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Brainmaster
Brainmaster, Board Certified MD
Category: Neurology
Satisfied Customers: 58
Experience:  ABPN certified. 6 years of outpatient general neurology practice experience. No malpractice cases
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Im a 28 year old female and a year ago i woke up with significant

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Im a 28 year old female and a year ago i woke up with significant fluid dripping in my throat and horrible head and neck pain, then dizziness came and some other symptoms. I detiorated over the next week and was diagnosed with encephalitis. my symptoms never got better. I was told i had an inner ear csf leak. Had inner ear surgery, oval and round window were patched, still no relief. I had a myelogram done and what a horrible experience. Omnipague was used as soon as the dye was injected i had shooting pain all over my back, but the worse was my head. I started screaming, i thought i had a brain bleed because the pain was like no other. I had severe muscle twitching with im sure were seizures. Since then ive been wheelchair bound. i have severe head pressure stiff neck etc. I am scheduled tomorrow for another one and am terrified. The last experience landed me in the hospital for 2 weeks and i was told i had checmical meningitis. Other than water solubale iodine based dyes are there any other dyes used for myelograms that dont have iodine. The docs are looking for a csf leak, which i think is a waste beause im positive the leak is in my head not spine, but my neurologist insists.
Submitted: 3 years ago.
Category: Neurology
Expert:  Brainmaster replied 3 years ago.

hi

sorry to hear your story.

please indicate specific questions you have because I can write a textbook to explain your case.

thank you

brainmaster

Customer: replied 3 years ago.
sorry for the huge delay, i was away from home and i couldnt log in from my phone. I had my myelogram today, they did cervical through lumbar, but didnt scan my head. I know this sounds crazy. i feel like there is a hole way back in my throat, by the soft palate and i have significant fluid dripping down my throat and fluid noises in my ears. i get palatal myclonus also. im 100 percent sure its csf. but where? it doesnt leak from my nose. If i had a leak in the cribriform, would it leak out the pharynx? The only thing i can think of is the posterior fossa draining through the eustachian tube. i am willing to undergo exploratory craniotomy, but no nurusurgeon will touch me because they dont know where the csf leak is? to make matters worse since ive been bedridden for 17 months, i have significant muscle atrophy and decontioning. If i can get this csf leak fixed, do you think its possible with the right rehab, that i will recover
Expert:  Brainmaster replied 3 years ago.

hi there

no one will do exploratory craniotomy....

palatal myolconus is a very specific condition and as far as i remember there is only several conditions where it is present - one of the most common is stroke or other pathology affecting brainstem, yet it should not cause CSF leak, but may be responsible for those muscle twitching you were referring to. Previously described chemical meningitis with scarring of the dura around the pons may put "tension" on those fine neurological structures and produce SOME of your symptoms.

in reference to muscle atrophy and deconditioning - need to figure out if it is pure deconditioning versus motor neuron disease - EMG may shed some light on it (whoever does it - make sure they are neuromuscular specialists and they do tongue emg as well).

If for one second we disregard the CSF leak possibility - meningitis with secondary scarring and adhesions would explain majority of your symptoms.

If SCF leak is dominant - one would expect postural headaches. I have a patient with CSF leak for over 30 years (post pituitary surgery) - he is in his 80s and functions very well (it all depends if amount of leakage is more than amount you produce) and postural headache differentiates between them.

 

Customer: replied 3 years ago.
I honestly beleive I have some type of tegmen defect or a leak related to a skull base defect hence the drainage down the eustachian tube. my past opening spinal tap pressures have been 18, 15, 15, 23, and 19 with my recent myelogram. We have a family history of chiari malformation and ehlers danlos. I was told my mri was normal, but am wondering if i would benefit from a fonar upright mri, because iam fibe laying down, but the second i stand up, i feel like my brain is being pushed down, my heart rate goes sky high and i get the palatal myclonus. my theory was thatr i had high csf pressure, hence the migraines for years and eventually sprung a csf leak. I get very ill when it rains, which leads me to beleive its pressure related. I think the muscle atrophy is due to the fact i havent been able to ambulate. I dont understand i was so healthy. Once i had a blood patch and felt much releif but it only lasted about a week than the symptoms began again. thank you for your input dr
Expert:  Brainmaster replied 3 years ago.

Upright MRI will only show meningeal enhancement (false positive if you do it close to LP/myelogram date) wait a little longer... unfortunately, it will enhance meninges diffusely - still will no idea where the leak comes from.

 

good luck

Brainmaster

Brainmaster, Board Certified MD
Category: Neurology
Satisfied Customers: 58
Experience: ABPN certified. 6 years of outpatient general neurology practice experience. No malpractice cases
Brainmaster and other Neurology Specialists are ready to help you

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