To date you wonderful lot have been great at coming up with answers, so here’s another…
I developed severe phlebitis following my 2nd chemo dose resulting in extreme pain and restricted flexibility, and arranged to have a PICC line inserted.
It took THREE staff members FIVE hours to finally get the line in.
2 weeks after my chemo ended (Feb 4th), I had it removed.
Since then the origional phlebitis viens appear to have collapsed. I can almost completely extend my arm.
I do have a frozen shoulder - perhaps as a result of having to ‘carry’ the arm awkwardly due to it’s limited flexibility.
However, I also have constant pain in the whole arm, that I don’t think is due to the frozen shoulder.
I have read through a few documents of recommended procedure for PICC line insertion, and they all mention the fact that only 2 attempts should be made.
This explains to me why I had 3 staff members (nurse, matron and finally sister!), have 2 attempts each. Was it their way of covering their a**es if something went wrong??? Why are only 2 attempts recommended? Is it because there is a greatly increased risk of permanent nerve damage?
All my enquiries at the hospital, Marsden, have been met with a shrug and ‘take pain killers’…
Well, I am in almost constant pain - the painkillers work for 20 mins if I’m lucky. I tend to take them before I exercise the arm to try and dull the increased pain exercise causes.
I am exhausted. I haven’t slept for more than 3 consecutive hours for more than 6 months.
Has anyone out there had a similar experience or is able to suggest anything?
thank you
emma
Sorry, Emma, I had no more than discomfort with my PICC, and none since it was removed. The lesson would seem to be to have them inserted earlier rather than later, but that doesn’t help you, does it?
I would suggest that you make an appointment with your GP. Physio might well help the shoulder. Are you doing the exercises from the booklet? I had a frozen shoulder about 10 years ago, so I sympathise. The physiotherapist also recommended putting ice packs on the painful area, both to reduce the pain and to promote healing. A bag of frozen peas is one convenient way, or those flexible blue things.
Your GP ought to be able to recommend you to someone for further treatment if phlebitis still seems to be a problem. I don’t know enough about the condition to know what can be done.
I hope you can get some help soon.
Cheryl
Thanks Cheryl
I think you’re right - I’d’ve been better off having the PICC inserted BEFORE the damage was done! I’m off to my GP’s 2moro, and have resolved no to put on the jolly-hockey-sticks-I’m-tough-as-old-boots act and not be afraid to sob my heart out!
I want to start piecing my life back together, and this agony is stopping me move forward.
My frozen shoulder really limited what I could do. I remember having to wait for someone to let me out of a building because I had some heavy things in my other arm and couldn’t raise the frozen one far enough to press a door release button. And of course I couldn’t carry the heavy stuff in that arm either. And that wasn’t nearly so painful as yours must be.
I’ve had to watch both my arms, because it’s too easy to go round with them held in one position and I found while the PICC was in place that it wasn’t comfortable to stretch that arm too much or do anything very strenuous with it. I mostly had problems with the dressing and the various plastic fastenings making the skin sore.
It’s definitely not time to be brave! I hope your GP can at least prescribe a better pain killer and get you on the way to something that will really improve the problem. Constant pain is a health problem in itself, after all.
Cheryl
HI Emma
I had pain in my lower left arm after the PICC was removed, and no grip either. I had several seesions of physio, which was basically strong massage to the area, did the exercises he recommended, and it got better. Sounds like yours is much worse than mine, but I do hope it can be as easily treated.
Regards
Kinden
x
That’s interesting! Yeah - any fine movements like threading a needle, is still impossible and my signature looks really unconvincing!
Last night I slept on my back with an extra pillow under my shoulder and arm - giving support and found I actually managed 3 hours consecutive sleep!!! yay!!!