Question
QUESTION: My daughter was injured in a car accident in 1986 at the age of 17.  Her injury is C2-C4.

For several months she has had increased autonomic dysreflexia. She was hospitalized in April with these symptoms:

heart rate 40
blood pressure 140/80
anxiety
swelling of entire body
pleural effusion

She was diagnosed as being in congestive heart failure and given lasix.  However, the cardiologist that was consulted disagreed, finding nothing wrong with her heart.  We think AD caused this.

In May, she had a TIA.  She was unable to form words or answer questions for an hour or so.  Then she recovered. She was again hospitalized and diagnosed with a TIA.

Her symptoms are worsening again, swelling of the legs, pulse of 40, BP rises if she lays flat, relieved if she sits up.

Any suggestions?  It seems most doctors don't understand spinal cord injuries or autonomic dysreflexia.  One doctor told me that a pulse of 40 is perfectly fine.  A lot of athletes have low pulse rates.  Well, she hasn't been athletic in 21 years and her normal pulse is around 65.  Doctors also remark that a BP of 140/80 or 130/80 is perfectly fine.  However, her normal bp is 100/70 or 90/65.

Any suggestions?



ANSWER: Hi Debby-
What an unpleasant situation.  Here's my best advice, and please feel free to write in again if you need clarification or have follow up questions, deal?

It is very VERY true that most doctors- even ER docs- know very little if anything about autonomic dysreflexia in particular.  That being said, it's super important for you and her and anyone around her alot to know about it.  Seriously, get in the faces of the doctors- AD can kill you and while most doctors mean well, they're used to knowing more than their patients and sometimes require being jarred out of that mindset for you to be heard.  Make sense?

Keeping in mind the above, it's a good idea to get one of those home BP monitors.  I had one, and when having AD it wouldn't even register me, kept saying Error.  My BP is like your daughter's, normally 95/65, but my heart rate is often 110- it goes down as my BP goes up which is, i think the reverse of how it usually works.


OK, thinking out loud, sort of.  The reason I think they are saying it's not AD is the relatively low BP, the trouble forming words.  I'm (with limited knowledge) inclined to agree, and here's why along with some questions for you to ask:

-AD will only occur when something is wrong with the body, ie urinary tract infection, etc- does she have such problems when she has the attacks? it is sometimes hard to tell

-TIAs are the result of travelling blood clots, temporarily clogging an artery then passing through.  SCI makes people more prone to clots- inactivity of the limbs. I had one, leg swelled up horribly.  Have they done any sort of ultra sound? if her legs are swelling, I'd go in and demand an ultrasound for whereever the artery is right before it splits to travel down the legs.  If this is the problem, a week on blood thinners can help immensely

The time to do something is now, though, if her symptoms are worsening.  That pulse is too low, my opinion.  The BP is always higher when flat- if she starts to get the headache get her sitting up if possible.  If you have a doc you like, call them in the morning and try to get an ultrasound.  If the doc- any doc- doesn't want to do it, make them explain Why Not and What The Cause of Her Problems Is. You have the Wild Card here- I've seen my mom use it on my behalf- mothers have the god-given right to freak out if their child is being given less than adequate treatment... Try civility first, of course, but don't let them talk you out of things without explaining thoroughly and without your believing what they say.

Make sense?  Good luck, and I'm out here if you need more info or clarification
Leslie

ps- TIAs may not have lasting heart problems, by the way, so the cardiologist could be right and it still be TIA.  Here is a link on general info regarding TIA
http://www.americanheart.org/presenter.jhtml?identifier=4781

---------- FOLLOW-UP ----------

QUESTION: Leslie,

She apparently has gallstones and her doctor wants her to have her gallbladder out ASAP.  I'm guessing that this could be what's triggering the autonomic dysreflexia.  

However, we're worried that having surgery will trigger AD during the surgery.

Also, like you, her pulse goes down as her BP rises.

She has a 1:30 dr appt and I'm going with her.  In the meantime, please let me know if you have any other advice.

Thanks,
Debby

Answer
Hey Debby-
Gallstones, eh?  Sometimes it seems to be insult to injury, doesn't it?

Here's what I'd ask if it were me (or my daughter)- would gallstones cause her legs to swell and the trouble forming words?  Personally I've Never heard of AD causing those things.  And TIAs supposedly leave no damage but can indicate there's a clot roaming around in you, which is something worth knowing.

Does gall bladder surgery require a general anesthetic?  I would think so, maybe in her case especially- this should make the AD not an issue.  Basically it'll work the same as a feeling person having the surgery-- as long as the area is deadened, they feel no pain, right?  It is that pain that causes AD in a person who cannot feel.  Therefore the docs should still give her the anesthetic (general or local)- even though it might seem pointless since she can't feel the area, it'll stop AD from happening.

That's all I can think of, really- I would seek more than a guess from the doctor as to whether or not the bp issues are related to swelling, word formation, gallstones, etc...  And don't worry about AD in surgery- I've had several since my c7 injury and have never had an issue with it.

Hope that gives you something more to work with.  Let me know, if you'd like to, how it goes
good luck
leslie