I have my first device implant coming up in a week or so. I know that I'll have to avoid raising my left arm above shoulder height for a time afterwards. Any tips on how to avoid doing this at night? I often wake on my back with one or both hands or arms behind my head.
Someone recommended scar massage to help regain good movement in the left arm / shoulder. Any experiences of doing this? Past minor ops have resulted in keloid scars and I'm told it will likely happen again.
Any other tips on preparing for and recovering from this procedure?
Thank you!
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I'm quite a restless sleeper and found that the best solution was to go to bed on my right hand side and prop 2 pillows in my back - this stopped me turning over in the night, or laying on my back.The procedure is slightly different hospital to hospital, but my wound was closed with Monocryl and then glued with Dermabond. The glue slowly fell off bit by bit over a few weeks and the actual scar that remains is almost invisible - it's just a 3 inch straight line, were it not for the device sitting beneath the skin the scar would be even be noticeable.
Thanks. Those wound closures sound great. What was the reason for avoiding sleeping on your back? I was hoping to have at least right side and back to vary between.
Hi, you just have to be careful, the longer you allow the wounds to heal the quicker the recovery process. I made sure I did everything with my right hand, sleeping was a problem as previously I was a front down sleeper. Mine was closed with glue and the scar is almost invisible, good luck
No one has mentioned the automatic 2 year driving ban if the ICD fires and you lose consciousness even momentarily. I was without my licence for 2.5 years due to DVLA being slow. Very difficult as meant I was stuck on isolated farm, no public transport and one mile very steep hill to get out. No good for a bike with heart failure and even walking a challenge.
Yikes 2 years!? I was told 6 months if it delivers shock therapy. That sounds like a horrendous situation to be living somewhere isolated and unable to drive. I wondered about getting an electric bike if that happens to me. Although you need to peddle a little bit, some of the new powerful ones do all the heavy work on a hill (I live at the top a big hill - fine when heading out, not so good coming home!)
It wasn’t much fun. I too was told of the 6 month ban when it was fitted but no one mentioned the 2 year ban until I visited hospital after it fired and I very briefly collapsed. It was a terrible shock, almost worse than the ICD firing. I do wonder if everyone is made to observe the 2 year ban in such circumstances or if it is left to the medics to decide. I was told by the technician in the pacing department after it happened.I did consider an electric bike but the lanes here are twisty and narrow so quite dangerous for cyclists. Also I was concerned it wold be stolen when parked and they are not cheap. It is also very rainy and windy where I live - not ideal for cycling at my age.
Did anyone else get a 2 year ban after their ICD fired, no one has mentioned it so far?
Thanks HappyJo, great info. I definitely move my arms about a lot at night. I find it hard to sleep on one position. Will be interesting! I think we have a V pillow somewhere. I guess that encourages you to sleep on your back does it? Or does it help another way? It was my physio that recommended scar massage, but I looked up twiddlers syndrome so will definitely not be doing that unless the consultant OKs it.
Hi, welcome to the ICD clan! I'd never heard of an ICD until my SCA and it was recommended. It was an easy op for me, I was so relaxed I slept through most of it and it was all done with little after effects. I tend to lie on my side or front with my arms out so post op was a challenge. I piled extra pillows to stop me from rolling onto my left side or flinging my arm back too far. I was also careful not to over use my left arm for anything heavy for weeks so it healed ok. As for the scar Ive always had infections in hospitals and didnt want to take my chances with this so I sliced a raw onion and strapped it over my scar overnight with gauze and plasters. It draws out any infection and stops the itching although not the most pleasant smell! I now have a hardly noticeable scar, a very neat pale line. I have heard this is good for keltoid scars too but I'd check it up if you can. I dont think youve got anything to lose by trying it. I used it for over a week mainly to prevent any itching as scratching or touching can add infection. Thanks to the surgeon doing a great neat job and my natural remedy my scar healed well in no time!
You wont be lifting much with your left arm for a month or so at first and need to avoid situations where you'd naturally stretch your shoulder and arm just to allow healing without strain. Once its healed a few weeks you can do gentle arm and shoulder exercises, they should advise you after your op. Id sit and raise my shoulders a little, move back and forth and stretch my neck but take it gradually week by week before full arm rotations. 2 weeks after my op I was giving it some welly on the dancefloor! That was before they put me on beta blockers though. The energy levels have long gone for that now. Do ask your cardiologist about all of this when in for your op.
My ICD sometimes moves slightly and can feel like its touching a nerve if I strain it but I can just push it back within its own pocket inside me. You'll get used to it and before long its just forgotten unless you need it to shock and save your life. I certainly wouldn't be here without mine. A few weeks of slight discomfort for something so powerful is a worthwhile trade off.
Don't forget you have to notify the DVLA as you won't be legally driving for 6 months. You'll have to reapply for your licence requesting a consent form for recipients of ICDs so do request well before the 6 months are up and allow time for your consultant to sign it off. Its worth asking yours how long they need for that, to save any delays.
Best of luck with your op and let us know how you get on. We're all here to support where we can.
Thanks for the detailed reply, Frequentshocker. Really helpful. On the driving point I've been told I can't drive for a month post op and must inform DVLA and insurer. I think the 6 month no driving window happens if your device administers a shock maybe?
Alright you’ll be ok without ur license ,section 88 allows you to drive without ur license ,as long as you definitely know that your doctor will sign it off
Thanks for that update. I didn't know that, although I can't see my Doctor signing it off as she tends to pass all things cardiac related back to my consultant. After 6 years we are just about there with balancing my meds now so hopefully, if stable for some time on the latest increase, I may be lucky and get my licence back! Fingers crossed, itll make a huge difference all round.
Yes the 6 month ban applies following a cardiac arrest or any shocks from your defibrillator. Apologies, I was thinking back but if you havent had an SCA or shock you won't have the 6 month ban, lucky you! I had the initial 6 month ban, which impacted badly on my business, then a shock every time ensured I've never got to drive since! I think Ive managed one full day of renewed driving licence, it arrived just as Id ended up in hospital again so 6 yrs on I'm losing nearly all hope. Nearly, not all yet! They now want me stable enough before consenting so its back to trying more meds, but from the previous reactions to meds I doubt I'd be able to drive safely anyway. I do hope you have a much better experience than this, and the lifesaving part is much more important anyway! Much better above ground with my bike than below ground with a car on the drive! Just thinking of the time spent not queuing for petrol now!
Hi Frequentshocker, So sorry to hear you've been unable to drive all that time. A real blow if you depend on it for work / business. For me it would be a major inconvenience but would not impact on my work or income fortunately. But as you say better alive and on your bike!! I had my op on 1st Oct. Felt a bit rough for the first few days and sleep has been quite disturbed and uncomfortable until a few nights ago (for about a week). But now everything is getting much better although I need my settings checked as I'm feeling pulses quite profoundly above 90 BPM. All in all the recovery progress has been quicker than I had anticipated so I'm v happy about that.
Thats good to know, I'm pleased you are recoving well. You're over the worst now and once you get used to your ICD you will forget its there most of the time. Just keep it away from magnets and its not a good idea to keep your mobile too near it either or standing around the security panels in shop doorways! Its so easy to forget though, a sure sign youve got used to your device.
When do you get your next check up?
If you are getting regular palpitations or pulsing feeling it may be worth a call to the ICD clinic to see it you need an adjustment.
I can ring and message the technicians any time I have a query, they are very good.
Otherwise it may be your meds that need adjusting (if youre on any yet) but these all take time to get used to. There seems to be a range of meds to slow the heart rate but what suits one person can be awful for another. I think I'm the cardiologists worst nightmare with reactions to beta blockers as so many don't suit me and Ive had some terrible allergic reactions. However they tried me on Quinedine which seems fine and have now increased the dosage so lets hope it works well. Until June I'd gone nearly a year without ICD shocks and was hoping Id be driving again by now. Unfortunately I was on the brink of a shock each episode and they didn't like me having several per week, hence the need to stabilise first. I'd love my licence back but I do worry about not being safe behind the wheel so I have to go with the advice given. Sadly its affected my work as I was self employed and relied on driving. It would certainly be great to resume the work I loved, one of these days.
Its early days for you yet but it does get easier and if you end up on meds that don't suit well after a fair trial, just ask your doctor or cardiologist to try something else.
Good luck with your new chapter of your life, keep listening to your body, don't over exert and you will be recovered in no time at all!
Alright I had mine fitted 6 months ago ,probably the best way to sleep is put the pillows leaning against you shoulders and turn slightly to the left side ,that way you’ll never be able to move ur arm
Thanks, Ricodan. I tried this a bit but in the end I found for me i could sleep better without the pillows on my left side. Instead I used a theraband to tie my left wrist to my left thigh so it can move a bit but not too far. So far its worked pretty well.
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