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July 8th 2007

Spinal Cord Injury Information & Resource Directory

Dad on Wheels

A Medical Condition: Every Person Should Know!
By Leslie A. Johnson, BSW

After two years of becoming paralyzed, I started to experience pounding headaches, goose bumps, and nausea every time I would get a Urinary Tract Infection (UTI).  At this time, I could urinate on my own through a Texas Catheter that went into a bag attached to my leg.  UTI’s are common upon the disability community, but I would get them once a month.  With every UTI, I would expect a pounding headache to accompanying the infection, which is a package deal I would rather not have.  Let me explain what the pounding headaches would feel like, if I can describe it with words.  I have never had a migraine, but some people explain that a migraine has excruciating pain.  The pounding headaches start from the back of the skull and pound with every beat of my heart.  This condition is life threatening and needs to be addressed immediately.  The condition is called Autonomic Dysreflexia (AD) or referred to as Hyperreflexia. 

     Autonomic Dysreflexia (AD) is a potentially dangerous condition related to spinal cord injuries.  To understand this condition, mentally picture a garden hose and a person either kink’s the hose or put your finger at the end of the hose to stop the water flow or shorten the stream.  Now think of the garden hose as the blood vessels and this is what happens to a person whom has a spinal cord injury.  My injury to my spine is Cervical 5 and 6 (C5-6), which is just about in the middle of my neck.  To get a clearer understanding put your finger in the middle point of your neck, between the base of the skull and the end of the neck, and you can feel the C5 and C6 area of the spine.  If anything below the injury of my C5 -6 areas are being invaded like pressure soars, urinary infection, bowels, or even something simple as an ingrown toe nail or a wrinkle in the bed sheet will cause a meltdown in communication between the spine and the area in trouble.  Remember the garden hose example and the kinking of the hose?  Think of your blood vessels as the hose, so when communication in the spine and brain is blocked, this causes the blood vessels to constrict and raise the blood pressure.  The blood pressure rises to 200 over 100 and mine has been as high as 200 over 120, which is in the dangerous zone of a stroke.  My blood pressure runs low, around 90 over 60, so with the blood pressure shooting up and blood vessels constricting; the result are a pounding headache, goose bumps, face flushing, and being nauseated. 

     The frightening aspect about AD is most doctors are not familiar with this condition, especially family and emergency room doctors.  Doctors might tell you they know what AD is but you can tell if they know by the expression on their face and their reactions.  If doctors are not familiar with AD then how do they know how to treat this condition?  This is where you come in as being educated about AD.  I wanted to write this column about Autonomic Dysreflexia to educate every reader about what to do if symptoms occur and how to inform your doctor.  I went through many family doctors and emergency room doctors before finally doctors’ started to take this condition seriously.  If you have had any experience with doctors, then you might know some doctors do not like being told what to do and how to do a procedure.  At least this is my experience with many doctors.  I am not a doctor or educated with any value in the medical field, but I do offer experience which is sometimes a value that cannot be replaced by any degree.  I am not saying anything bad about doctors, but many are set in their ways.  I have found that new doctors from either residency or graduation are being educated more on AD. 

    Symptoms

      A few symptoms of Autonomic Dysreflexia are again:  pounding headache, goose bumps, sweating, flushing in the face, red blotches above the spinal cord injury, stuffy nose and nausea.  Every one is different and unique, so a person may not have all the symptoms.  For example, I cannot sweat due to my disability, so I do not have any sweating symptoms, but I do get very hot.

    Causes

     A few causes of AD are Urinary tract infections, pressure sores, obstruction of a catheter and bowels, sexual stimulation, ingrown toe nail, and a wrinkle in a sheet.  The wrinkle in the sheet is most likely due to no feeling and the sheet is some how giving a bad sensation.  In summary, the causes are of any stimuli below the injury of the spine. 

What to Do

     What you should do if you are experiencing Autonomic Dysreflexia?  If you feel your blood pressure is high sit up and do not lie down.  Blood pressure typically goes up when a person is lying down.  If you have a personal care assistant or an automatic machine take your blood pressure.  A person needs to find out why AD is occurring and stop it immediately.  The reason I get AD is usually because of UTI’s, so I know to get to the hospital and get an indwelling catheter inserted inside.  Remember me telling you that I could urinate on my own, well; now I cannot because all the Bladder infections and UTI’s led me to kidney failure, more about this in a moment.  Again, find what is causing AD and the cause is the only way to stop it.  Check your catheter for kinks or blockage, bowel irritation or blockage and are there any clothing too tight.  There will be a link to full causes and symptoms of Autonomic Dysreflexia or do a Google search.      

How to inform your doctor:

     How to explain AD to doctors who are not familiar with the condition?  If you go to the hospital, you might have already found the cause and you did not know it.  Your blood pressure could be back to normal.  Here are a few suggestions when speaking to the Emergency room doctors’.  Ask the doctor if he or she is familiar with the condition Autonomic Dysreflexia.  If you cannot remember the name, explain to the doctor what type of injury you have and you are experiencing pounding headaches due to lack of communication because of your injured spine.  I carry a print out card in my wallet that doctors can read and I had the hospital and family doctor put the information in my medical files.  I would suggest the same for you, because depending on the amount of pain you are experiencing, you may not be able to describe or communicate what you are feeling.  Try not to demand the doctor to do this or that because many doctors have a set way and do not like a patient diagnosing him or herself.  If the doctor totally ignores your suggestions and explanations of your symptoms, ask a nurse to do a search on the computer about Autonomic Dysreflexia.  Nurses can be more compassionate and have more patients then the doctors.  If you are explaining AD to your family doctor, set up an appointment with a longer appointment time.  Have you noticed sometimes doctors can rush you in and out of the examining room?  The reason is most doctors usually allow fifteen minutes a patient.  Call your doctor ahead of time and ask for a longer period to see him or her.  Many doctors will do this for their patients.  Plan ahead for your appointment and be prepared to explain to the doctor about AD.  If you have to write down a web site address, then give the site to the doctor.  I would suggest the doctor put the information about Autonomic Dysreflexia in your file at the office and the hospital file.

     I had the pleasure to interview Dr. Deborah Lightner, from the Mayo Clinic, who is an Urologist with an experience and specialization on Neurology.  Dr. Lightner has been in the Urology Field since 1987.  As an expertise in her field, Dr. Lightner recommends a person with a spinal cord injury to see an Urologist, with a Neurology background, on a regular basis.  Dr. Lightner went on to explain that family doctors and emergency room doctors are not familiar with Autonomic Dysreflexia.  According to Dr. Lightner, “The bladder is an unreliable witness”, so do not assume you are emptying your bladder like I thought before kidney failure.  Dr. Lightner could not express enough that this is a medical condition that needs attention right away.  I asked Dr. Lightner, “What is the highest blood pressure you have seen with Autonomic Dysreflexia” and she told me, “I have seen strokes”.  I was amazed, so I asked her again, “Strokes with spinal cord” and she replied “yes”.  Dr. Lightner suggested carrying the Autonomic Dysreflexia information card with you, so you can show the doctor.  Dr. Lightner went on to explain that not only does the blood pressure go up, but the heart rate will go down.  A person with a spinal cord injury may have a low blood pressure that is normal for him or her.  For example, a person with a spinal cord injury could have a norm blood pressure of 90 over 60, this is my example.  Dr. Lightner informed me with a person who runs a low blood pressure could experience AD with the high number of 150.  In other words, my blood pressure runs 90 over 60, I experience AD anytime mine goes beyond 120 as the high number.  I have starting experiencing the pounding headaches and took my blood pressure and my pressure was 120 over 90.  Usually the blood pressure is not what typically needs to be treated but the stimulus has to be stopped, like a broken bone.  Dr. Lightner explained to me that a person can break a bone below the injury and experience Autonomic Dysreflexia.  My interview with Dr. Deborah Lightner was a delight and informative for me and hopefully will inform everyone who reads this column.  I would like to thank Dr. Lightner for the interview and a special thanks to John J. Murphy of Mayo Clinic Public Affairs for the setup of the interview.  For more information on Autonomic Dysreflexia and other important spinal cord information, please visit:  www.mayoclinic.org.  

In summary, I would like to explain a few things that happened to me.  For the first 15 years of my injury, I thought I was urinating on my own, but I was not.  I was having bladder spasms to give me the deception that I was empting my bladder.  Over the years, my bladder became enlarged and urine backed up into my ureters and to my kidneys.  The ureters connect your kidneys to the bladder.  I went through kidney failure because of lack of knowledge and not seeing an Urologist on a regular basis.  Now the kidneys are under control, but the ureters are still a twisted and dilated.  I have to check my blood levels on a regular basis to make sure the kidneys are working properly.  Now I have to catheterize intermediate every four to six hours. The conditions and complications could have been prevented, if I only took better care of myself and have been educated about disability issues and medical conditions. 

Dr. Deborah Lightner (2007).  Mayo Clinic. -
John J. Murphy (2007). Mayo Clinic Public Affairs. Mayo Clinic.
www.mayoclinic.org -
The information above is courtesy of the Spinal Cord Injury Information Pages. http://www.sci-info-pages.com/index.html -
For more information, please visit: http://www.spinalcord.org/html/factsheets/aut_dysreflexia.php


DAD on WHEELS
Leslie Johnson

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