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Thread: Edema again

  1. #1

    Edema again

    I know this thread recurs constantly, but I don't have clear answers to some basic edema questions. I have severe edema both feet, and had DVR in one leg a year or two ago.

    (1) How concerned about this should I be? It looks weird, my days of wearing shoes are long gone, skin has rash on one foot, but how serious is it?

    (2) What kind of specialist should I see? Someone said a vascular doctor or something maybe?

    (3) What kind of stockings should I wear? Tight or loose (I get different answers). Closed or open toe? Custom or off-the-shelf? Those electrical kind?

    I've tried Jobst-type open toe, and my legs look very weird afterward. The tops are very swollen, toes are very swollen, it just looks odd.

    (4) Everyone says "raise your feet above your head". For those of us not in hospitals, exactly how is one supposed to do that?

    (5) Can this be making me wake up because of need to void more?

    (6) I get freezing easily. Can this be a cause?

  2. #2
    You should elevate your legs as high as possible and as much as possible. The best hose are the 30-40mmhg which should fit very snugly and they should covder your toes and have a little opening. Kee[p them on while up, out of bed. Can take them off when lying down.Then put them on before getting out of bed.
    CWO

  3. #3
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    Quote Originally Posted by xsfxsf View Post
    (4) Everyone says "raise your feet above your head". For those of us not in hospitals, exactly how is one supposed to do that?
    I have a foam pad 3" thick and 12" wide across the bottom of the bed under the bed pad. So my feet are elevated a few inches every time I lay down. Not above my head, but perhaps slightly above my heart. This made a big difference in my swelling.
    T4 complete, 150 ft fall, 1966. Completely fused hips, partially fused knees and spine, heterotopic ossification. Unsuccessful DREZ surgery about 1990. Successful bladder augmentation using small intestine about 1992. Normal SCI IC UTI problems culminating in a hospital stay in 2001. No antibiotics or doctor visits for UTI since 2001: d-mannose. Your mileage may vary.

  4. #4
    Quote Originally Posted by xsfxsf View Post
    I know this thread recurs constantly, but I don't have clear answers to some basic edema questions. I have severe edema both feet, and had DVR in one leg a year or two ago.

    (1) How concerned about this should I be? It looks weird, my days of wearing shoes are long gone, skin has rash on one foot, but how serious is it?

    (2) What kind of specialist should I see? Someone said a vascular doctor or something maybe?

    (3) What kind of stockings should I wear? Tight or loose (I get different answers). Closed or open toe? Custom or off-the-shelf? Those electrical kind?

    I've tried Jobst-type open toe, and my legs look very weird afterward. The tops are very swollen, toes are very swollen, it just looks odd.

    (4) Everyone says "raise your feet above your head". For those of us not in hospitals, exactly how is one supposed to do that?

    (5) Can this be making me wake up because of need to void more?

    (6) I get freezing easily. Can this be a cause?
    I don't have all the answers to your questions, but some comments on a few:

    (1) How concerned about this should I be? It looks weird, my days of wearing shoes are long gone, skin has rash on one foot, but how serious is it?
    What you are experiencing with this rash is probably stasis dermatitis, an inflammatory skin condition that develops secondary to fluid build-up, or blood pooling just under the skin.

    (2) What kind of specialist should I see? Someone said a vascular doctor or something maybe?
    You might want to consult a board certified vascular surgeon who can do arterial vascular studies to determine the blood flow in your lower extremities.

    (3) What kind of stockings should I wear? Tight or loose (I get different answers). Closed or open toe? Custom or off-the-shelf? Those electrical kind?
    If you have very thin legs, it can be very difficult to be fitted with compression stockings. My legs are very thin and the compression doesn't fit where it needs to. I have never been able to find a stocking (even by consulting with an orthotist) that fits my very skinny legs properly to make a difference.

    (4) Everyone says "raise your feet above your head". For those of us not in hospitals, exactly how is one supposed to do that?
    You can prop your legs up with pillows, but the best bet is a foam wedge.

    (5) Can this be making me wake up because of need to void more?
    Absolutely. During the night, when you are reclined, the fluid in your legs drains and is reabsorbed by your kidneys to be released through the urinary tract.

    Your #6... I can't comment on that.

    All the best,
    GJ

  5. #5
    Thanks very much SCI-Nurse, gac3rd, and gjnl for all the helpful advice and information. I will start implementing that soon. Three further questions:

    (1) (re gjnl) I have fairly fat legs in fact. And fairly long. The Jobst stockings I get only come up to mid-thigh, then the blood seems to pool above it. How high should these stockings reach, or should I get custom stockings?

    (2) (for gjnl) You are right! I looked at the picture and I do have stasis dermatitis, early stage. The late stage looks pretty terrifying. Is a vascular surgeon the person I should see to prevent this? (My doctor prefers to have specialists deal with SCI-related stuff, I think). I hope this is not urgent to deal with.

    (3) The word "vascular surgeon" kind of scares me. Is there a doctor who does the same thing, without the "surgery" part? (Don't like surgery or surgeons, long story).
    Last edited by xsfxsf; 11-17-2011 at 02:08 AM.

  6. #6
    Quote Originally Posted by gjnl View Post
    What you are experiencing with this rash is probably stasis dermatitis, an inflammatory skin condition that develops secondary to fluid build-up, or blood pooling just under the skin.
    Your knowledge never ceases to amaze me as I have had this baffling rash on each of my feet ever since I started sleeping on my back with my feet below heart level. The rash only exists where the opening of the TED stockings is and subsequent swelling. Coincidentally I have an appointment with my Doctor tomorrow and I will put this possibility to her.

  7. #7
    This is dependent edema and due to autonomic dysfunction from the SCI disorder- vsodilation etc. of the veins, low blood pressure etc and the blood doesn't get back to the heart so you have to help it with elevation and hose.
    I would ask for the custom stockings but are these the brown JOBST- or stocking swith the 30-40 mm Hg with the gradient compression?
    Also, you can be put on diuretics if thought to be due to other issues and the swelling isn't resolved with elevation and when you are in bed. Of course it will come back but if this helps that is the treatment.
    Diuretics are reserved for those with edema that doesn't resolve and blood pressure and things not resolved with elevation and hose.
    Vascular issues such as an occlusion are typically not the problem that could be fixed by a surgeon unless you suddently develop swelling, it doesn't resolve, have pressure ulcers that aren't healing etc... And even then, they typically will order anticoagulation(blood thinners) etc.(Do you take a baby Aspirin or 81 mg of aspirin a day? )and surgery only done in extreme cases where the cause is not from the effects of the SCI.
    And your doctor can and should be checking your heart functions and kidney function- the other causes of unresolved edema.
    CWO

  8. #8
    Quote Originally Posted by xsfxsf View Post
    Thanks very much SCI-Nurse, gac3rd, and gjnl for all the helpful advice and information. I will start implementing that soon. Three further questions:

    (1) (re gjnl) I have fairly fat legs in fact. And fairly long. The Jobst stockings I get only come up to mid-thigh, then the blood seems to pool above it. How high should these stockings reach, or should I get custom stockings?
    Personally, I would go to an orthotist and be fitted with custom stockings. Fit and placement of compression are key in how well stockings work for edema.

    (2) (for gjnl) You are right! I looked at the picture and I do have stasis dermatitis, early stage. The late stage looks pretty terrifying. Is a vascular surgeon the person I should see to prevent this? (My doctor prefers to have specialists deal with SCI-related stuff, I think). I hope this is not urgent to deal with.
    When my wife first noticed the slight rash I had, she said it looked like I was rusting. (NL always the comedienne). I sleep with my feet elevated every night and I have a power wheelchair with power tilt. I spend several minutes every couple of hours tilted back during the day. My rash has not gone past the "rusty" looking stage, and in fact, has gotten better over time. It takes forever (if ever) for the color to dissipate.

    (3) The word "vascular surgeon" kind of scares me. Is there a doctor who does the same thing, without the "surgery" part? (Don't like surgery or surgeons, long story).
    I understand your concern about "surgery." I had some vascular studies done in the practice of a vascular medical group (all the doctors in the practice were vascular surgeons), but I only saw a technician who did tests to evaluate peripheral pulses for peripheral vascular disease or arterial insufficiency of the legs that can present with edema. In my case the technician used a Doppler scanner that obtains pressures from the legs and compares them to the arm pressures to create a comparison index that indicates arterial function. These studies didn't indicate any arterial disease and a report was sent to my primary care physician who originally ordered the tests. If there had been abnormalities in the studies, I would have been referred to one of the vascular specialists.
    Another thought...Make sure that there isn't too much pressure on your thighs, i.e., that you cushion is giving proper support to your legs.

    All the best,
    GJ
    Last edited by gjnl; 11-17-2011 at 02:37 PM.

  9. #9
    Thanks. I made an appointment with a vascular doctor. My doctor was a bit skeptical though I would be able to get 30-40 type stockings on at all (I can barely get on socks). Right now, yes, I have been trying the brown Jobst type, although I think there is some fit problem, my toes stick out a fair amount. And the leg/foot looks very, just "weird" after wearing the Jobsts for a while. Red marks at the top of course (concerned about pressure sores though there) but kind of lumpiness and bunching up of the foot itself. The foot tends to swell up quite a bit anyway even with Jobsts. I already take Coumadin (I am beginning to think my doctor will never take me off Coumadin).

    Quote Originally Posted by SCI-Nurse View Post
    This is dependent edema and due to autonomic dysfunction from the SCI disorder- vsodilation etc. of the veins, low blood pressure etc and the blood doesn't get back to the heart so you have to help it with elevation and hose.
    I would ask for the custom stockings but are these the brown JOBST- or stocking swith the 30-40 mm Hg with the gradient compression?
    Also, you can be put on diuretics if thought to be due to other issues and the swelling isn't resolved with elevation and when you are in bed. Of course it will come back but if this helps that is the treatment.
    Diuretics are reserved for those with edema that doesn't resolve and blood pressure and things not resolved with elevation and hose.
    Vascular issues such as an occlusion are typically not the problem that could be fixed by a surgeon unless you suddently develop swelling, it doesn't resolve, have pressure ulcers that aren't healing etc... And even then, they typically will order anticoagulation(blood thinners) etc.(Do you take a baby Aspirin or 81 mg of aspirin a day? )and surgery only done in extreme cases where the cause is not from the effects of the SCI.
    And your doctor can and should be checking your heart functions and kidney function- the other causes of unresolved edema.
    CWO

  10. #10
    OK I am back from the vascular doctor who basically said the same things you guys did.

    The good news is that the problems are not serious. There is no health risk associated with severe edema in the short term (ulcers a risk long term, like 10-20 years). It does look ridiculous though.

    The other good news is that with raising the legs and some light compression, she thinks most of the edema will go away.

    The bad news is that it is apparently very tough to eliminate the edema completely. I would have to get very expensive, fancy stockings or some complex device. I am probably too lazy for that. She also said that it doesn't really matter that I cannot wear shoes any more because it probably would not be safe for me to wear most shoes since they might cause sores (I was sick of wearing these huge slippers).

    So, I will just keep an eye on the skin and try and wear some stockings and keep foot elevated. But on the scale of things, it's not nearly as bad as most of the other health problems with SCI. It's kind of refreshing to have a health problem that ISN'T incurable and life-altering, as a matter of fact. That's not the case with most SCI problems that's for sure.

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