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….
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. 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.
Student engineer’s first lesson
A level student drawn by his sister!
13 thoughts on “Stim Update!”
Great read!! I look forward to seeing more of your posts
Thank you, appreciate you taking the time to read, C x
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Great read Claire ( and a fab portrait by L!) x
Thanks, Nina. How are you doing?
Getting there Claire. Got my first Pain Management appointment since my op this week. Now it’s done, the plan is to get me onto one of the chronic pain intensive physio courses, so watch this space!
Glad that you’re in a better place since the implant, even if it’s not perfect. You should be proud of how far you’ve come, my friend. x
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Very new to Scs. I had my implant fitted at St. Thomas last week, and so far is working to a degree. It would appear that I have the same Scs as you do Claire. I enjoyed reading your blog, wish I had seen it prior to implant.
On one of your blogs you mentioned about having to use the paddle (long cord) to turn on/off etc. Is this still the case, or can you turn the device on/off by Mystim controller, and not have to carry the long cord with you. Like you say it does not fit in the little bag they supply you with.
Like I said I am very new to this. Hope you can answer my question. Thanks
Hi Sue, hope you are getting on ok with your scs although very early days. In answer to your question, yes I was able to turn the implant on & off with the Stim controller alone after a couple of months. I think this was probably when the swelling went down. The controller needs to be placed directly over the implant in order to work, so it takes a bit of getting used to as you can’t see it (unlike if the implant is in the abdo). Keep in touch! Claire
I’m so glad it gives you some relief. I am on my third one. It does take maybe 20-25% of pain, unless I have a flare up, then all bets are off😊. But as you said it’s better than nothing, and allows me to do an extra something in my day. Sometimes that’s only doing a load of laundry and making dinner. But I can feel a sense of accomplishment. I wish you lower pain days and that you continue to feel some relief with SCS. 😊
Thanks, Kathleen, and thank you for taking time to read my ramblings. We implantees must stick together! It really helps to know we’re not alone and not unrealistic, C x
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Hi Claire, I was glad to find you through a #painkills2 post. I have an Occipital Stim from Boston Scientific. I had my first one put in in 2010 and after a wire coming undone, a second one put in in 2013. I’d do it again in a heartbeat. I try to view it as mostly positive. It has improved the quality of my life, however it is not a cure. It works better some times than others, and I don’t know why. My second surgery, I experienced infection in the skull incision, but antibiotics and a daily wound care nurse save me from having the whole thing ripped out, treated, and done again. Good luck/bad luck intertwined. Now, in addition to the OCS, I get Botox injections. Together, the two are a good team for me. Still, not a cure. Still no pain free days, but people who see me say they see less pain across my face. So I am wearing it differently. I would do it again in a heartbeat. Happy to chat more. Thanks for your post. I don’t know anyone else with a stim, so it’s nice to find you. Wishing you bearable days and then some.
Hi Lisa, nice to meet you! I think it is really important to support each other – sounds like you have been through it! A friend asked me the other day if I would do it again and I definitely would just to have the control. I think that I am more relaxed…..keep in touch, C x
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I look forward to staying in touch Claire and supporting each other to things most people just don’t get. And I am happy they don’t because that means they don’t experience the pain we do. Empathy does go far. Hope today is a relatively good day for us both!
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