Port Pain :(

[surfgirl14]

Hey Guys. So since I got my chest port in on March 2nd I have been having pain on and off that just goes away and is quite mild. But tonight it seems more server like on a 1-10 scale and 10 being the worst I would have to say a 8. It is a burning, achy, and uncomfortable feeling that spreads to my shoulder. I know there is nothing really wrong becaue I just went to my pediatrican today and she looked at it plus I go to a infusion center every week and its flushes fine and everything no problems. Also have no fever, or redness. I just want the pain to go away I don't know how I am going to go to sleep feeling like this. I don't want to get it taking out either its amzing for infusions and saves my veins. Has anyone else experience pain like this with their port? Not sure if it matters but I have a Bard Power Port. Any comments or feedback would be helpful.

Thanks.

[corina]

Sorry you have to deal with this Kayla, hope it will get better soon!

[Dizzysillyak]

If it were me, I'd get a second opinion from a doctor NOT in your pediatrician's group or from anyone

previously associated with your port. These are

more likely to give you honest feedback about your port.

I don't have a port, but the rule of thumb on pain, is to consider it a sign from your body that something is

wrong.

Hope you feel better. .. D

[surfgirl14]

Thanks

[puppylove]

That sounds awful. I hope you feel better soon!

[tinkerbella]

I'm so sorry so your pain and worry. I HAVE THE BARD POWER PORT and it hurts me too. It didn't hurt at all at first. Then, Each week became so painful. I figured out the placement was in a fibro trigger point. Everyone agreed. The dr orded emla cream (lidocaine cream), to put on 30 mins with a clear dressing over it before the new needle is inserted. IT HAS CUT WAY DOWN ON THE PAIN of when the needle goes in and after. For me it's like one nerve sets off the next nerve and now I'm tense, because I'm expecting pain and maybe 3 needle tries. SO, I do tense my shoulders and get pain. Do you wear a back pack at all that may sit on the port?

For many weeks my port hurt to even touch it till we figured all of this out. Mine has also gotten clogged twice since being inserted. First time was 6 weeks old. Last time was just recently. I also found it depends on how much experience the iv nurse has. The bard port has to be gently held in place so the needle doesn't hit the wall of the port. That will make it flush, but still be painful. Are they getting a blood return?

I feel your pain ~ hang in there. When in pain, I agree talk to the doc and the iv team.

[surfgirl14]

Hey. sorry to hear that. I actually don't have pain with like acessing it and such (I have elma cream) ... but mines mostly when I am jus sitting around the house it will just start randomly hurting. The port works perfect no problems infusing, good blood return, etc. It just hurts mostly thats all. So far no problems.

[tinkerbella]

You are so sweet.... thanks..... I do understand what you mean though. Mine hurts too, but some weeks mine is hard to access ~ Lets think no pain ever

[surfgirl14]

aww well im sorry to hear that you have hard times acessing it some times :/ Hope that gets better I am actually seeing a childlife specialist i think tday or sometime next week for port education. I am going to ask her about the random pains and see if she has every had anyone experience that... and wat to do when I do experience tht. Cuz my pain like get so bad tht i want pain meds. Hope all is well.

Hugs.

[Elegiamore]

I've had my port for 18 mos. and no pain whatsoever. Except, of course, it gets sore from the needles as I get saline three times a week now. But no pain.

I don't want to worry you, but this is how infections start per my infusion center; usually right after the port is put in with pain. You may not have a temp for some time with an infection.

By chance, I met a guy in the infusion center last week that had NO FEVER until the port was flushed the 4th time - then he had pain and a temp of 104 within an hour and almost died; was in intensive care for two weeks. The infusion dr. STILL didn't figure out it was an infected port (again, infected since put in) and the 5th time he was flushed it started all over again. THEN they admitted it was the port. They pulled it out and he was fine in three days. After another ICU stay.

I would go back to the surgeon ASAP. Again, note that they MISSED the port as this guy's cause of infection and pain up front.

BellaMia, that is my experience: if you don't get a flush/draw, ask the nurse to pull the needle forward a tiny tad and you will get excellent flushing and blood drawing. They tried to get me to flush it also but it was baloney; just bad hospital infusion nurses.

What is port education? I mean, you just keep a bandaid on for 24 hours after entry, keep yourself clean and that's it. The nurses do it all. Would you tell us what you learn, please?

Good luck and I hope things improve soon. Sorry you are going through so much.

[tinkerbella]

Hi Elegiamore ~

I also have a friend who almost died from her port..that is why I fought tooth and nail and used up all my veins for 4 1/2 years till it was a must.

Is your port a bard power port?

Another thing is my insurance won't pay for the BARD needle sets. When I end up in the ER to unclog my port they use the bard needle set. When I questioned why I don't get this set, I got the insurance response. I was told why would they use anything else at the ER. So, I noticed that the bard needle infusion set was tiny compared to the Churchill medical systems Lifeguard Non-Coloring Safety Infusion Set 10 " Microbore Non DEHP Tubing Priming Volume approx. 0.3 ml.

It's a needle size 22 ga X 3/4". For a while they were using a needle that was the wrong size for me in the Churchill. they were using one that was a size too big and too long.

I agree it's all in the experience of the nurse. I sure should hate to be the one sticking the needing in someone's chest one a week.

I thought these brochures would be helpful for anyone who might be considering a port.

.http://www.bardacces...patientinfo.pdf

http://www.bardacces...t_Guide_web.pdf

The other day when I had a VQ scan the said I don't want to use your port because the material they inject likes to stick to the tubing, so they asked could they use my arm. You bet I said YES!

All in all I have the best team of iv nurses, doctors and support systems in place ~ But, I'm so darn tired from being sick and tired ~

Anyway, when in doubt go and get checked out. I was just @ the ER.

Best of Luck ~

Hugs,

BellaMia ~

[surfgirl14]

Hey. Umm well I have had my PORT in since March 2nd of this year and was fine up until a couple weeks ago. I just started having some pain. But it flushes fine, and I get great blood return. No feveres etc. I am pretty sure if it was a infection it would of showed itself by now. Ive had a pain a little over a month now. I am very tiny so my port is really visible under my skin ... they say the more skinnier you are the more pain youll have. sorry to hear about you guys experience with ports and what your freinds endured. I am not really scared by wat u said lol its fine, my doctors have reassured me and I have a great infusion team that would know if anything was wrong. I have asked about the pain and they said its fine .. I have good blood return, no problems acessing/infusing, and no fevers! Just annoying pain lol

[goodnuff77]

Potsgirl I had the powerport placed in January It was my second port. The first one I had was really small and I had some pain after the surgey but went away after the first month. With the powerport I still continue to have pain. But as of now it's pretty much gone. I've talked to the surgeon that put the power port in and he told me that the powerport is pretty large in comparison to most of the other ports used, and he said the long term pain was normal due to the size of it on the body trying to heal and get used to it. I use my port 3 times a day and now the port pain is pretty much gone. For me having the needle always in is what makes mine more sensitive. When certain things touch it (like seatbelt strap) it gets irritated. So I was told the pain is normal and I would ignore everyone sharing their friends dying stories. Seems weird to me that people are saying that to you. You have a object in your chest that your body needs to get used to. I think people need to stop sharing Death stories as if being sick wasn't bad enough people feel the need to scare you? The Dr's and nurses are trained what to look for with the port and infections. I hope your pain gets better.

[tinkerbella]

Kayla was wondering how long the power ports last...Mine has been x-rayed to check that it hadn't become broken from line.

If you search the internet for bard power port, you will get their questions and answers.

Here is a forum where they are talking about use and lifespan of ports.There's lots of information about the port on line.

https://www.inspire.com/groups/advanced-breast-cancer/discussion/should-i-get-a-port-central-venous-access/

Just search around and if you are are needing one read up and become educated about them.

I learned from the nurses in the IV infusion clinic before hand. I didn't know that young people can have them put in

other places other than there chest. I would have liked that option, as people stare all the time and being so hot I'm not

going to cover up. My dressings want to sweat off before the weekly dressing change.

Hope all is well.

[surfgirl14]

goodnuff- thanks that makes me feel so much better

[tinkerbella]

update Sept 2014, had port taken out, as there was a hole in my skin above my port that was not getting any smaller. Two weeks ago when they pulled the port, they put in a picc line. It looked like a smoldering infection going on. i was told that my power port only lasted 3 years anyway and was time to come out. one week later the hole won't heal and I'm bleeding. there is a hematoma in there.

: ( I had it checked again when i was having the picc dressing changed. My left arm is all swollen and hurts, and my left leg too. Ultra sound shows I now have a blood clot in my arm. I'm now taking blood thinner enjections twice a day. will address what to do on tuesday after the holiday about a new line. I was told not to fall. lol Guess I need to wrap up in bubble wrap. I asked the er doc, if he knew I was a fainter? He asked from what? I was told I was going to be admitted from my doctor. Oh well, maybe where I am is where I'm suppose to be right now.

i hope all is well with all my potsie friends.

love,

bellamia

[Becia]

So sorry for the troubles you're having Bella. I have a PICC line myself, and we have been pushing for a port as it's looking like this will be more long term than we originally thought. I've had a couple issues with my line, but so far, no clots or anything, and it flushes pretty easy (just hurts more, I think from placement). This thread is very helpful to me.

[corina]

So sorry Bellamia, sending good thoughts your way!

[tinkerbella]

Thanks for your support, the doc wants me to start using the picc and next week we will put in a new port on the other side. I have loved using the port, especially after I was trainned to do my own dressings. : )

[looneymom]

Hi Bella,

My son had a tunnel central port put in 3 weeks ago. So far so good. He is not having any trouble. I wish you the best with your new port.

[E Soskis]

I've had all three: tunneled catheter in my chest; infusaport; and PICC line. I much preferred the infusaport - it is under the skin and less likely to become infected. Mine lasted over 6 years without any problems. The tunneled catheter became infected and made me septic requiring removal of both the catheter and the infusaport - the PICC was in for over a month last winter and I'm still having phlebitis and problems from it. I work in healthcare and have noticed a trend of upper arm thromboses (clots) from PICC lines - I am not a fan of them. The absolute one central line I will never allow again is a femoral catheter. I became septic three times from them - awful type of IV access - very high rate of sepsis and infections. I would give anything to be able to have another infusaport - alas, I have a "necklace" graft now and will never be able to have any other chest IV lines again. Good luck with your port - take good care of it and it will last a long, long time!

[Shelby jean]

On 5/2/2012 at 8:57 PM, surfgirl14 said:

Hey Guys. So since I got my chest port in on March 2nd I have been having pain on and off that just goes away and is quite mild. But tonight it seems more server like on a 1-10 scale and 10 being the worst I would have to say a 8. It is a burning, achy, and uncomfortable feeling that spreads to my shoulder. I know there is nothing really wrong becaue I just went to my pediatrican today and she looked at it plus I go to a infusion center every week and its flushes fine and everything no problems. Also have no fever, or redness. I just want the pain to go away I don't know how I am going to go to sleep feeling like this. I don't want to get it taking out either its amzing for infusions and saves my veins. Has anyone else experience pain like this with their port? Not sure if it matters but I have a Bard Power Port. Any comments or feedback would be helpful.

Thanks.

I got mine put in less than a month ago for zollenger ellingsons disease and I'm already having pain where my port is. Trying too figure out why I'm having so much pain, mine goes up through my neck. Any ideas would be greatly appreciated. 

[Shelby jean]

I'm new to this and had a bard power port put in less than a month ago and having some pretty severe pain where the port,is going into my neck. I have told the doctors and they've pretty much blown me off. I have zollenger ellingsons disease hence  the reason for the port.  Any suggestions would be greatly appreciated!

[Guest ANCY]

I'm on my 3rd port, my current one was placed about 2 weeks ago. I still have pain and have found that the scar tissue from the previous ports makes it more tender and painful. For me the pain seems to come from scar tissue rubbing on the catheter, turning my head a certain way aggravates it. Ive had this all 3 times to some degree, seems the closer the entry point is to my clavicle the more it gets irritated. I also had trouble with my last port rotating and was twisting the catheter which caused some mild pain. That said do keep in mind that blood clots can form around the entry site and be painful so not sometging to trifle with. If you think there's a problem than you need to be seen.

[Shelby jean]

How do I know if there is a blood clot? Every time I ask a doctor about it the just blow me off like it's nothing