Delay in treatment?

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itfinallyhitme
itfinallyhitme Member Posts: 123
edited June 2017 in Lymphedema

Hi all,


I'm just wondering how bad a delay in treatment is. I'm really kind of frustrated.


My surgery (BMX) was 4/20, so I'm 6 weeks out now. My last follow up was a week and a half ago, they wanted to get drains out and give it one more week to see if problems resolved. They didn't, so they gave me a referral to PT. I asked to be sent to someone with LE experience, since I'd had a weird heaviness in my arms for several days before that. So the heaviness started at about 4 weeks. I'm still pretty limited in my range of motion on the other arm - I can get it raised about shoulder height (elbow) but no higher.

I had an appt this week, some delay because of holiday. Then my other arm swelled up a bit and has been numb and painful. It's not huge, but it has gotten a crease in my upper arm from puffing out a bit. Clothing no longer fits on my upper arm.My fingers are normal. The skin looks tight and shiny on my arm sometimes, and I can't see the veins like I can in the other arm.


I found out the appt was only for PT. They don't think my coverage will pay for 2 evals. And it's going to be 6/20 before I can get in to see a LE PT. They have an LE OT but say my coverage won't pay for that. So unless someone cancels, or I can find someone else, that's where I'm at right now. The PT appt was cancelled too.


So I'm looking at PT delayed until 2 months post-op, and meanwhile I have no instructions from my surgeon as to restrictions (he says none, but from what I've read that seems foolish). I don't know if the delay in PT will cause damage or limit my recovery? I just want to be functional.


But a 5-week or so delay in treating LE seems like a terrible idea. I do the wall-walking - I got instructions from someone online for that. It sometimes seems a little better when I wake up. Sometimes not. It's not getting much worse.


Is this all typical? Should I worry? I admit I'm tired of the pain. Both arms feel like a sleeve is twisted tight around them, cutting off my circulation. I hate that sensation. But of course it's nothing, so I can't ever get rid of it. And I'm tired of not being able to reach my clothes hanging in my closet, or the dishes in the cupboard. I've improved a lot (on one arm) but not there yet. I can be patient, but I'm worried about damage being done because of the delay, which is why I'm posting in the LE forum.


I am planning to start calling other LE PTs tomorrow.

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Comments

  • ChiSandy
    ChiSandy Member Posts: 12,133
    edited June 2017

    That is too long a delay. LE progresses if untreated. Go to stepupspeakout.org for resources for assistance in treatment. There are YouTube videos on how to do manual lymphatic drainage self-massage—at least do that. Wall-walking is only for flexibility and perhaps breaking up cords, which it doesn’t sound like you have. Your symptoms sound like textbook Stage 1 LE. Get on the horn to your surgeon and demand to be pushed to the head of the line.

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  • tessu
    tessu Member Posts: 1,564
    edited June 2017

    Definitely check out

    www.stepup-speakout.org

    for lymfedemainfo and care instructions! Be sure to include the "-" when you look for the site.

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  • ksusan
    ksusan Member Posts: 4,505
    edited June 2017

    Ask why your insurance won't cover treatment for a worsening side effect of surgery.

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  • gb2115
    gb2115 Member Posts: 1,894
    edited June 2017

    And if insurance won't cover it, what would your out-of-pocket be to see the OT? It might be worth it to just pay the money for an eval to get some help and not let that get worse.

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  • itfinallyhitme
    itfinallyhitme Member Posts: 123
    edited June 2017

    Thanks, everyone.


    I spent almost the whole night reading the Step up speak out website. I planned to call the person overseeing my coverage to see if anything can be done. And the delay is because the person the referral went to can't get me in. She's busy, and will also be out on vacation in the intervening weeks. If I can find someone else who will see me, it shouldn't be so long.


    If I get a tax refund in, I might be able to self-pay. But otherwise there is no money - three surgeries, radiation, other procedures, and a completely crashed immune system have resulted in very little work over the past year.


    I very much appreciate the info. There might be a TINY improvement from pumping my fist many many times through the night, and elevating on a pillow has definitely made it feel better if nothing else. I also have access to swimming frequently, (was just released to start) and that pretty much means leg exercise and not real arm strokes, so I'm on the right track with a few things. I'm already an abdominal breather (funny, I always thought I was the one breathing wrong, but never trained myself to chest-breathe). I think I'm going to get someone to take pics JUST IN CASE there is a delay and any improvement, keep up with these measures. I'm not thinking I can or should do any massage on my own. Mild compression sounds tempting,me, given the way it feels, but I will refrain from that too. That site isimmensely helpful. And it's about opening time here, so I'll get on the phone and hope I can get help sooner.

    ETA: so drainage CAN be done with YouTube videos? My head is swimming. I thought I was reading NOT to try. I may do it after all then, whatever is most advisable

    THANK YOU ALL so much

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  • itfinallyhitme
    itfinallyhitme Member Posts: 123
    edited June 2017

    Is there any reason to avoid light exercise of the triceps while I'm trying to be seen? Maybe some very light work with elastic bands or weights of only a few pounds, and repetitive exercise? Of course, very limited reps at first, and maybe increasing the number slowly?

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  • MinusTwo
    MinusTwo Member Posts: 16,634
    edited June 2017

    I would not try to learn MLD from YouTube. It's very important that you be seen by a trained LE PT to get the correct diagnosis & training & recommendations for compression. Hope you can get in to see someone soon.

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  • itfinallyhitme
    itfinallyhitme Member Posts: 123
    edited June 2017

    Thank you! I'm very much hoping I can get in somewhere sooner, and working on that. :)

    And I have heard mixed advice, so I have concerns about the node-stimulating massage, etc., especially. Oh, and proper compression sounds like it might feel good, but I am absolutely NOT going to do anything like that - I'm making sure my armholes are very large and nothing is putting any pressure at all on the arms


    I'm mostly wondering if I can do things like triceps extensions - holding arms straight up overhead, then bending the elbow so the hand goes toward the back, stretching the triceps, and raising the arm (maybe with a pound).


    It feels so much like I NEED to exercise it, but I can't do anything heavy. It may be too that feeling of constrction I feel around both arms, even though nothing is there, it's kind of driving me crazy that I need to be moving it more than I am. I've been doing a few basic things, like overhead fist pumps. It seems a few days of doing that makes me feel a strong need to do just a tiny bit more, but I don't know if that is typically allowed or advisable with possible LE.

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  • MinusTwo
    MinusTwo Member Posts: 16,634
    edited June 2017

    ItFinallyHit - if it were me, I would not start exercise until I have a formal diagnosis and you learn how to do MLD from a professional and the proper way & time to wear sleeves & gloves. In any case it certainly would not be tricep exercises.

    Please go ahead and fill in your diagnosis & treatment to date on My Profile so we can more accurately look at your questions. I think you're only 6 weeks posts surgery? So here's out quote: Just because you can doesn't mean you should.

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  • MinusTwo
    MinusTwo Member Posts: 16,634
    edited June 2017

    This is a LONG thread, but very active. I would suggest you post your questions here after you fill in your profile. There are several women who can give you pros & cons & tips.

    https://community.breastcancer.org/forum/64/topics...


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  • Binney4
    Binney4 Member Posts: 8,609
    edited June 2017

    Hi, ItFinallyHitMe,

    Besides MinusTwo's excellent suggestion for the exercise thread, here are some guidelines for exercise and lymphedema:

    http://www.stepup-speakout.org/Handout%20doc%20for...

    Hoping you'll soon have a great lymphedema therapist on your team!

    Gentle hugs,
    Binney


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  • itfinallyhitme
    itfinallyhitme Member Posts: 123
    edited June 2017

    I appreciate the replies. I will fill in the info and look at the threads.


    My apologies, it's just that this is pretty painful, and now the swelling on the other side I guess is causing problems with my dog ear. For some reason he left me a large pointed protrusion, and when my arm swells (maybe the dog ear too) it gets all rubbed the wrong way and hurts as well.


    I wouldn't mind just waiting, and some pain, but I guess the return of pain after I'd been feeling better, coupled with increased difficulty in living normal life, is getting to me a bit.


    I HOPE it's possible some of this is just surgical swelling, though such late onset seems unlikely. I'm going to try to get back in to see the surgeon. I think I might also have a seroma developing under one arm, though it's not bothering me too much. I'm just worried at the thought of damage being done through the delay as well. Coupled with the fact that all of the doctors have dismissed lymphedema as anything of real concern, though I see my risks are extremely high for it, and the fact that I wasn't given so much as stretching exercises post-surgery ... I'm just frustrated and upset.


    Thank you for your replies. It will take some time but I plan to do as you suggest re the forums.

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  • Binney4
    Binney4 Member Posts: 8,609
    edited June 2017

    finallyhit, please don't apologize for being upset--we all hear you on this. Been there. It does get better, honest! The lymphedema itself is bad enough, but the frustration of having our doctors deny our reality is especially hard to deal with. Hang in there! And please feel free to come here and blow off steam as often and as loudly as you wish. We get it!

    Gentle hugs (chocolate helps!)
    Binney

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  • itfinallyhitme
    itfinallyhitme Member Posts: 123
    edited June 2017

    thanks for understanding, Binney!


    Life goes on. I have stuff to do even with arms that don't quite fit within the space they are supposed to occupy. But as it happens, I have sat down to read the forum, and I'm eating chocolate lol.

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