Severe pain after port insertion??

[kristihelene]

Got my port in this afternoon. My neck (way above port and IJ incisions) is KILLING me, and I also feel like a pulling sensation when trying to lift my head off the pillow. Is this normal?!

 

[jlm]

They might have been moving you around in weird awkward positions. I found I was quite sore afterwards. My right arm was pretty much useless since any movement hurt my port. Watch it for a few days and see if it gets better. I couldn't say if its normal or not.

 

[kristihelene]

Thanks! I was awake for the whole thing, and he like shook it hard back and forth to get it into place! I am just having so much pain to lift my head at all, it's crazy! They didn't rx pain meds but I have some percocets left over from last surgery and I've taken 2 since home and they didn't even touch the pain! I just don't know what to consider normal, that's all!! Definitely keeping my eye on it!

 

[jlm]

How's everything going? Did it let up? Pick up some emla cream before you have to needle in, I use it every time about 30-45 minutes before I do it. It's wonderful.

 

[Essieluv]

I don't have experience with a port, but my mom recently had one placed. For a few days after the procedure, she had large amounts of pain. But it did go away, and I imagine that is pretty normal, because it is quite an invasive procedure. Good luck with your healing!

 

[kristihelene]

Thank you all!! By Monday my pain had lessened to just a soreness! I just didn't see how that much pain could be normal since they sent me home with no pain meds!! I did get a rx for emla, but the surgeon laughed when I asked for it! Ugh!! Anyway this is a dumb question but where do they needle in? At the incision or above it? Because when I palpate it, it seems like my port is above the incisiob

 

[Naturelover]

They will place the needle in the center of the port reservoir. You will be sore until you are fully healed. Don't push using your arm that affects your port. Use it but don't over-do it. It took me months to be able to get back to using my arm. It may not hurt the first time the needle is put in due to the nerves being cut during surgery. You may even have a "numby" feeling at the port site. Eventually things do settle down and it's not so bad having the needle changed. PM me if you'd like. I'm in physical therapy and am finally being able to do more intense PT using my right arm. (Port is just below right clavicle bone.)

 

[jlm]

My incision is above my port. So I guess it's dependent on where they placed it. My port is circle I know some of them are different shapes so they'll feel for the edges of your port and needle in the middle. He shouldn't laugh lol, emlas a god send for me. I don't think I'dbe able to needle Iin myself without it. Here though you don't need a prescription.

 

[kristihelene]

Oh what id give to move to Canada!! In all seriousness, what's been your experience with crohn's meds and your universal health care system? And mine is a circle - I saw it - but it doesn't feel like it

 

[jlm]

Well, there's been a couple of rough patches. All in all I'm probably one of the lucky ones. ER waits can be a bit long, besides the times I present with infection symptoms those get you a fast past to the front of the line and 4 days on a ward with high doses of Vanco.

I've had 4.5 major surgeries (the .5 is for the kidney stone I had surgically removed lol). Tons of minor stuff like peg tubes and central lines. There's never really been a long wait and all hospital admissions have been quite good. I've lost track of the times I've been admitted, the longest one was 6 weeks though.

Medications and Tests are all covered. I pay a bit of a deductible on my meds, my private insurance through work covers 80% of it and Abbot picked up the rest of the tab since it was all humira mostly. I'm also on TPN, I have no idea what that stuff costs everything I need gets shipped to my house.

LIke I said, I'm probably one of the lucky ones in a way that everything I need its readily available for me. My GI is pretty good to me and she consults with all the other GI's in the city when she needs help. Like right now. I'm not feeling the greatest because of this stricture I have in my piloris. She's tried to Dialate it twice now and it just won't stay open. We're going to try a thrid time with a different GI. In the mean time she's going to try and get a compassionate release of Stelara from the company and refer me to a GI surgeon just in case.

Sorry long winded. There are for sure horror stories with public health but I've been pretty fortunate, or maybe it's just I'm really sick lol. Who knows.

 

[Naturelover]

I actually have three incisions. One runs though the middle of the port, one is above the port and one is below the port. The reason for so many incision sites is because I had one port in that became infected and had to be removed. (Incision #1). Next was the incision to put a new port in. (Incision #2). Finally, I had to have a port reservoir revision since the location of the new port wasn't working properly. (Incision #3). When a port has to be replaced due to infection, they take out the port and put you on IV antibiotics or oral antibiotics for a week or so, or longer, until blood work comes back indicating infection has cleared up. Maybe that's why it took me longer to heal and be able to use my right arm. I'm allergic to Vanco so they had to do other IV antibiotics instead.

 

[kristihelene]

Jlm - not long winded, just detailed!! Thank you! I truly have been considering becoming an ex-pat for a whole variety of reasons, but Canada has always intrigued me as has their health system. It certainly can't be worse than what's happened here with "the affordable care act" aka ObamaCare!!

 

[kristihelene]

Naturelover - I thanks for the info!! After feeling around the port, i guess my incision is near the bottom of the circle, parallel to ground (plus the small incision at the IJ vein). It's all still so sensitive and it's been a week!

Also this is to all of you - from my resections I know I develop keloid scars and extremely problematic adhesions! If any of you have had adhesions from your IBD surgeries, were those also a problem at the port site??

 

[Naturelover]

Jlm - not long winded, just detailed!! Thank you! I truly have been considering becoming an ex-pat for a whole variety of reasons, but Canada has always intrigued me as has their health system. It certainly can't be worse than what's happened here with "the affordable care act" aka ObamaCare!!

Kristihelene, I do believe you meant "UNAFFORDABLE Care Act" aka ObamaCrap.

There are a few good points to the Unaffordable Care Act, no one can ever be turned down for health insurance due to illness and the lifetime limit has been banished.

 

[kristihelene]

Lol yes yes and yes! I'm torn because it's awesome to have to cover pre existing conditions and obviously I that may benefit me some day should my husband ever lose his group health insurance! However, it's KILLLLLING us financially. My husband works for a fairly large company, and out premium went from $250/ mo to $600/ mo, and no deductible to $3500 deductible and then an additional out of pocket max of $1500. So at the first remicade of the year, I owed $5000. Because you know, we have that kinda cash just hanging around.... So so frustrating!!

 

[Naturelover]

You can bet the insurance companies must be making a profit. Your out of pocket cost are less than my out of pocket cost. Jealous!

 

[Naturelover]

P.S. Obviously we must have $5,000.00 or more to kick around or our lovely gov't wouldn't have asked us to fork it over.:ybatty:

 

[kristihelene]

Really?? You pay more than $5000 + $7200 (tired... What's that like 12,200?) premiums per year for a couple? Then how does the universal health care thing work? So confused lol

 

[kristihelene]

Hahaha id like to know where they think the people who have to use that whole deductible/out of pocket (ie those of us with chronic illness) will come up with that?? From the FT job I can't work because of my illness? From my savings I never started because I couldn't work FT? Lol grrrrr

 

[Naturelover]

I have family coverage and no one family member is allowed to make up the whole deductible or catastrophic limit. Better hope someone else in the family runs up a few medical bills. HUH!?!?!?!
Where's the logic in that? One hospital stay is enough to meet or almost meet all the various limits.

 

[kristihelene]

Yuck!! That's no good!! Hmm maybe the grass isn't always greener lol

 

[Naturelover]

Yep! You just might find weeds instead of grass!:ylol:

 

[jlm]

That all sounds really awful. My deductible for pharmacare (goverment run program for prescriptions) comes around april 1. My deductible is about 1000-1200 which is based on what I made 2 years prior. My private insurance covers 80% and I was left with with abou 250 when I filled my Humira prescription. This amount was even harder to cover and it was being reimbursed back to me from the drug company once I paid it. I couldn't imagine having to pay what you guys are. What would a gastroscope cost? I've had 2 in the last month and a 3 is booked for next week.

 

[kristihelene]

I have no idea what it costs because I always hit my deductible & o-o-p-m in the first few weeks of the year. I'll find an explanation of benefits and let ya know!! But I know my remicade is over $11,000 a treatment so over $100,000 a year just for remicade lol. I'm quite sure my insurance hates me!

 

[jlm]

How many viles of remicade is that? Oh wait that includes the infusions as well right? THe most i've ever paid for remicade was about abou 7500 I think for 6 viles. humira is about 3500 for 4 pens.

 

[kristihelene]

Ya they don't break it down by medicine only - that's medicine and infusion ... Can't believe humira is that much too!