CHIARI MALFORMATION AND ITS IMPACT ON COGNITIVE FUNCTION AND SENSORY PROCESSING

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1 CHIARI MALFORMATION AND ITS IMPACT ON COGNITIVE FUNCTION AND SENSORY PROCESSING Leslie Schrader, Jill Fraizer No two people with Chiari exhibit the exact same set of symptoms, yet, a significant amount of patients experience symptoms that are the same. Each Chiarian surveyed within this report has a minimum of five symptoms still lingering even many years after their last decompression surgery, with some experiencing more symptoms than before surgery. Repeatedly, we are told that certain symptoms are not related to Chiari malformation. We would be willing to accept that as a fact if our other common denominator could be found. Unfortunately, at this point, sufficient research has not been done on this disorder nor has there been enough taught on Chiari malformation in medical schools. Very few have had the proper training to qualify them as experts. We need more research and education.

2 CHIARI MALFORMATION AND ITS IMPACT ON COGNITIVE FUNCTION AND SENSORY PROCESSING INTRODUCTION Many people with Chiari malformation experience memory, sensory perception, cognitive and motor skill deficits, yet many of our medical professionals do not recognize these symptoms as being related to Chiari. Chiari patients are repeatedly told that sensory perception deficits, cognitive functions, especially memory, and language skills most likely have no correlation with their disorder. Even though the cerebellum is not where commands may be initiated, it assists in making these motor commands smoother and more accurate, including cognitive functions (James Knierim). Because we have access to more Chiari patients than a typical medical provider has, we wish to provide them with results that support the fact that more people suffer from these deficits than those who do not. We hope these results emphasize the fact that much more research needs to be done specifically on how the damage to the cerebellum in a patient with Chiari malformation has on cognition, memory, sensory perception and motor skills. METHOD USED A questionnaire was circulated amongst many Chiari populations from around the world via the internet consisting of 80 questions pertaining to cognitive, sensory perception, muscle function, autonomic, balance functions and other symptoms. Fifty three questionnaires were returned. It is possible that those who would have responded that they feel no residual or long-lasting Chiari symptoms did not participate in this study because they may no longer be a part of an online support community. RESULTS Twenty five percent of respondents (13) have not yet been decompressed, so we can expect that the majority of them will still experience significant symptomatology. However, one would also expect a decrease in symptom- 2

3 atology after foramen magnum decompression. When asked if they felt they were better post-operatively, 51% of respondents felt they still have some residual effects hanging on. Twelve patients either do not notice any difference after their surgery or feel they are much worse than before with one of those being relieved of initial symptoms, but experiencing an entirely new set. Not one respondent stated they felt their surgery corrected every symptom of Chiari. Not surprisingly, the symptoms that are most commonly associated with Chiari malformation ranked extremely high in the questionnaire among both decompressed and those not decompressed. Many physicians will agree that when a patient presents with typical symptoms such as headache and neck pain that increase in intensity with exertional activities like laughing, coughing, sneezing most likely accompanied by numbness and tingling in the extremities (Jeffrey Greenfield) that these may definitely be related to Chiari (Figure 1). However, what is surprising is that once we removed all of the obvious, anatomically-consistent symptoms, we were left with an extraordinary amount of sensory perception symptoms ranking extremely high as well as cognitive functions with fatigue being the top symptom experienced by patients with Chiari malformation. (Figure 2). These data lead one to believe that a large portion of the Chiari population could be diagnosed with a sensory perception disorder, however only one of the respondents has an official diagnosis. 3

4 Memory loss ranks in eighth position even when placed amongst the acknowledged Chiari symptoms. We can also notice that only nine less people responded positively to difficulty reading and focusing on text, putting cognitive deficits also high in the symptoms experienced by a patient with Chiari. Even those symptoms that came in with only 4% of respondents experiencing still deserve recognition. The fact that two people out of the 53 experience the same symptom should be considered significant and deserving of more re-search and education. Given the small number of respondents to this questionnaire compared to the entire Chiari population, the potential exists that Chiari patients who did not respond to the questionnaire also experience said symptom. That means the potential exists that for every 1,000 people with Chiari, 40 of them may carry the same symptom. Broken down, this is one out of every 25 patients, a very significant portion of the Chiari population. CONCLUSION These data strongly support evidence that a significant number of people with Chiari malformation experience symptoms of cognitive, motor, speech and sensory perception deficits. Much more research needs to be done on how Chiari affects these areas of our brains. 4

5 QUESTIONNAIRE RESULTS Totals Percentage Number of Respondents I have been decompressed and I still have some residual effects hanging on % I have not been decompressed % I have been decompressed and I am worse than before % I have been decompressed and I don t notice any difference % Other: It helped some but more symptoms occurred % I have been decompressed and everything appears to be fixed % Symptoms Fatigue % Headache % Pressure / pain in the neck % Painful tension in neck % Visual disturbances / loss of vision / spots in vision / double vision / seeing spots or "halos" / nystagmus % Dizziness % Tingling / numbness in the extremities % General imbalance / clumsiness % Memory loss % Back pain % Intolerance to bright light / difficulty adjusting to light change % Intolerance to loud / confusing sounds % Vertigo from position change or sudden standing % Migraines % Insomnia % Popping / cracking sounds in neck or upper back when stretching % Ringing in ears (like the tone heard in a hearing test) % Pressure in ears / ears feel stopped up % Depth perception problems % Difficulty walking on uneven ground / feeling ground under feet % Pressure / pain behind the eyes (soreness in the eyeballs) % Difficulty reading / focusing on text % Burning sensation in extremities /shoulder blades % Tingling / crawling feeling on scalp % 5

6 Visual floaters % Poor / degraded motor skills % Swaying % Poor blood circulation/cold hands & feet % Spontaneous vertigo % Gag reflex problems / lack of gag reflex % Dehydration / excessive thirst % Restricted movement % Pain when changing position % Nausea % Slurred speech % Dry skin and lips % Hear heartbeat in ears % Pain & tension along ear / eye / jawline % Difficulty negotiating steps % Neck spasms % Difficulty swallowing / lump in throat / sore throat / swollen lymph nodes % Sinus / mucous problems % Frequent urination % Electric like burning sensations % Astigmatism % Decreased sensitivity to temperature % Loss of sexual interest / lack of sensation in pelvic area % Fluid-like sound in ears (like water running) % Legs feel heavy % Decreased sensation to touch in extremities % Hand tremors % "Floating" sensation % Difficulty driving % Skin problems % "Strangling" feeling % Pulling sensation while sitting / standing % Decreased muscle tone % Pressure / tightness in chest % Thinning hair % Menstrual problems /severe cramping during period % Hiccups associated with drinking carbonated beverages % Low body temperature % Sleep apnea % Intense itchiness w/profuse sweating % 6

7 Loss of bladder control % Throat closes when lying flat % Sudden / abrupt changes in blood pressure due to awkward position of head % Lump in throat % Loss of smell / problems with sense of smell % Drooling % Unequal pupil size % Swollen face % Low blood pressure % Thickening of finger joints % Loss of taste % Oscillopsia % Albinism % Vomit in sleep % Color blindness % Seizures % Black outs % Swelling in back of neck % Weight gain % High temperature, never low % Gastrointestinal issues % Frequent falls % Flushing % Diarrhea/constipation % Mood swings % Subluxations % Dislocations % Pulsing % Related Conditions: Occipital neuralgia % Sleep apnea % Syringomyelia % EDS % Dysautonomia % Scoliosis % Occult tethered cord % POTS % Hydrocephalus % Tethered cord syndrome % Thyroid % 7

8 Fibromyalgia % Major depressive disorder % Intracranial hypertension % Spina bifida occulta % Cervical instability % Chronic fatigue % GERD % ICP % Seizure disorder % Asthma % Sensory processing disorder % Restless leg syndrome % TMJ % Low blood sugar % High blood pressure % Mast cell activation disorder % TMD % Pseudotumor cerebri % Cervicomedullary syndrome % Kyphotic brain stem % Myofascial pain syndrome % Anxiety % Asthma % Kidney stones % Hyperlipidemia % Hyperkalemia % Osteogenesis imperfecta % Scarlet fever % Rocky Mountain spotted fever % 8

9 WORKS CITED James Knierim, Ph.D., Department of Neuroscience, The Johns Hopkins University. Overview: Functions of the Cerebellum. n.d < Jeffrey Greenfield, Ph.D., M.D. Weill Cornell Brain and Spine Center. November October 2013 < 9