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Thread: Incomplete vs. Complete?

  1. #1

    Incomplete vs. Complete?

    Hi all,

    My husband was injured in a bicycling accident on July 9. He spent 5 weeks in the hospital/rehab (at Santa Clara Valley Medical, here in the Bay area) and, since his release, has been doing a combination of physical therapy at the hospital, and exercise therapy at an outside facility. At Santa Clara, he was diagnosed as a T4 complete injury (ASIA A). In the last 3 months, though, he's regained control over his abs, obliques, and a good bit in his hips/hip adductors. From what I've been reading, this seems to be a lot of gains for someone who is supposedly complete? Could it be they diagnosed the level of injury incorrectly?

    On an unrelated note, any suggestions on dealing with swelling in the feet? Since getting his permanent wheelchair a week or two ago, he's had pretty bad swelling at the end of the day. We've tried a variety of compression socks/ Teds, but they're not working.

    Thanks. This is a great resource

  2. #2
    Hi It is possible as the swelling resides / I am glad he has regained control of those muscle groups

    SCI injuries are weird like that I am not a specialist but a misdiagnosis We'll let me put it this way
    I believe in 2nd or 3rd opinions ,
    no 2 SCI are 100% identical imop Similar yes Prognosis of course will vary from Dr to Dr

    Speaking on my behalf of Teds for swelling I like them for myself

    There is mixed stories or opinions regarding these compression stockings
    Swelling in feet ?
    You stated that he is in his wheelchair
    But > how many hours a day does he stay in it ?

    There is alot of factors
    Blood Settles to the lowest areas legs etc...( Gravity ) When my legs swell I usually go to bed for a little bit and sometimes elevate my legs higher than normal bed style .
    Dr Wise Young - SCI -Nurse here could chime in very Helpful info

    I wish you both the best and Welcome to Care Cure

    There is plenty of information on your topic already in the archives etc...
    Sincerely ; GL

  3. #3
    Is his swelling worse now, or the same as when he was in rehab? Has he had tests to be sure he does not have a DVT? Is he still on blood thinners to prevent DVT?

    Compression hose will help some with edema, but it would also help if he can lay down and get his feet above his heart sometime during the middle of the day. Keeping his salt intake down will also help some.

    Has he seen his SCVMC physician recently? He should have another ASIA exam to determine if he can be classified as incomplete yet. Does he have any sensory return, or just motor? It is possible to appear complete during spinal shock, but as this subsides, often it is determined that the injury is actually incomplete. How much more return he will get is impossible to say at this time.

    Can you get him to join our Community too?

    (KLD)

  4. #4
    Thanks for the quick replies!

    His swelling is worse now than when in rehab, but his doctors don't seem to think it is DVT. He was on the lovenox injections thru mid-September It just started when he changed chairs-in this new one, his legs are tucked further under him, so I think that might be causing it. Right now, he's working from home, so he works for a few hours in the morning, and then gets in bed with feet propped up while eating lunch. He can work from bed on his laptop, so he does this when the swelling gets really bad. I ordered some leg massagers online. Do you know if these have worked for others?

    He's hesitant to do another ASIA exam because the last one was a terrible experience-he was 5 days post accident, newly arrived at SCVMC from an 8 hour long ambulance ride, in terrible pain, and the resident performing the test spent about 10 minutes doing the exam, told him he was ASIA A and that he'd never walk again , and left the room...it was a bad night for us both and not something either of us want to do again until we're certain there has been a change.

    He is a member here and has been since he left rehab. He just doesn't like posting I do think having access to this community has been instrumental in his recovery thus far.

  5. #5
    Senior Member jschism's Avatar
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    there's no benefit from getting re-evaluated, not like a person gets special benefits depending on ASIA rating, just giving money to doctor for nothing. The person with SCI knows what they are capable of and what works, that's all that matters. Don't need a doctor to say what a person can and cannot do. ASIA exam at RIC is $500 and medicaid/medicare won't pay for those.
    Last edited by jschism; 10-17-2011 at 10:54 AM. Reason: add

  6. #6
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    In my experience insurance covers much more therapies for incompletes than it does for completes. It might be worth your while to check into it.

  7. #7
    Your husband had a DVT? And he continues to have swelling in his legs?

    First, if the increased swelling started soon after stopping the Lovenox, I would revisit the possibility with his doctors that he has another DVT. Slight differences in wheelchairs shouldn't make a difference. Has he had a repeat ultrasound?

    It is also very common to have leg swelling for people who have had a DVT in the past, or people who have an IVC filter in place.

    He should be wearing compression stockings. Higher pressure (ex. 20-30mmHg or higher) then what you have been using. Not Ted hose. Ted hose are BAD because they have the toes cut out (which can cause pressure sores on the toes) and they are not high enough pressure. You will need to talk with the physiatrist or primary care doctor to get a prescription for higher pressure compression stockings and try them. Sometimes you can just buy them online/at Walgreens, but some stores want to see a script to make sure a doctor has recommended the higher pressure. There are sizing charts on the boxes based on the diameter of his legs. They can be hard to get on, but get easier with practice. They will help.

    It is important for anyone who has had a DVT to wear compression stockings for at least 1-2 years after a DVT to help prevent post-thrombotic syndrome. Here's the explanation of a clinical trial that explains this benefit.

    http://www.annals.org/content/141/4/I-12.full

    Doctors forget to remind patients to do this. The stockings will also help prevent developing another DVT. Some insurance companies will cover them as well.

    Jobst historically makes some of the better compression stockings. Their quality has decreased a little but they are still pretty good. Walgreens also sells a line that is a little cheaper that is pretty good. If the stockings are REALLY cheap, they often aren't as good quality and will wear out faster.

    I am so sorry your husband has such a poor experience when he had his first Neurologic/ASIA exam. It was very similar for my father. That resident was an A$$hole (excuse my language). Cruel, thoughtless, and wrong actually.

    Hasn't your physiatrist examined your husband again since his initial exam? A lot of docs are rushed (lazy.....?) and don't really examine their patients. But honestly, it is not essential to go through the entire exam. I agree a little with jschism that the most important thing is what you can DO, not a checklist of every nerve/muscle group.

    It is wonderful your husband is regaining some function below the level of his injury. That is great news. Tell him to keep working at it. It is very common for people to regain some function below their level of injury and it can occur months and even years after injury.

    Complete injury does not mean that you have no function below your level of injury. Complete injuries are ONLY defined by whether or not you have sensation/motor control at the anal sphincter (S4-5 level). While it is true that people with incomplete injuries are more likely historically to recover walking function, that is not absolute. For example, my father had no sensation/motor function at the anal sphincter soon after his injury (so "complete"), but later recovered some function there. Also, since his fracture was at T11-T12 (and this correlates with around L2/3 in the spinal cord) he also had some preserved movement in his legs anyway (specially at hips and even quads). Over time, he regained more, and now walks with crutches and AFOs. He worked like crazy though.

    He also had a DVT, and has worn compression stockings ever since and his legs/skin look great and he didn't develop any post-DVT issues. He wears them only during the day, and takes them off at night in bed.

  8. #8
    I don't see anywhere that she is saying he had a DVT before.

    TED is a brand name that many people use generically. Compression hose of any brand (including Kendal TED) can come with or without inspection toes. This feature has no impact on their effectiveness.

    Sitting with the legs more flexed in the chair (tucked under) can increase his DVT risk though, as it can compress the venous drainage vessels behind the knee and cause more pooling. I would want to have more Doppler tests to rule out DVT, esp. before using any lymphedema sleeve therapy (leg pumps). If he actually has a DVT, the use of these is dangerous. They should only be used if a DVT has positively been ruled out.

    I would also endorse giving feedback to the attending physician (physiatrist, ideally) about the unacceptable performance of the resident, and would also question their competence to do a full ASIA exam, which should take longer than 10 minutes. Unfortunately SCVMC is no longer CARF accredited, so you cannot file a complaint with CARF about this.

    He should be getting a 3 month and 12 month check-up after his rehab discharge at SCVMC though.

    (KLD)

  9. #9
    No, no DVT before, though I will make sure he gets another doppler done before he uses the leg sleeves. With a DVT, will the swelling go down at night? Or does it stay swollen? I do the leg measurements in the morning, and everything looks fine (the swelling goes away completely over night).

    I did talk to the head of rehab about the resident's poor performance, and was told "that's why they're residents-they still have things to learn." While I know this was true, it bothers me that he was allowed to perform the exam, and deliver such news to us. I would've preferred him to simply say that each person heals differently and that there aren't any guarantees about recovery, which is basically what we've heard ever since then. I don't want to cast too much negativity on SCVMC, though, because, with very few exceptions, they were wonderful to us during what was (And is) a difficult process.

  10. #10

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