Post-Picc Arm Pain

A

apithano

New member
I had a picc line in my left arm from June 10 to August 22 of this year. During that time, I had pain in that arm (inside of the upper arm and armpit), but was assured by my doctor that it was first from the insertion and then from overuse and to rest it. The pain ranged from a dull ache to a sharp pain (particularly in the armpit area) and would occasionally radiate down the left side of my chest.

Since the picc has been removed, the pain has continued to occur, more so when I use the arm, but sometimes happens for no reason. I'm also having aching pain in the left shouder and left side of my neck, as well as having areas of reduced sensitivity. The arm is not swollen or discolored and there doesn't seem to be any loss of mobility or strength.

I've had heart studies done and, while they did fine some anomalies, they said everything's fine and the anomalies are normal variants. So that's not the issue.

It took 4 tries for them to insert the picc because it kept "catching" on something and I'm wondering if they didn't manage to damage something in there.

I've talked to my doctor about the residual pain and she suggested it might be "phantom pain" from having the picc and didn't care to pursue the subject further. I don't buy into that as the inside of my arm and armpit are tender to the touch.

Does anyone have any suggestions as to what this might be or how to go about getting it diagnosed since my dr seems to think it's all in my head?

Thanks in advance. :)



P.S. - Not trying to cloud the issue here and don't even know if it's applicable, but someone on another board mentioned thoracic outlet syndrome. Any idea what kind of doc can diagnose this? Does what I have sound like this?
 
I feel through all of your posts that you probably have a phlebitis, which may take many months to heal. Inflammation and scarring takes along time to heal. Since you ruled out any type of cardiac issues, I feel you should try Motrin for inflammation and warm compresses. If you really feel like you want further invasive studies then you should see a vascular surgeon. Personnally, I feel time is on side since it doesn't appear to be infected, just irritated, and it hasn't been long since you had that "foreign body" resting inside your vein, inserting chemicals into your body. Give it some time.
Best regards, gogirl
 
The arm's better today although I'm still getting random periods of "OW!" in the arm and neck.

Feelbad,
Thanks for your heartfelt reply. :)

I have a good neuro. Haven't brought this up to him yet tho. Figured he was already working on enough issues with me. LOL! I have an appt with him on the 18th and will mention it then.

There aren't any areas of actual numbness, although the underside of my forearm has marked loss of sensation. There's also loss of sensation along the back of my neck, over my shoulder, and down across my clavicle. Now whether that's part of the other neuro problems going on or as a result of possible nerve damage from the picc insertion, I don't know. I also have loss of sensation on both sides of my face, running in a strip from above my hairline, in front of my ears, and along part of my lower jaw. The facial loss of sensation is definitely from my other neuro issues.

It really does miff me that it was immediately dismissed as phantom pain, even though phantom pain is a legitimate neuro problem. That should have been a decision made after at least a cursory exam (she didn't even look at my arm) and maybe an ultrasound to rule out anything else going on.

Unfortunately, I'm sort of stuck with this doc, at least for now. Their practice is obscenely busy and they're simply overwhelmed with the number of patients. In order to combat being lost in the shuffle, I've had to, more or less, take charge of my own healthcare and see specialists as I've seen the need to. Fortunately, my insurance doesn't require referrals for in-network specialists.

Even with this marked disadvantage, they're still one of the best lyme practices on the east coast and it'd simply cost far too much out-of-pocket to see another one. Most good lyme docs don't take insurance and are outrageously expensive. My neuro is lyme-friendly (a rarity, believe me) and he screens all of his patients for lyme during their differential diagnoses. I have considered talking to him about finding the name of another doc who he thinks may be able to help me and who also takes our insurance. Might bring this up on the 18th as well.


Gogirl517,
You're probably right about the phlebitis, although I can't help worrying that they screwed something up in there.

Can't take motrin because of my liver. Am taking the odd dose of aspirin when the pain gets really bad, mostly to make me feel like I'm doing *something* for it - doesn't really help much tho. I think what I need at this point is an ultrasound, just to make sure there isn't something else going on. At least that'd make me feel a little better about the whole thing and settle some of the anxiety I'm having about it. Thanks for your reply. :)
 
just what other neuro issue do you have that you are already seeing a neuro for? you are very right about them running an US with that doppler tool on the vessels there. its just another way to test and rule out. what other testing have you had done that you mentioned inthe other post? considering all of your symptoms and the loss of sensation too,you really do need an EMG to check for nerve flow imarment and also that c and t spine MRI just to see whats up in that area. the c spine,when there are issues CAN cause facial problems/symptoms too,believe me,i deal with that one myself. it IS possible.

just getting the basic testing done will either rule something in or out and thats how any real Dx is made ya know? it really does sound like a nerve is most definitely damaged or the flow impaired in some way or the sensation loss would simply not be present. that one symptoms tells alot about the nerve situation alone. you just need to find where it is being affected. hopefuklly your neuro will just do all the right things for you to get that Dx of what is casueing this. just continue to be your own advocate. thats the best thing you can do for yourself. had to take charge of all my many medical issues myself too just to get all my many needs met from different types of specialists i have to see now. getting copies of all your own test results and also get all of your own medical records from every single doc you have seen also REALLY really helps to stay on top of everythig too.just reading thru the docs clinic notes that get made after every visit with them really gives you a much clearer understanding of whether or not your doc really is getting what you feel are the most important problems. these DO help you alot or believe me,i would not go thru getting all mine twice a year,and the testing results asap once they have been done on me. then you just keep the most pertinent stuff in an expandable type of folder that you can bring to every doc appt. it will just have all your most current testing info and the highlights,ya know? and inthe event you should ever have to go to the ER for something,you just grab that folder and take it with you. all your most important stuff is right there for the docs to see. it also gives them a baseline to work from too. just some helpful suggestions that have really helped me out. please continue to keep us posted onall things. hopefully you wont have to wait to long to find out the reason for this. good luck. FB
 
Measured the arm today. No swelling. At least that's a good thing.

Noticed that the area that hurts is hard. I can actually feel the vein in there. Not sure I should be able to do that.

Fibrin sheath? Phlebitis? Thrombosis?
 
Feelbad,
The main reason I'm seeing the neuro is for sleep problems. The doc suspects parasomnias, possible apnea, and I've been dealing with insomnia on and off for years now.

We don't know if I've been having seizures in my sleep or not and are waiting for the results of a sleep study to come back. Had a polysomnogram and MSLT done a few weeks ago. Takes 6 weeks to get the detailed results.

Other neuro issues are parasthesias in all 4 extremities, olfactory hallucinations, a tremor in my right hand, mild right-sided weakness and loss of coordination, occasionally leaning to my left, periodic bouts of bells palsy, and other assorted minor, yet annoying, problems. This is on top of the cognitive decline, brain fog, memory problems, etc. Most of what I'm dealing with is from late-stage lyme disease, although lyme can cause secondary issues such as disk problems.

I had a brain MRI done back in March. Everything was normal except for a very small non-specific gliosis near the basal ganglia. Both the radiologist and the neuro figure it's non-symptomatic and could be from the lyme, B12 deficiency and/or migraines - all of which I either have or have had. I've also had an independent consultation from one of the country's top neurosurgeons and he didn't find anything noteworthy in there (thank goodness!).

I wouldn't mind getting another MRI again in a few months to see if anything's changed. Most of my major neuro symptoms (tremor, right-sided issues, possible night seizures) appeared *after* the MRI was done.

I've had more head, upper torso, and abdomen CTs than I can count. All normal. EEG was normal too.

And yes, I get copies of all my test results. Even get CDs of my imaging studies. Haven't gotten copies of dr's notes tho. Would probably be useful, if not enlightening. Will have to start working on that. I keep everything in a 3-ring binder. It's my "life in a book" or at least the last 18 months of it. I also keep a list of all my current medications in the front so, in case of emergency, that info's available.

Thanks again for all your help! :)
 
I have had several PICC lines and never had any pain like you are describing...I feel your frustration,if you can't get any answers and it's really bothersome maybe a trip to the ER??? Before I got there maybe try applying a ice pack or a heating pad to see which one offers some relief....Sad thing is when your Dr. WON't listen and you have to make a trip to the ER,but the ER will run tests on the spot...Let us know what the results are...OH yeah what kind of medicines were run thru your PICC line? That DOES matter to!!!! G
 
Nyxie63

You might want to try making an appointment with a neurologist. You could have sustain some type of nerve damage. Your symptoms sound like your pain is running along a nerve route.

Keep us informed of you progress and I would think of locating a new primary care. A doctor who refusing to pursue a problem further is certainly not the type of doctor I would want treating me.
 
Hi G! :)

I've been trying to avoid the whole ER thing. Been there too many times in the past year. Might be my only recourse tho. *sigh*

A hot water bottle offers some relief and then it doesn't. The heat feels good but doesn't do anything for the pain. Ice packs don't sound good but I'll give it a go and see if it helps any.

I was given Rocephin (antibiotic) through the picc, as well as the usual saline and heparin flushes. Halfway through treatment, we discovered I was allergic to the heparin (through yet another visit to the ER), which probably didn't help things any. No wonder I hadn't felt well since starting the treatment. And I thought it was side effects of the antibiotic. Oh well. Discontinued the heparin and felt considerably better for the rest of the treatment.

I'm leaning toward them doing some kind of damage in there during the insertion. Like I said in my first post, there were 4 insertion attempts. Each attempt was at a different spot. The guidewire even crumpled one time. That one hurt!

Thanks for your reply and will keep you posted. :)
 
was the person who inserted your picc a total idiot? they normally use different technology when inserting a picc line vs just starting a regular type of IV. it should not have taken that many attempts at all. i really am thinking nerve damage. any one of those misses could have damaged a nerve there. are you feeling any actual numbness or tingling in that arm? you 'could' possibly have one issue up in the c spine area that is also exascerbating the arm issue too. anything is indeed possible believe me. they need to start ruling things out for you with a bit of testing. they could do a simple MRI on the c spine and upper T,and also doing an EMG on that arm itself would generally show any actual nerve flow impairment and or possible damage to. but you also need to have a doc who is willing to go for this too.if you do not feel that your doc is taking your pain and other symptoms seriously,go seek out someone who will. you just will not get anywhwere with a doc who just does not appear to care about a patients real pain and need to find the reasons. been there done that one to death myself.

you simply NEED a doc that is willing to look for answers first before anything will really get accomplished. finding another doc or trying to get your current one to really see your absolute need here to just find out what is casuing this would be the way to go. you just need some testing done. possibly getting a referral to a good neuro would help tons right now. they just know what types of testing is needed to find answers for your symptoms. that picc could have been hitting a nerve the entire time it was inserted,depending upon how it was lying within that vein,and any actual pressure that could have been compromising a nerve up there. but with so many attempts at just inserting this in you,anything could have become damaged too ya know? right now,you just need a doc or neuro who is willing to work for you to find answers. getting the basic testing done will either rule things in or out for you and you go from there.

i do wish you luck with this and hope you can find out just exactly what the heck occured and what is creating this now. you also need someone to treat the pain properly too. if this is from nerve damage,in most cases,it wont respond really well to any narcotics. you kind of have to go out of the box a bit in order to really treat nerve related pain appropriately. it wouldn't hurt to see about getting a referral to a good pain management doc as well. believe me, they DO know how to treat all types of pain in the very best ways. i am grateful to have my pain doc helping me with my off the wall types of pain. please keep us posted on how things are going. start pushing your doc for help with this,afterall,it is their job. FB
 
shisslak,
I'm seeing my neuro on the 18th and will bring this up to him then. Since the picc was inserted into the brachial vein, I have some concern about damage to the brachial plexus. In the meantime, I think I'm going to push for an ultrasound, just to confirm or rule out any vascular issues like scar tissue, phlebitis, or something else. I may be looking at more than one problem here.

Admittedly, I'm not very happy with my doc. I haven't been for awhile. Until I can find another lyme-literate doc who'll treat my lyme and co-infections and is affordable, I'm pretty much stuck with this one for the time being.

Thanks for your reply. :)
 
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