Port Insertion Next Week

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kane744
kane744 Member Posts: 461
edited June 2014 in Lymphedema

Here we go, another LE risk. My port (absolutely, positively, necessary) will be surgically implanted next week. In the morning, am visiting me LE therapist who will drain and wrap both arms (a sure way to keep docs and nurses from doing anything they shouldn't), then go to the outpatient surgical center for the deed. Again, I will insist on IV in foot, BP in leg. BP in leg hurts like crazy, by the way so I went on line to see how it should be taken.  On the thigh, dummies, not the calf), so expect to do more medical profession training.

Some questions. Am I at LE risk every time port is accessed? Will continuing with MLD help prevent me from developing in non-LE arm? How do I do MLD with port in place?  

Last question. After BMX has anyone experienced myofascial restriction? Have it and everyone on my med team is aware of it because of my big, fat, mouth. I go do two different LE therapists. One LANA, the other Chikley. LANA one says we must wait for further treatment till I heal. Chikley is using gentle method and showed me how to break it down. After her treatment yesterday, it softened a bit but pretty hard today.  Comments anyone?

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  • kira66715
    kira66715 Member Posts: 4,681
    edited July 2012

    Kane, Binney is away for a few days, I'll try and answer.

    Leg blood pressure--a lot of people find the thigh blood pressure painful, so ankle blood pressure is used, they're essentially accurate and equivalent--I find the huge thigh cuff unwieldy at best

    I don't think you have a risk of LE every time the port is accessed, other than a risk of infection with the skin puncture--have them be meticulous.

    While no study has ever "proven" MLD will prevent LE, the equivalent study was the Nicole Stout study where she slapped jobst sleeves and gauntlets on all women, post op with a 3% increase in volume--no control group--and most didn't progress. Since MLD enhances lymphatic transport, it sure can't hurt.

    I've treated patients with BMX and the scars can be really adherent. Especially on the side that got radiation before. I'd go with your Chikley woman's gentle scar release. Scars obstruct lymph flow, and are painful and anything you can do to relieve them is good, IMO.

    Scars go through a lot of "remodeling" for several months, but if they're already tethering you, I sure would intervene early before they're stuck down. Just my opinion.

    Kane, hang in there, and Binney will be back in a few days.

    Kira

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  • kane744
    kane744 Member Posts: 461
    edited July 2012

    Glad to know about the thigh blood pressure before shooting off my mouth!! I'll tell you though, when they had it on my calf, I thought I'd go through the roof. I had a feeling about the more gentle being the way to go. Somehow, it just made more sense. Both therapists told me my lymph are working overtime, which I can believe due to their recent assault. Anyway, I will try to be patient and deal with these things as they crop out, but I really am ready to have fun now, thank you very much!! I miss being with the horses.

    Thanks, Kira. 

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  • BoobsinaBox
    BoobsinaBox Member Posts: 550
    edited July 2012

    I am bilateral, and have my BP done in the calf. It only hurts with automatic inflation. If they do it manually, and if they don't over-pump it, (I have low BP generally), it is not painful. Good luck getting this understood and taken care of!



    Dawn

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  • Anonymous
    Anonymous Member Posts: 1,376
    edited July 2012
    Kane, I think I've touched on this in another thread, but gentle myofascial release is so helpful. Adhesions, especially new ones, do not require any brutal or massive manipulation. To the contrary, and in light of LE situation, the therapist will position you in a manner to assist in accessing the restricted area. Then with flat hands (absolutely no digging of fingers) the skin is moved slowly and gently in direction that finds where adhesion begins. Sitting there with hands stretching, placing light tension on area of restriction and urging further movement for about 90 sec, will eventually allow the area to release. There is no need to be (and shouldn't this soon after surgery) poked or deeply pressed on. Wiith a little patience and time of holding the position, the collagen (which is what comprises the fascia) will let go. The body wants to resume its natural position, so don't let anyone beat on you and damage any internal healing that is taking place still. That is especially true for the lymphatics area. Do NOT let anyone press against the side of your chest in the drainage pathway in order to get a grip to hold the skin taught in the front over the breast area. There is more than one way to accomplish the task. The same goes for allowing the therapist to stretch the arm high above your head while you are laying flat until there is tension in the trunk, as the lymphatics are still healing. Same goes for protecting the axilla area.




    I do not mean to worry you, but there are many ways to access the restricted areas without pressing or stretching delicate areas of the lymphatics or those that are healing. You are still early enough after surgery that you are not going to have the window slammed shut on working with these new restrictions. Protect yourself, listen to your body, and know when to ask to avoid certain areas. Having said all that, I think myofascial release is the most wonderful treatment for promoting healing in the body. Issues I had long before BC with my back have gone by the wayside in the process. These changes have been for the long term. With the mastectomy/deconstruction surgeries, I think stretching will always be required to keep posture and range of motion good. The reason yoga is helpful (as long as positions don't stress LE) is very similar to myofascial release. Holding a stretch gently over a period of time will let muscles and skin relax and release.
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  • kane744
    kane744 Member Posts: 461
    edited July 2012

    Tina337! Thank you!! This is exactly what my Chikley LE therapist said to me on Monday (crap, was that yesterday!) and which made so much sense. In defense of my other PT, she did say she couldn't begin the myofascial release treatment until I have healed further. But the Chikley therapist (and I never know if I'm spelling that correctly) has really gained my trust and respect over the past two years. She's the one I pay out of pocket to help support my efforts to keep LE under control (I go to her every three weeks in winter; every week in summer). And when I had a treatment with her on Monday, I could so feel the difference. Then she placed my hand into the proper position, put hers on top and showed me how to gently move it myself. I go back Friday. I left her feeling confident and physically so much better, but don't quite "feel" when it's releasing. However, I think my husband and I will just have to bite the bullet and pay for 2X a week therapy with my Chicklet because she gets the results I need.

    I know I need patience but this is my fifth cancer experience, twice with breast cancer, and I still feel healthy (until chemo) and anxious to enjoy my life at 68 years old!  Have been thinking about yoga. In fact our Senior Center offers classes but I've been reluctant to go there cause it's filled with old people (lol).

    Thanks again. I feel that this myofascial thing is possible for me to overcome and really just a mini hurdle if I listen to my body, as you say.

    And Boobs in a Box, thanks for your tip of manual BP readings. I've hated those auto machines even before I had LE!! I've been so outspoken this time around that I will simply add this to the list of my medical requirements. 

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  • Binney4
    Binney4 Member Posts: 8,609
    edited July 2012

    Oh, Kane, so glad you'll be getting a port!Smile It's a real help with chemo and will ease the way for you. I agree with Kira--make 'em use their best care in accessing it. I have great confidence that they're not going to get any shoddy precautions past you!Kiss

    BP on the thigh is more uncomfortable than on the calf, so have them do it manually or turn the stupid thing down (can they do that?Undecided). Note how smoothly I say "uncomfortable," when you know full well what I mean.Frown

    Hooray for your therapist wrapping you for your port insertion! Just as an alert, the folks who check you in and have to put a bracelet on your arm can get pretty flustered, since they don't fit around our bulky wraps. Smile patiently and tell them to use two of them connected to each other, or use your ankle.

    I sure agree with you trusting the Chickey therapist on this one, though the other, taking a more cautious approach, sounds caring as well. Either will work, but I'd go with NOW rather than later. Most of us have trouble finding one really good therapist, and you've landed two--brava! You're in good hands.Cool

    Huge, gentle hugs,
    Binney

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  • kane744
    kane744 Member Posts: 461
    edited July 2012

    Thanks, Binney. I try to always be firm but nice and so grateful for their understanding just so they don't "pee in my soup" when I'm out of it. And re the port, at the cancer center where I go for chemo they are so careful about everything. But last time, I hadn't yet developed LE and that's why I was wondering. 

    I have one more question for you, who has been through EVERYTHING it seems. In the late afternoon, I get this burning sensation across my chest. Like I'd been laying out in the sun all day, then used a scrubber to wash away the baby oil. I can hardly stand to have anything touching that area. Happens each day about the same time. I told my bs about it and he said to take two ibuprofen and if it wasn't working, tell him when I come in for port installation and we'll discuss other possible meds. I'm inclined to think this is related to surgery and will get better with "tincture of time." Have you ever heard of this particular complaint? I've tried to find threads relating to this but most involved months after surgery and mine is only three weeks.

    I've been leaning to my Chickley therapist for awhile now. I went to the other to be measured prior to surgery and for a few treatments mainly because insurance pays for that but not Chickley. We're retired, with everything that entails, so we try to watch our expenses. Last night my dh and I talked about it and until this myofascial thing is resolved, we will cut back elsewhere and I'll go to her twice a week for awhile. There's nothing like the full understanding, help, and support of a dh.

    Yikes, gotta run. We're having a huge thunderstorm. Hooray, we so need the rain!

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  • Binney4
    Binney4 Member Posts: 8,609
    edited July 2012

    Kane, I'm inclined to agree with you about the afternoon "burning" being related to the surgery. You might try lying down and deliberately relaxing/deep breathing for a bit before it hits and see if that helps ease it. I'd guess the ibuprofen might not help it much if it's nerve-related, but time will. (Patience is not my strong suit--hope it's yours!UndecidedTongue out) I sometimes found a bit of Ativan went further than pain meds for easing treatment pain, probably because it helps reduce the stress and tightness that makes pain worse. Just a thought.

    Yep, a dh who's understanding and supportive in an incredible gift, and I'm grateful for mine every day. They give us a place to stand, no matter what. We're rich women!Smile

    Hugs,
    Binney

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