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DrRussMD, Board Certified MD
Category: Medical
Satisfied Customers: 65671
Experience:  Board certified Internal medicine and Integrative medicine. Many years of experience all areas.
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my names simon, i honestly believe i have a csf leak either

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my names simon, i honestly believe i have a csf leak either from my spine,or head,i have been in and out of hospitals for the last 2 years,and have been complaining of walking like im drunk,horrible sensations when i lie in different positions,i have blury vision,my scans show i have low lying tonsils,and back part of my brain is millimetres thinner than should be,when i lie flat my head feels like full of water, but it has been misdiagnosed as a syciatric problem, or ptsd,when obviously i know my own body better than anyone.i have a disfunctional family,and im isolated on my own and when i go to appointments on my own,people dont know how to take me, and i struggle to explain.i have differnt levels of conciousness,and if i drink water or have food,bend in diff possisions it comes up,projectile,i have been given anti sickness,dioreah medication,could go on but im just passed back and forth,i have had it so long that im cold all the time and and have dislike to bright lights and sound,and even now typing this im completly terrified for myself,because,no one wants to know me,or assist me
Hello from JA
I see nothing in your story that indicates a csf leak.

let me ask you, have you had a spinal tap?
Customer: replied 5 years ago.


Where there any findings?
Customer: replied 5 years ago.

i was at my dads house where i really go,and i keep going there and saying please there is something seriously wrong with me,while at my dads his wife my step mum,took me to stoke manderville,becasue thought i had meningitus as a rash came up on my arm,so they done a lumber puncture,but didnt take the pressure,when they done the lumber puncture,i got seriously ill,

So it was only after the lumbar puncture you have had all these symptoms....but you had soime symptoms before that correct?
When was the lumbar puncture.
Customer: replied 5 years ago.

the lumber puncture was done in,november 2012,but i have been complaining of horrible symptoms since sept 2010,iv been passed back and fourth,no pressure was monitered,but when they done the lumber puncture,i was out of it,

I do not think this is a csf leak
Your doctors have said you have
anything else?
Customer: replied 5 years ago.

i know ptsd,i know depression,i know how trauma can effect you,

but can you tell me when i went to queen square in london,and took the same scans that i have had done in milton keynes.with me,the neuro surgeon said, you have low lying tonsils,and back part is thinner,i also have an anatomical varient called cavum septum pellecidium.but when they put the die in me and done a scan through the asteria fossa it apperently showed no defects,but even when i went for the scan i said to them its not leaking now,so when you do it it wont show up.but they insisted it would.


That is a variant finding in the cerebellum that a lot of people have. It is calle a chiari malformation and is not necessarily a problem.

I don't think you have a csf leak at all.

The neurologist does not think you have a neruological concern, is that correct?
Customer: replied 5 years ago.

no not correct,chiari malformation,is something that i never had before i have never ever had these problems,so what can cause,these symptoms,when i put low lying tonsils on google and look at the symptoms,and other people thats what i get,blury vision,ballance problems,my eyes my taste my hearing vertigo,feeling of being drunk when i walk when im not,loss of sensations in my legs when i lie down,blood rushes to my head somtimes,and i just have altered levels of conciousness.and seams like when i try go out,i just start staggering then i end up almost collapsin and that when the back part of my head really really hurts almost somtimes like i have a screwdriver in it.right at the back.

What does your nuerologist say???
Customer: replied 5 years ago.

thats the thing,i have been passed piller to post,and getting no where,i have neurology appointments made,then cancelled,its completly misdiagnosed,i have been, complaining of serios heavy head when i lie down and wake up it feels like my head is full of water,my face swells up, i get lost in familular places, when i try ride a bike all my judgements is out i fall off , when they done the recent lumber puncture,at queen square they didnt take my opening pressure, or surely they could of taken the sample out and could the sample of csf be tested for neurological problems?

Yes mainly infection
What scan did you have, CT?
Customer: replied 5 years ago.

so i dont understand,why when they done the test,they did not take the opening pressure,and why they didnt test for nerve damage,surely from testing the csf they can detect nerve damage,optic nerve,taste,facial nerv,i feel helpless dr.i feel i used have a slow leak,but now its severe,im totaly confused.


the scan that i had done was,fine cut ct scan through the asteria fossa,

but i dont know if its leaking from spine or head.or what.

I still need no evidence of a leak.
They can repeat the spinal tap, but that is not what you need.
You need an MRI as a CT will not rule out some tumors and other structural problems, and can not rule out MS.

See the neurologist and ask for an MRI.

OK. If you have further questions or details, use reply to expert.
Otherwise please choose a positive rating [smiley face or accept]. But, still come back if you need to…think of something later, etc. Bonuses are appreciated.
Customer: replied 5 years ago.

sorry what is your profession,i thought everyone on here was neurologists? i didnt look at your profile

I am an internist and we test in neurology as well.
So I have neurology training as well.
Your question was in neurology first and no one took the question.
So it was directed to me.

OK. If you have further questions or details, use reply to expert.
Otherwise please choose a positive rating [smiley face or accept]. But, still come back if you need to…think of something later, etc. Bonuses are appreciated.
DrRussMD and other Medical Specialists are ready to help you
Customer: replied 5 years ago.

how do i give you a smily face,but also speak to a neurologist,becuase im on benefits and im in this situation,but only i can get myself out of i need the right person

Do the smiley face, and I will send the link to neurology even though it is there,,,,I will alert someone to it.
Customer: replied 5 years ago.

how do i ask another question or use this service


You can start a new question in neurology
I can send this link over again...even though it is there.. as well, but it is better to just start a new question, select neurology.

A new question might alert experts faster.