Dysreflexia (spelling correction}

Long Walker · 10-03-2001, 08:02 PM

My brother is an incomplete C5 quad and worries/complains that he gets dysreflexia. Pain, sweats, headache,increased spasms, inability to tolerate noise changes in temperature and general discomfort. He has information that this is a very dangerous life threatening condition with skyrocketing blood pressure and the possibility of a stroke. The local hospital has little experience with spinal problems and offers nothing but antibiotics and tylenol.
Does anyone have info or advice.
Lucky

[This message was edited by Long Walker on October 04, 2001 at 08:52 PM.]

[This message was edited by Long Walker on October 04, 2001 at 09:05 PM.]

KLD · 10-04-2001, 08:47 PM

AD is a potentially life threatening condition that can occur in those with SCI at or above the T6 level. It is a warning that something is seriously wrong with the person's body (pain someplace) but if you only treat the symptoms you can actually miss a potentially life threatening cause. Most health care professionals don't know about this condition.

Here is some good information:

http://carecure.org/forum/showthread.php?t=10126

Download these documents, keep copies and give them to all healthcare professionals your brother sees. Insist that they read the materials. Tell them that since there are established and published clinical practice guidelines for the treatment of AD that they may be legally liable if something adverse happens to your brother due to lack of action. This should get their attention!!

chuck · 10-06-2001, 04:18 PM

How does he manage his bladder? The only time I ever get dysreflexia has been when my bladder was getting extremely full because my catheter was blocked. When he gets it that would be the first thing I would check, maybe get something to flush it out with or if it appears to not be working just change it out. I know its really scary when you get it and it won't go away and you can't figure out whats causing it and then you finally give up and go to the ER but they can't do crap. Theres also a medication you can keep with you, forgot name, but you can keep it with you and take only when needed. Anyway, first thing be sure bladder is draining and if thats for sure not it theres some other things like a pressure soar maybe or severe constipation, but for me its always bladder.

KLD · 10-06-2001, 08:12 PM

90% of the time AD is caused by bladder or kidney related causes.

8% of the time AD is caused by bowel or other gastrointestinal causes.

2% of the time it is caused by a wide variety of other causes...essentially anything that can cause your body pain.

It is never wise to ONLY treat the AD signs and symptoms with nifedipine or Nitropaste without identifying the cause and treating it as well. Otherwise you are at risk of ignoring an important warning that something is wrong with your body. People have died from AD...but people have also died from the cause of the AD if it is not attended to.

marmalady · 10-07-2001, 08:04 AM

The Paralyzed Veterans of America has some excellent pamphlets they will send you free of charge; some of them are little wallet cards you can carry, a larger pamphlet with more explanation, and a booklet for health care professionals. My son carries the wallet card, as well as the book for docs in his backpack, just in case. Their website is www.pva.org.
It's not only the ER docs who don't know what AD is; my son recently had a baclofen intrathecal implant surgery done by a very prominent neurosurgeon. While he know of AD, his first year neurosurgery resident - who took care of my son postop and wrote the orders on the floor, didn't. I gave him the 5 minute rundown on AD, and he kept looking at me with skepticism, like 'who are you, lady?'. About two hours later, Matt's Bp was 210/110 (his normal is 90/70)!! We were able to get Nitropaste right away, and the resident wrote an order for a painkiller, and the incident was resolved. Told the resident I would bill him for his crash course in AD!

KLD · 10-07-2001, 04:04 PM

Marmalady, unfortunately those materials from the PVA (and written by the Consortium for Spinal Cord Medicine) are no longer free. If you write to the PVA for a copy, the patient versions are now $10.00 each and the professional versions are $20.00.

Fortunately both are still available free by downloading at the links listed in the Great Links forum here (which you can access using the address posted below).

marmalady · 10-07-2001, 06:24 PM

KLD,

Thanks for the update - Things have changed! It's good to know folks can download, though.

10-03-2001, 08:02 PM	#1
Long Walker Junior Member Join Date: Oct 2001 Location: Ontario /Canada Posts: 3	Dysreflexia (spelling correction} My brother is an incomplete C5 quad and worries/complains that he gets dysreflexia. Pain, sweats, headache,increased spasms, inability to tolerate noise changes in temperature and general discomfort. He has information that this is a very dangerous life threatening condition with skyrocketing blood pressure and the possibility of a stroke. The local hospital has little experience with spinal problems and offers nothing but antibiotics and tylenol. Does anyone have info or advice. Lucky [This message was edited by Long Walker on October 04, 2001 at 08:52 PM.] [This message was edited by Long Walker on October 04, 2001 at 09:05 PM.]

10-04-2001, 08:47 PM	#2
KLD Senior Member Join Date: Jul 2001 Location: California Posts: 865	Autonomic Dysreflexia AD is a potentially life threatening condition that can occur in those with SCI at or above the T6 level. It is a warning that something is seriously wrong with the person's body (pain someplace) but if you only treat the symptoms you can actually miss a potentially life threatening cause. Most health care professionals don't know about this condition. Here is some good information: http://carecure.org/forum/showthread.php?t=10126 Download these documents, keep copies and give them to all healthcare professionals your brother sees. Insist that they read the materials. Tell them that since there are established and published clinical practice guidelines for the treatment of AD that they may be legally liable if something adverse happens to your brother due to lack of action. This should get their attention!!

10-06-2001, 04:18 PM	#3
chuck Junior Member Join Date: Oct 2001 Posts: 12	what causes mine How does he manage his bladder? The only time I ever get dysreflexia has been when my bladder was getting extremely full because my catheter was blocked. When he gets it that would be the first thing I would check, maybe get something to flush it out with or if it appears to not be working just change it out. I know its really scary when you get it and it won't go away and you can't figure out whats causing it and then you finally give up and go to the ER but they can't do crap. Theres also a medication you can keep with you, forgot name, but you can keep it with you and take only when needed. Anyway, first thing be sure bladder is draining and if thats for sure not it theres some other things like a pressure soar maybe or severe constipation, but for me its always bladder.

10-06-2001, 08:12 PM	#4
KLD Senior Member Join Date: Jul 2001 Location: California Posts: 865	AD 90% of the time AD is caused by bladder or kidney related causes. 8% of the time AD is caused by bowel or other gastrointestinal causes. 2% of the time it is caused by a wide variety of other causes...essentially anything that can cause your body pain. It is never wise to ONLY treat the AD signs and symptoms with nifedipine or Nitropaste without identifying the cause and treating it as well. Otherwise you are at risk of ignoring an important warning that something is wrong with your body. People have died from AD...but people have also died from the cause of the AD if it is not attended to.

10-07-2001, 08:04 AM	#5
marmalady Senior Member Join Date: Aug 2001 Posts: 3,936	Dysreflexia The Paralyzed Veterans of America has some excellent pamphlets they will send you free of charge; some of them are little wallet cards you can carry, a larger pamphlet with more explanation, and a booklet for health care professionals. My son carries the wallet card, as well as the book for docs in his backpack, just in case. Their website is www.pva.org. It's not only the ER docs who don't know what AD is; my son recently had a baclofen intrathecal implant surgery done by a very prominent neurosurgeon. While he know of AD, his first year neurosurgery resident - who took care of my son postop and wrote the orders on the floor, didn't. I gave him the 5 minute rundown on AD, and he kept looking at me with skepticism, like 'who are you, lady?'. About two hours later, Matt's Bp was 210/110 (his normal is 90/70)!! We were able to get Nitropaste right away, and the resident wrote an order for a painkiller, and the incident was resolved. Told the resident I would bill him for his crash course in AD!

10-07-2001, 04:04 PM	#6
KLD Senior Member Join Date: Jul 2001 Location: California Posts: 865	PVA materials Marmalady, unfortunately those materials from the PVA (and written by the Consortium for Spinal Cord Medicine) are no longer free. If you write to the PVA for a copy, the patient versions are now $10.00 each and the professional versions are $20.00. Fortunately both are still available free by downloading at the links listed in the Great Links forum here (which you can access using the address posted below).

10-07-2001, 06:24 PM	#7
marmalady Senior Member Join Date: Aug 2001 Posts: 3,936	re PVA booklets KLD, Thanks for the update - Things have changed! It's good to know folks can download, though.

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