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Question on Ports

cinnamonsmile
Posts: 1049
Joined: Dec 2010

Hi,

I have severe post mastectomy pain syndrome and LE. I have been getting Lidocaine IV infusions since 2011 for the pain. Since I finally got my official LE diagnoses all IVS need to be in the foot. 

I get Lidocaine IV infusions about every 2-3 months. My pain doctor is HORRIBLE at starting IVS. He constantly has to do 2-4 tries before he gets one to work. (He sucked when I let him do it in the left hand as well). I know that he is terrible because the anesthesiologist can start an IV in my foot with one try while I am dehydrated.

He is pushing me to get "Neurostimulation Therapy for Chronic Pain." It is basically wires that are inserted into my spine with a little box outside on the skin. I carry a remote control that turns the stimulation on or off, and controls the degree. Basically, it sends out tingles that are supposed to mask my pain.

The trial lasts 3-7 days,then if it I say it works, a permanent one is placed.

I am NOT crazy about another surgery and wires inserted in my spinal cord, tingles, and a box on my back, as well as having to keep track of a remote control. I am certainly not ok with people messing with my spine. I have horrible luck with medical procedures, esp. surgeries, so I am very weary.

I was thinking of a port instead. I don't know much about them, but have heard some women keep them for long times, right? I would like to suggest this to the pain doctor, but he is such a jerk that doesn't listen, is way to hyper, and is set in his ways.

  • Could you tell me how long you can keep a port?
  • Can you tell me what it is like to have one put in?
  • Can you tell me what the maintenance is like?
  • Can you tell me of complications?
  • Can you use a port for IV's?

Thank you so much for any help. I will try researching information as well, because I don't have an oncologist I can ask.

Cinnamonsmiles

 

 

missrenee's picture
missrenee
Posts: 2137
Joined: Apr 2010

I can answer some of your port questions--I had one for almost a year.  I think you can keep them in much longer if there are no complications.  I never had any complications with mine.  You are given general sedation to put them in, so no problem there.  Mine was a little sore for a few days (it was right under my clavicle), but then was okay.  There is basically no maintenance for you--I just tried to be careful not to bump it or hit it with anything because of the slight sensitivity there.  If it's not being using regularly, they recommend a nurse flushing it with saline at least once every 3 to 4 weeks to keep it free from clogs. 

 

As I said, I had no complications.  They can certainly use ports for IVS, blood draws and chemo.  I found my port to be a blessing so my arm vein didn't have to be used.

 

If you decide to go this route, I think you'll be happy with it.  Good luck.

Hugs, Renee

McMarty's picture
McMarty
Posts: 191
Joined: Nov 2012

I had a PowerPort put in in May of 2009.  It can be, and has been used for IV's and it can be used for CT and MRI contrast.  They will not use it for PET scan goo because they say the goo is sticky and could ruin the port.  Basically it has been great.  SO MUCH easier than IV starts.  It is almost impossible for anyone to put an IV in me so the port has been quite a blessing.  There are people unfamiliar with ports so I do go to the infusion lab and have it accessed before surgeries and proceedures. 

They say it must be maintenanced every 4 weeks but 6 weeks is just fine. 

The procedure was easy.  They didn't even put me to sleep.  Recovery was a little rough.  Mine is right under my right collarbone.  It is a sensitive area.  The first few days it is no fun to touch, dry with a towel or bump.  DONT PANIC !!   It gets WAY BETTER REAL FAST. 

Knowing what I know now, I would definitely get a port!

littleangel65
Posts: 46
Joined: Jan 2013

this is going to be a funny story to you and everyone reading this... I started getting my mammograms Nov. 2012, then when the discovered something, here we went, on my journey of biopsies, tests for one thing or another, then surgery, and 12 days in the hospital, getting poked and pinned everyday during my hospital stay, etc., anyway finally, they were getting me prepared for the placement of my port, well, they did knock me out, and I had to go to surgery for mine, but anyway, while they were prepping me for the surgery room, of course, here we go with yet another IV stick, this is where it kinda gets funny, but I was sitting there, trying to ignore the fact that I was having to get an IV in my hand (which I really do not prefer, but for whatever reasons couldn't do it in the arm area, and my right arm, well we can't use it anymore, because of my lymphdema), well, I started getting that clammy feeling, and I felt my heart beating alittel weird, and some dark spots before my eyes.  The nurse looked at me, and asked if I was needing to lay down, and then she did see me getting woozie, anyway, she hurried and worked on getting my IV, put some medicine in it, to help relax me, and then asked me I wanted my husband in the room, I was like yeah.  He came back there, thinking something bad had happened, by the time he got to the room I was feeling better, not to mention, embarassed, but I told, I have had it with being poked with needles, I've been dealing with it for like 5 1/2 months by this time, and by this time, my body said enough...

Anyway, that power port, was the best thing to happen to me, yes, it's not very comfortable at first, but just give yourself a few days, and you'll almost not notice it at all. 
I did buy the numbing cream, but honestly, I wouldn't recommend going out and purchasing it, I really can't tell a difference when I use it and not use it, just save your money on the cream.  but, do get it flushed every 6 weeks, but my nurse told me, that its no big deal if you don't get it flushed every 6 wks., but it will help keep it from getting clogged.

I hope my little story made  you smile and laugh somewhat...

Take Care, and "enjoy" your port, you'll appreciate in the long run.  :)

Linda

 

Rague
Posts: 3272
Joined: Aug 2009

My port was put on Aug. 25, 2009 - still there/will be til I hit the "Majik 5 yrs".  (I'm IBC so 'odds are it will be needed before then but not yet).

Hubby took mr to the hospital about 6 for 'check in'.  I don't remember exactly when I went to surgery but I went straight to discharge.  Surgeon talked to Hubby and he was told I'd be reaady to leave in about 2 hrs so he went to truck to do morning horse chores. Well he was still in the hospital parking lot when he got a call from discharge to come get me.  I was riding the next day and giving lessons - I did get out of mucking and heavy work for 2 weeks.

Maintenace- I go once a month for a flush.

"Complications - FOR ME - none.

I haven't needed IV's but it has been used with non-IBC surgeris.

Have you asked about a TENS Unit?  They are fantastiic for some pain control!  I got my first unit probably 15 yrs ago (Spinal ARTHRITIS).  Nothing is "implanted" in spine - patches are put ON SKIN, sort of like an EKG patch.  It's difficult for me to place them - so Hubby dose when needed.

Talk to your mediacl staff!  They hve acceesss to your records - we don't 'here'

Winyan - The Power Within

cinnamonsmile
Posts: 1049
Joined: Dec 2010

Rague, my pain is the result of nerves being knicked during my BMX with sentinel and axillary lymph node removal. My pain area is quite large: back of both upper arms, both armpits, bilateral under each armpit on the chest area and going around the back a little bit, and the entire chest from the bottom of the rib cage up to the clavicle.

Would a TENS Unit cover that large of area? I can't put anything taped to those areas, because I get more pain from taking it off. I have tried Lidocaine patches and it was searing, pain like I was being burned while taking them off.

My nerves are damaged and don't interpret sensations correctly. Everything is perceived as pain even though there is no pain present. I think putting Tens Units on the pain areas would only be perceived as pain and I think that is why the doctor wants the spinal implant.

Thanks for the information though. I have terrible arthritis in my left ankle where it was broked in multiple places in 1987. I may think about doing that for taht one day.

New Flower
Posts: 3938
Joined: Aug 2009

Any manipilation with spin make me nervous. If you have not tried topical Voltaren Gel, Please ask your doctor for prescription.

As far as port goes, I did have itand was happy with it, however my breast surgeoun recommended to remove it as soon as I finished invasive treatment and had good blood test results. Make sure your insurence approves it before you put it in. It is a very expensive procedure,so you need to know it upfront.

Hugs 

cinnamonsmile
Posts: 1049
Joined: Dec 2010

Thanks New Flower. I am just exploring my options at this point. Putting those wires up my spine makes me nervous, too. My BMX surgery was supposed to be routine and the side effects I ended up with were not.

One of the possible side effects of the spinal implant is nerve damage!!!! I just learned that while watching the informational DVD. They didn't put that info in the written booklet.

I am not sure the port will work. I guess there has to be a nurse who knows and is trained on how to access it. I doubt the pain clinic nurses are familiar enough with that.

I wish the pain doctor was better at putting IVs in difficult veins.

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