Chiari Malformation questions

[anni99]

I have a chiari type 1 malformation and hydromyelia.  I have several blackouts a day, dizzy spells that last for days and constant neck pain and headaches.  My neurosurgeon told me that I was at risk for a CSF leak because of the size of the syrinx in my thorasic spinal chord.  I am having cold pains in my neck and lower back, headaches that I can't get rid of but get better when I lay down and I am loosing feeling in my feet when I sit or stand for to long.  Its hard enough to get my balance without being numb from the week down.  I am also noticing that I am urinating much more frequently and have a small appetite now.  I am suppose to see my neuro in a little over a month and I am having a difficult time reaching him to figure out if any of this is a big deal.  All of it together feels like alot that has come on in the last few weeks but I don't know....
When I wake up in the morning if I can wiggle my toes its a good day and I think the more information I have the better off I will be.  THank you for your time.

[dr_simran]

Cerebrospinal fluid depletion may be caused by a leak, a shunt, inadequate production or too rapid absorption.
Symptoms commonly include headaches, which are more severe in the upright position and are alleviated by supine or head-lowered below chest(Trendelenburg) positioning. There may also be nausea and tinnitus. Horizontal diplopia, change in hearing, tinnitus, blurring of vision, facial numbness and upper limb radicular symptoms (tingling) may occur. These symptoms are nonspecific as they are commonly encountered in migraine and post-traumatic headache.
Unless investigations are done it is difficult to diagnose the CSF leak.
Refer http://www.dizziness-and-balance.com/disorders/central/csf-leak.html
Best

[anni99]

Thank you for all of the information.  I am just trying to do the best I can everyday and I know that the next month is going to go quickly.  It is very helpful to me to know more about what is normal for this.  How would I know if I was having a spinal fluid leak??  I feel like alot of the back pain is changing.  There are more hot and cold pains, burning in my neck and headpain that I cannot get rid of.  I am stumbling around more in the last four or five weeks and the shifting of the pain in my head is so quick sometimes it makes me sick to my stomach.  Thank you for all of your help!! It is much appreciated.

[dr_simran]

Hello Dear,
Many people with the Chiari I Malformation experience no symptoms. When symptoms are present, they usually do not appear until adolescence or early adulthood, but can occasionally be seen in young children. The majority of patients complain of severe head and neck pain. Headaches are often accentuated by coughing, sneezing or straining. Patients may complain of dizziness, vertigo, disequilibrium, muscle weakness or balance problems. Often fine motor skills and hand coordination will be affected.
Vision problems can also occur. Some patients experience blurred or double vision, difficulty in tracking objects or a hypersensitivity to bright lights. Physical examination may reveal nystagmus (involuntary eye movements). Other symptoms include tinnitus (buzzing or ringing in the ear), hearing loss or vocal cord paralysis. Patients may have difficulty swallowing, frequent gagging and choking and, in some cases, sleep apnea may be present.
Chiari type 1 malformation and hydromyelia present with various combinations of different symptoms. Symptoms tend to develop slowly, although sudden onset may occur with coughing and straining. Some common symptoms include: loss of sensitivity, especially to hot and cold, muscle weakness and spasticity, motor impairment, loss of bowel and bladder control, as well as osteoporosis and scoliosis. The majority of patients suffer from headaches and chronic pain.
Although Syringomyelia was first described over 400 years ago, very little research was performed and as a result little was known about the disorder. Only recently, with the advent of MRI and the dramatic rise in diagnosed cases, have significant advancements been made.
Treatment is aimed at correcting the condition that allowed the syrinx to form, if possible. In cases involving a Chiari Malformation, the main goal of surgery is to provide more space for the cerebellum at the base of the skull and upper cervical spine. This often results in a flattening or disappearance of the syrinx as the normal flow of cerebrospinal fluid is restored. In some cases it may be necessary to insert a shunt into the cavity, rerouting the cerebrospinal fluid from the spinal cord. A successful surgery will stabilize the condition and perhaps gain a modest improvement in symptoms, but over time surgery is not always successful and multiple surgeries may be necessary.
Since the natural history of SM is poorly understood, a conservative approach may be recommended. When surgery is not yet advised, patients should be carefully monitored by a neurologist or neurosurgeon. Periodic MRI's and physical evaluations should be scheduled at the recommendation of a qualified physician.
Refer http://www.hmc.psu.edu/pediatricneurosurgery/services/chiari.htm
Best