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)

One day at a time

The big day has finally arrived!  I mentioned weeks ago that a birthday present for 2 teenage girls was a shopping trip to the Westfield, Shepherds Bush and tomorrow is D day.  They are excited….not so sure about Duncan.  The words cold feet spring to mind.  I will make a decision whether I can manage to go with them in the morning – at least there is plenty of disabled car parking and lots of coffee shops.  I think that there may even be shopmobility and the option to borrow a wheelchair if it all becomes too much – and that is just for Duncan!  So the girls have their vouchers and their birthday money, and instructions about what is considered a suitable purchase that mother will allow them to wear.  Oh, to be a teenage girl again…or not.

Meanwhile another one of my group is currently undergoing a scs trial, whilst another has had hers cancelled as she needs another operation.  She is absolutely gutted after struggling with chronic pain for years.  Yes, she has another condition that is causing her pain and obviously requires treatment, but she has a back story that is very similar to mine and so many others – an initial back problem from a bulging disc, several failed  surgeries and the resulting pain which nothing helps.  Drugs, side effects, sleepless nights, the desperation that sets in to find something, anything and it becomes a vicious circle.  By the time we arrived at the inpatient programme, we two had definitely been round this block several times and taken our respective families with us.  But we gelled immediately and understood each other, so this is why I can understand how desperate my friend is now feeling because I’ve been there.

Personally, I’ve felt rough for the last couple of days and I think that I probably have tried to carry on and overdone things.  The overwhelming need to be able to tell everyone that you are feeling great and that yes, it has absolutely all been worth it, is enormous.  On Friday I decided that I needed to show my face at a coffee morning hosted by the head at my daughter’s school.  A downside was that it was from 8.30 am – a dreadful time of day for me.  But I made it and my friend and I duly poured coffee and snacked on mini danish, before the first friendly face popped over to say hello.  This was followed by a couple of other parents, and then I spotted a friend talking to the headmistress, who has been very supportive of the whole family over the last year.  She immediately wanted to know how I am doing, as did my friend whom I haven’t seen since the beginning of term.  I could feel myself becoming clammy and faint, and the ability to speak with any clarity disappeared rapidly as my senses seemed to fail me.

On returning home – still only 9.30am – I had 2 more visitors during the course of the morning.  Whilst it was lovely to see everyone, I just felt like I was on a loop as I tried to describe the effect that the stimulator is having, no it isn’t a cure, hopefully it will help me to be able to function better etc., etc.  Someone else has commented today that I seem to be disappointed in my stim results and I am sorry that I may have given this impression.  It certainly hasn’t given me a magic wand to waft away all the pain, and the relief I experienced during the trial was different to that which I’m feeling now.  I’ve already mentioned that I require a higher level of stimulation voltage on the lithium battery, and that I can understand that I am adjusting to and thus becoming used to the sensations.  I am a bit worried that I will continue to need higher and higher levels of stimulation and will thus “run out” of options as I reach the top dose!  But rationally I know that this is a very long way off and that the changes are due to being more mobile and the stim is not yet scarred in place securely yet.  One reason that we are not allowed to sleep with the stim turned on, is that it is important for the body to have periods of non stimulation, so that it can really appreciate it when it is switched on.  The parasthesia should not become a new base line.

So it is tough explaining the results over and over, when the expectation is so high.  Our expectations on ourselves are the highest though, and we all desperately want this treatment to be the answer to our prayers, so if I can have more better days and nights than not, then I have won the lottery.

More juice required!

Yesterday I managed a trip out for a couple of hours to our local shops and we had some lunch.  I kept the stimulator switched on and it is the strangest feeling as you know you have this electric current buzzing inside you, yet nobody else has a clue.  I seemed to run into people I knew at every turn and everyone was so kind, but it wasn’t long before I was desperate to get home and avoid more conversation.  I know that people mean well but sometimes the last thing you want to hear is “you look so well!”when you feel ghastly.

My old friend was back with a vengeance last evening, running the length of my leg and searing through my foot.  I struggled to get any comfort initially and emotions were running high.  Since the trial device has been replaced with the implant, I have needed to increase the level of input in order to feel the same stimulation in the same places.  When I couldn’t prevent the foot pain I started to feel bubbles of panic rising – “what if I become too used to the sensation too quickly and it is no longer helpful? What am I going to do?”.  This was the time to employ some of those other techniques we were taught and to squash the panic with the voice of reason.  If I need to use a higher rate of stimulation to achieve the comfort I need, then so what?!

So it was that I did 10 minutes on the exercise bike this morning and then managed a decent walk with the dog and Duncan,  Duncan says that he can notice a difference in the quality of my walking too which is an added bonus.  More in the morning as I’m nodding off here!