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Insight about Brown Sequard Syndrome for Doctors and Medical Professionals
In our survey, we asked 55 people with Brown Sequard Syndrome the advice they would offer doctors treating patients with BSS.
Here are their answers.
“BSS causes fatigue and immune deficiency”
“All of my Drs, nurses & therapists have treated my BSS the same as any other SCI. They've never addressed any non-physical symptoms (energy levels, etc) and none have suggested that I try to fnd support from others with BSS. Those things would have been very helpful and empowering for me to know about earlier on.”
“They view it as just a symptom, not a diagnosis"
“None of my docs explained it to me. I had to research what it all meant and figure out how to deal with my reality.”
“Believe me when I say something is different.”
“I feel like my neurologist did everything he could to quickly assess my situation but since then...i feel like its just routine maintenance. no hope. no encouragement.”
“Don't automatically assume I am asking for painkillers"
“Take the patients symptoms and feelings seriously. Don’t compare them to “functional symptoms” and please read notes from other treating doctors! Yes, we can walk. Yes, we have varying degrees of paralysis and muscle strength. Yes, my reflexes still work even though my leg does not. I don’t really fit into the MS support groups or spinal support groups because we are different.”
Listen, LISTEN, Listen
The NUMBER ONE response from patients is they don't feel their doctors listen to them. They want doctors to know there is more to BSS than the textbook , medical definition they were taught in school.
While our symptoms, on the surface are similar, they do not present equally.
COMMON COMPLAINTS not listed in textbooks- fatigue after simple tasks, getting sick easier than others, recovery from illness takes longer, wounds and skin cuts, bites, rashes on their lack of sensation side) takes longer to heal than their lack of motor side.
PAIN: People with BSS have changing pain levels. Those with BSS for over 20 years can attest to these changes. A person can go for months or years with a continual pain level and suddenly rocket into a 10 pain level and then go back again. Many times this has no obvious cause and effect. Those with BSS say activity, fatigue, stress, lack of stretching, illness, unknown/unfelt internal, body sickness can all cause an increase in pain symptoms.
"Be Interested"
Symptoms BSSers report that doctors DON"T attribute to BSS
The most commonly reported symptom, not attributed to BSS by doctors, was fatigue. Many people with BSS state they experience excessive fatigue over basic tasks such as: doing the dishes, taking a shower, doing the laundry, cleaning and dressing. They also report requiring a healing or recovery time, after doing certain tasks outside their daily routine such as walking a distance, driving, cleaning, standing for some time, going to a mall or after attending a social get together. The more physical and stressful the event is then the more recovery time needed.
Emotional stress also plays a reported factor with pain escalation and fatigue.
While many experience this, the amount of recovery time is different for each person.
BSSers also report having memory issues, trouble finding words and different levels of anxiety since their injury.