) have got on.  We did meet some of the participants in week 3 of a 4 week course which was interesting.  A couple of them had already had stimulators which had failed – one lady had received 2, both failed.  Jean and I both felt guilty sitting there with medtronics buzzing away pretty successfully!  Zena from our group decided not to go ahead with the trial for the moment and has had successful pain relief from epidurals at the Royal National at Queen Square.  I have experienced some stim envy over the last fortnight as Dee has had a high frequency stimulator fitted, which means that whilst she doesn’t feel an electric pulse, she can have the device on ALL THE TIME…….this means  ALL NIGHT.  I’m so jealous!!

We both have similar stories, similar failed surgery and pain in the same areas.  The difference is that we have different consultants – it is hard when 2 consultants in the same unit are saying different things!  Who do you believe?  I have been assured that I have the best device for me – apparently the rechargeable medtronic lithium devices can be reset to be used a high frequency, so it is always an option for the future.  Meanwhile I continue with the drug withdrawal – brutal – and hope for a decent night’s sleep!images (17)

Apples & Pears

Last night I dreamt of Manderley……..oops, getting carried away and a tad confused, no Daphne du Maurier am I.  But I really did sleep last night and dream! Slightly odd dreams, but I only woke once which meant I managed a 6 hour stretch again.  No mean feat as the implant site is really painful.  But to wake in the morning, after so many years failing to sleep, and to know I have had hours of unbroken sleep is just wonderful.

I had another slight bleed last night from a different area, so Duncan has added another dressing to the patchwork.  One problem of course is, that as the blood dries, it becomes very stiff and this makes the whole area even more uncomfortable and itchy.  I hope that I will be given some instructions tomorrow about outpatient appointments, dressing change, suture removal – anyone else out there who can tell me if I’ll go back to St T’s or have it all done at my GP’s? Of course, I do have access to my own supply of nurses who did all my dressings after my last surgery…..

Something I need to clear up is that yesterday’s comments regarding the household chores was directed completely at those living under the same roof as me!!  I will quickly point out that yesterday help was on hand in the form of my fab mum, otherwise known as Mrs Mop in Dad’s post, who not only tackled the dog hairs and bathroom, but also braved her granddaughter’sbedroom.  And that is even worse than her grandsons’!!

Duncan spent the morning in the garden, enjoying the last of the summer sun and mowing the grass, for what he sincerely hopes will be the last time.  He gathered cooking apples and pears – I don’t exaggerate when I say that the tree is groaning under the weight of pears.  With my Medtronic Stim switched on, Scotland v USA on the TV, I perched and I started peeling!  3 crumbles and a pie later, I was pretty pleased with myself. It was the surgical pain rather than my pain that finally got to me, so I’m feeling very positive.  The only fly in the ointment today is that I am unable to turn “on & off” with just my programmer “MyStim”, having to use the additional antenna attachment instead.  This may be to be expected whilst the wound site settles…..or I might be doing something wrong. Anyone out there with any experience or answers?

So to the other “apples and pears” as I wend my way to bed and hope for more sweet dreams tonight!

Hit by a bus…..again

Good morning! It was a long evening, as I didn’t arrive back on the ward until 5.40 and we got home in time to watch Strictly with fish and chips.

The procedure was done by a different set of doctors, but the ward nurses and ODAs were familiar faces from a fortnight ago.  Initially no one seemed to know what type of device would be implanted, but then the Medtronic rep, a young man who is very personable & rather easy on the eye (politically incorrect to say, I know) popped in to have a chat.  The upshot of this is that, after a further chat in theatre with Dr Pang, they decided that I could have the rather pricey rechargeable neurostimulator – the implant is slimmer and if cared for correctly it should last longer (9 – 10 years dependant on usage).  Dr P switched me on in recovery and the good news is that the coverage on 4 – 5 volts continues to cover my entire pain area, and I am allowed to use it immediately.  I believe that with a rechargeable device the normal practice at St T’s is that the recipient cannot use it until they have been seen by the CNS in outpatients.  Hope no one gets in trouble – particularly me!IMG_0769

The down side is that I feel pretty rough this time.  On return to the ward my blood pressure was in my boots and I continue to feel nauseous and light headed.  My back is ok if I remain perfectly still…..ha, ha, ha! Not really surprising, I hear you say, as this is the second time in as many weeks to be cut, pulled and pushed – thank goodness for the nursing pillow that fits round me and prevents anything from touching me!  I now have enough drugs to start my own pharmacy, but the anti inflammatories were very welcome last night – the prophylactic antibiotics not so, but I have prepared for their unwelcome side effects this time with natural yogurt and Canesten.  Enough said…..

I actually slept quite well, although I did have some oozing from one of the wound sites – step forward nurse Duncan.  So begins the recovery process, including the agonies of waiting for the family to clean up, cook and take over household duties that they can’t see need doing!!  Then there is a very thick user manual to read before the electronics student gets his hands on it…….

Hmmm, too late!  He has found the pile of early Xmas pressies I was sent home with, including a very swanky camera style bag for the charger, pads and leads.  Now I have to contact my insurers – household to cover the devices for £2000!! & motor to inform them I am wired – literally.  I wonder how many of you saw the TV series Humans?  I can feel the stimulator beneath the skin – is this how it feels to be a Synth?!!image