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Old 08-24-2009, 11:31 AM
CSFChallenged CSFChallenged is offline
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Join Date: Oct 2006
Location: midwest
Posts: 182

Jade, I usually post on the csf leakers board but have now had high pressure for some time, and stumbled across your post and thought I'd offer my help. You really do need to know if your symptoms are from high intracranial pressure or from postural hypotension(low blood pressure) as the high ICP is more serious as you know. It sounds like you may have had this off and on since you were 3?? so maybe it is related to your csf pressure if you have had hydro since then. On the other hand if you have been chronically treated with diuretics and have always been kept on the dry side because of hydro, it could also be chronic low blood pressure.

If your symptoms occur with any rapid head movement or turning of your head to the side, leaning forward or when you stand up rapidly, and is accompanied by increased pressure feeling in your head then it is more likely high CSF pressure. Gray outs are extremely common in hich ICP, and are formally called "Transient Visual Obscurations." With high CSF pressure, one can get what is called a plateau wave or slightly higher ramping up of CSF pressure which causes the visual symptoms/pressure on the back of optic nerve. It usually looks like a "gray fuzzing out" from the edges with a tunnel of vision left in the center. Sometimes you lose the central vision too, and then takes a few seconds for it to come back. It resolves more quickly than a blackout from a drop in blood pressure. Again, it is also usually accompanied by increased head pressure which dissipates just as quickly as it came on, but you still have to grab on to something to stay upright.

If it is from low blood pressure, orthostatic hypotension, then your vision usually just goes more to black, and you drop when going from lying or sitting to standing. It doesn't normally occur if you are just sitting in bed and turn your head quickly. Orthostatic hypotension is really easy to diagnose, because you just need a blood pressure lying down and standing, which can be done in the doctor's office. Your family doc would not know the difference and would probably just put it off the blood pressure. Your neurosurgeon may know, but for sure a good neuro opthalmologist should know as they are skilled in this. You don't have to show papilledema to have the symptom as 10% of pts with high pressure never show papilledema(I am one of those). Some neuros think this is controversial, but there are enough patients with proven high pressure and no papilledema to have it be published over and over again.
I have had both a drop in BP from severe dehydration, and TVO's from my high ICP (I'm currently on 2500 diamox).

So, to be safe, since you just had surgery, you should let your doc know.

Hope this helps, I know I don't know you, but I do have a medical background and wanted you to be aware that both options were equally possible and couldn't be determined without good medical follow up. I know shunts can be very tricky and whether you have a new one, revision, or completely unrelated brain surgery, I would want it to go well for you. Good Luck and take care.

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Old 08-24-2009, 12:54 PM
1Lily 1Lily is offline
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Join Date: Oct 2007
Location: California
Posts: 1,062

Wow - thank you for educating us on this - I get them too, and will pay attention to it more now that you have posted this. I know this is no substitute for the advice of my personal ns, yada yada yada, but you have taught us all by taking the time to post this. Thank you,
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Old 08-24-2009, 02:20 PM
jadiee-x jadiee-x is offline
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Join Date: Oct 2008
Location: Surrey, UK.
Posts: 226

Hi CSFC thank you very much for that info, very detailed.
Ive never been able to describe the vision greying out, but blimey what you said about tunnelling, is SPOT ON. And i will certainly be using that term the next time i mention it to the NS.
I cant really turn my head fast to the side, simply because its like a huge THUD to do so, which will leave me with a headache, but i will certainly keep it in mind should i turn my head quickly not realising it, but i dont think i have experienced it in that way

I went to see my NS today, just got back.
My main objective there was for him to see my assumed 'stitch granuloma', as its about as big as the end of a pencil and as deep as the skull, but overnight it feels with gunk, and over the past 4/5 days when a certain area around it is ever so slightly pushed, it pushes out pus. The hole has been there for about a month now and shows no sign in stopping gunking, 2 courses of augmentin antibiotics havent helped either.
This was the first time my actual neurosurgeon has seen it, and he didnt seem impressed and immediately called my ward to see if there was a bed available to admit me for a day case to be seen by plastic surgeons and also to have another CT scan done and xray done. He seems to think they it will need cutting open and cleaning out and stitching back up again, so as soon as a bed becomes available this is the plan.

I swear i live in this place, im 18 in less than 2 months...i think its about time i was moved onto adult care.

Must add the highlight of my day, was my stern strict NS calling me 'Bunny' LOL
[SIZE="4"][COLOR="DeepSkyBlue"] <img border=0 alt="free glitter text and family website at" src="">
18 years old, currently treated for an arachnoid cyst and hydrocephalus with a very low pressure shunt.
15 brain surgeries since Sep 08, and 2 prior then.
Treated at Great Ormond Street Hospital.
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Old 08-24-2009, 04:31 PM
DystoniaGal DystoniaGal is offline
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Join Date: Oct 2006
Location: Gainesville, FL
Posts: 396

I am so glad to see that your NS is acknowldging the seriousness in this matter. Hopefully you'll get fixed up and good to go in no time.
DYT1 positive dytonia . Dx 1989.
Deep Brain Stimuation at Shands at UF in 2003.
Hydrocephalus dx in 1/2004 due to an infection and resolved as of 4/4/08. Hydrocephalus returned and shunted 7/9/09 with OSV II,revised 8/5/09. So many CT scans I should
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