What I wish my discharge Instructions said

INFLAMMATION

by SamanthaS - 2019-04-03 17:22:43

Your first paragraph is very interesting - I also suffered a great deal from inflammation - swelled up and could not eat for 8 weeks.  Had both leads revised at 8 weeks and then finally diagnosed with pericarditis after MRI.  Started colcrys 10 days ago and finally feeling almost normal.  

Before the ER visit and inplant, I was very fit and exercised a lot.  Had been diagnosed with vestibular migraine but that wasn't it!!  AV heartblock, 100% paced.

Arm Restrictions

by RedRocksGirl - 2019-04-04 01:43:07

I had my first ICD implanted in January, and like you was suprised at the limitations of my left arm use - not because they told me not to do things (other than the not lifting it higher than my shoulder and not carrying more than 10 pounds - both of which weren't even physically possible ANYWAY!) but because I hardly had any range of motion. I figured out how to get a bra on and off with no problem, and how to do a low pony tail, but also couldn't close the car door or reach for a coffee at the drive through. Glad to hear I'm not the only one.

I'm 11 weeks out and still have some pain and achiness in the shoulder area and it's tight where the leads are going into the subclavian artery when I stretch or reach for things.  I got my EP to approve some phyiscal therapy sessions for my range of motion.

I was never told of there being heart inflammation after placement, although it makes total sense to me. How do you know when the inflammation is down? Are there any "symptoms" of it? 

I'm a leg amputee and use forearm crutches to walk (no prosthetic leg), my ICD is subpectoral and I use my pec muscles every step with the crutches so am still having LOTS of pain where the ICD and the leads are. I'm wondering now if this would increase inflamation in the areas they cut into the muscles to put it in.  Thoughts?

Arm restriction with PM insertion

by Selwyn - 2019-04-06 13:38:40

There is no medical evidence to suggest arm restriction advice achieves anything after insertion of a PM. You are best doing that which you are comfortable with.  Advice varies from department to department.

( midwives regularly used to give birthing Mums enemas- no medical evidence! Health visitors used to regularly do screening tests for baby deafness - waste of time! etc...) 

Does anyone in their right mind thinks that moving your arm is going to detach those leads? Elevation of the arm cause the collar bone to rotate and be elevated,  the distance from the pacemaker to the subclavian vein is shortened ( try it!) .

The medical profession has given lots of advice based on common practice rather than evidence. Even when based on evidence, unless the studies are sound and transferable to your  population there is always some doubt. ( I see this week that sodium valproate, a drug used to treat epilepsy, is now not to be given in pregnancy- for years medics thought the risk was acceptable. How things change!)

[see     Proc (Bayl Univ Med Cent). 2009 Jan; 22(1): 3–6.
Appropriateness of sling immobilization to prevent lead displacement after pacemaker/implantable cardioverter-defibrillator implantation.

ref:https://www.ncbi.nlm.nih.gov/pmc/articles/PMC2626349/]

days not weeks

by dwelch - 2019-04-07 02:55:02

I am on pacer number five, maybe I am lucky maybe not.  I use pain to guide me as far as the use of the arm goes.  Every day post op I can use it a little bit more.  Long before four weeks am I back to washing my hair and doing most things normally.   Well not sports but I have not done sports in a while, that I would take time to do.  but day to day things I let the pain guide me, move the arm slow and stop when it tells me...YMMV.

Recovery Exercises

by CyborgMike - 2019-04-10 14:12:06

After about day 3, I did a little bit of arm exercise each day and built up to a "set" 3-4 times a day by the end of the month. I think these basic exercises, done gently and using pain as my guide, helped recovery a lot. I couldn't find the PT guide I used (looked like it was from the 1960's), but this one is close: https://ahc.aurorahealthcare.org/fywb/x11275.pdf

I found that doing the exercises bilaterally with both arms (not just with my left arm) helped. I would do the four exercises in the PDF, gradually building up higher and higher. The 90 degree exercise had to wait until week 2 for me. I still do these four months later to keep things stretched out.