Too Much Spinal Fluid In My Skull

I have just been to a radiologist - to collect an old report - of a CT scan done of my brain about 12 years ago. I am very lucky that modern technology means things like medical reports, files or information can be stored for so long - even the receptionist person was surprised it was still in their system.

This report is important, because I have in the last few months, had another CT scan, and then an MRI. I have, it seems, Cerebral Spinal Fluid (CFS) collecting in my head where it should not be. One place it is in, is the "sella" - which is sort of a cup-chaped bone at the base of the brain (kind of - hard to explain, especially as I am not a doctor!!).

This cup shaped bone contains the pituitary gland - which is normally very small - pea sized, anyway. But the pituitary is very important - a hormonal control centre that controls or responds to other body signals and does things like regulate both male and female sex hormones (so - for women it regulates ovulation, periods etc). The pituitary also helps regulate thyroid function, kidney function - or at least salt regulation in the body via the kidneys, cortisol - which I believe is linked to adrenaline production and also blood pressure (as is sodium and other electrolyte balances and fluid balance....a whole ton of stuff. (Anyone who can explain it better - feel free - LOL!!)

Covering the bony sella, is a membrane. The only "hole" in the membrane,  is small & to allow blood vessels to enter the sella, and a *stalk* that links the pituitary to another part of the brain - the hypothalamus. (I know - it all sounds so complicated and this is in layman's talk!)

Well, my membrane covering is torn - damaged.
Sometimes it can be missing from birth.
Sometimes it can be damaged from surgery or radiotherapy (say cos the person had a brain tumor needing radiotherapy. 
Sometimes it can occur from severe head trauma - which is the catagory my Dr thinks I am in, because I was in a terribly abusive marriage (but too young, stupid & naive to leave - with my 7 children, no money, no friends and no family.....and this is just fact, not "poor me").

So now, CFS has entered this sella, and has pushed my pituitary flat to the base of the "bony cup" much that my pituitary is really just a remnant. It is functioning, but not very well. And I have to have a ton of blood test (again) to check what is and isn't working.

The report I got today - the old one from 12 years ago, was done to check this sella especially, as I had symptoms to make the Dr want to check this area out. And back then - it was NORMAL. So this "proves" I was not born with a damaged sella covering (membrane), and I have not had surgery or radiotherapy etc.

All this is good to the point that it shows the most likely reason for the damaged covering. But it doesn't fix it and it doesn't explain or stop the extra CFS being in my head. It is also surrounding my brain (as it does anyway) but there is more than normal. And what I have the worst from this - at the moment, is massive headaches.....and they are worse if I am lying down or bend down so my head is the fluid rushes up to my brain. I feel like I will vomit and/or pass out.

I am also having co-ordination problems, and visual problems. Not super-severe - yet - but enough so I feel like my eyesight has *aged* about 20 years (it used to be fine) and I sometimes literally stumble and fumble and fall over. It is so embarassing.

I am scared. I don't know what the treatment is for the extra fluid.
For the pituitary, it is apparently working out which hormones are not being made properly, or enough of, and replacing them with medication. Except it is so fine-tuned, I then need a ton of blood tests often to make sure I have enough, or not too much, of the hormones. AND, some replacements are not covered by insurance, and if you want it, you have to pay for it. Human Growth Hormone is one....and mine is low. But I either live with it being too low, or I find $10,000 a YEAR for - I think daily injections (or weekly - not sure) to replace it. And that is dumb cos I couldn't afford it and even if I could - it only works while you have the injections. So....if I managed to pay for a year's treatment, then for that year my HGh level would be "normal". As soon as you stop the treatment, it goes back to being too low.

It is covered for kids with low HGh - because they need to have it to not be - sort of dwarf-like in height, and for other reasons associated with proper groeth - not just height.
But it is not covered for adults.

Anyhow, like I said, I mainly get scared, because I don't know what the next steps are, or what my blood tests showed, or what treatments I probably need and what is and isn't covered by insurance.

I know I can't live with these headaches - I wake up in the morning with them - sometimes even in the night - and I am on strong pain killers right now but that can't go on as the stuff is very addictive and not good for other parts of your body systems to be on it too long. I guess....I am just scared.

I see my Dr in less than 2 weeks and the closer the appointment gets, the more scared I get. I know this doesn't help anything - may even make the headaches worse - stress or tension headaches on top of the pressure ones. But it is so hard not to feel nervous!! I try. And writing this out has sort of helped. It is like I have "put it out there"....shared the fear, and that sort of lessens it a bit - like it isn't just some "thing" or "secret" I carry around all alone.

Anyhow, I feel I have now written half a novel, so I will end *My Story* here. Thanks you to anyone who reads it through - that alone is comforting.


OzAngel OzAngel
36-40, F
7 Responses Nov 3, 2009

It feels like if I move my head fast it has to catch up with me....very bad when I bend over. Another thing that I haven't see in here is when I wake up in the AM, depending on how I was sleeping will be all puffed up, looks like it is swollen, if I was sleeping in my back, I wake up with a real bad bead ache that will lighten up some as the day goes on. Any ideas? One month ago I had some head trauma.

My mom has the same thing shes had headaches for about 8 years the doctors have tryed shunts a bunch of times but she contracted meningetis when they put the shunts in the last shunt she almost passed away this last 8 years have been hard watching her get weak but be strong for us at the same time she is now legally blind in her right eye and does not take pain killers .... i just wish she didnt have pain anymore:( she is my hero the strongest person i know

My five year old niece has just been diagnosed with this also. They have not completed their testing but did drain the fluid from her brain. It is very upsetting. I hope over the years that they have found a solution for you. I am sorry that your healthcare does not pay for some of your treatment, hopefully you appealed their decision. Good luck to you, to me and my niece, and all those suffering from this.

We just returned home from the mayo clinic in Jacksonville, fl and my husband has the same thing. We will be returning hopefully in a few weeks for a consultation with a surgeon for a possible shunt placement. Sure hope it works. His quality of life has diminished because of all the dizziness. <br />
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Hope you find the relief you are looking for.

i have the same thing u got.. and it took the DR a long time to figure out what was wrong with me.. but when they did they started me on some medication and and did the CFS and they want the pressure in spinal fluind under 20 and mine was 36 so that was about the time they figure out what i had.. too much spinal fluid in my brain.. and i had similar symptoms as u have.. headaches, pressure in my head, dissy, almost lost my eye sight, i could not eat and my blood pressure was so low the nurses could not even belive i was standing up.. but a week after the DR did the CFS and with medication i was feeling good.. but there he could not be sure it would not come back and now it has... and its only been 21/12 months..

*massages your temples gently to ease the pain*<br />
Hope the docs can help you sooner rather than later.

I think they put in a shunt to drain fluid from the brain to relive pressure on the brain.Dont be scared though, doctors do AMAZING things these days. If your stress is adding to your headaches u should try magnesium capsules, (one a day)they really work for me as when Im stressed I clench my teeth,and I even grind them in my sleep... headaches are the worst!