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Old 07-02-2008, 11:57 AM #11
dizzie lizzy dizzie lizzy is offline
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dizzie lizzy dizzie lizzy is offline
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Default Many Drs many tests

Jaime,

Thanks for the reply. I have been to see 10 Specialists in all so far, have had 4 MRIs, 6 rounds of blood tests, an EEG, a CT Scan and a sonogram- none of which turned up anything besides some minor herniation in the C4-5 and C5-6 ad silent sinus disease. I've fixed the discs with PT long ago and am heading into surgery for the sinuses even though everyone agrees that there is a slim chance that that will solve all of my problems. Since my first Neuro seems to not know what to do besides ordering the next big expensive test and the 2nd one suggested I try anti-depressants (even though the Psych disagrees), I am doing a lot of research on my own. I have headaches but not constantly. In fact nothing is constant which is part of what seems to confound. My symptoms that come and go are dizziness, generalized muscle weakness, coordination & dexterity problems, memory issues and stabbing headaches in various places on my head (always in one spot at a time). Hopefully the cultures they run on my sinus matter will shed some light. I am starting to get really frustrated. sigh

Quote:
Originally Posted by Jaime_S View Post
Hi Lizzy,
My symptoms with the arachnoid cyst were mostly constant headaches, pressure feeling in the head, dizziness, weakness, vision and balance problems, but mostly I had a migraine-like headache that never went away. The arachnoid cyst was eventually diagnosed with an MRI. A recent MRI has seemed to rule out hydrocephalus, thankfully...
I haven't really been much help, but I hope you are able to find some answers soon. I think you need to find the right doctor, preferrably a good neurosurgeon, and to have an MRI.
~Jaime~
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Old 07-31-2008, 10:21 PM #12
Maile Maile is offline
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I am new and have the same poster fossa cyst 5.6 cm. I just found this and wanted to reply. My cysts shifts causing Spinal fluied blockage, When I am walking or cleaning, my symptoms for this is:
Head pressure, dizziness, a feeling of fluid behind my ears while not being able to speak clearly, I become naselly when this happen. its almost like you are talking with your ears under water. spinal pain and lower back pain which is caused by not enough fluid flowing all the way down your spine. after the episode is over you are left with sharp pains in your head because the fluid that built up has gone down and you head has to reajust.
does this sound like you?
Maile
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Old 08-01-2008, 12:59 PM #13
dizzie lizzy dizzie lizzy is offline
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Quote:
Originally Posted by Maile View Post
I am new and have the same poster fossa cyst 5.6 cm. I just found this and wanted to reply. My cysts shifts causing Spinal fluied blockage, When I am walking or cleaning, my symptoms for this is:
Head pressure, dizziness, a feeling of fluid behind my ears while not being able to speak clearly, I become naselly when this happen. its almost like you are talking with your ears under water. spinal pain and lower back pain which is caused by not enough fluid flowing all the way down your spine. after the episode is over you are left with sharp pains in your head because the fluid that built up has gone down and you head has to reajust.
does this sound like you?
Maile
My symptoms do seem to come and go which is part of what has confused the doctors. Will have to write more later- sorry.
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Old 02-06-2009, 03:10 AM #14
jeff179120 jeff179120 is offline
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jeff179120 jeff179120 is offline
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Quote:
Originally Posted by Jaime_S View Post
Hi, I was just wondering what the main symptoms of hydrocephalus were for someone who might be developing it later in life? It's a bit confusing trying to find information, when most people developed hydro from birth, or at a young age. I know that many of you here have lived with it all your life, and I'm sure that must be difficult.
Anyway...I had surgery for an Arachnoid Cyst over 10 years ago, (age 30) I had cyst fenestration and not a shunt. I was told the the CSF flow was blocked by the cyst, but when it was removed, they said it was normal again. I had an MRI 2 years ago, and they say the CSF flow was normal then, and the cyst hadn't regrown. But over the last few months, I've felt increased pressure in the back of my head (where the cyst had been), and increased dizziness and some pain. I was diagnosed with Occipital Neuralgia in late '06, and now the pain is mostly controlled by nerve blocks, but the pressure feeling and the constant dizziness has got worse recently. My Neurologist doesn't think it's in the head this time, so he's sending me for balance tests, because he thinks it is inner ear problems now. I asked for an MRI, but he wasn't going to do one until after I've had these balance tests.
So, can CSF flows/build-up show on an MRI? Or are there other tests for that? I hope it's something simple like inner-ear problems, but I don't have all the symptoms for that, just the pressure and dizziness...

~Jaime~
I was not diagnosed with hydrocephalus until age 41. I found out when I was driving a company car down a secondary highway and the road started to spin. I was covering a school board meeting out of town as a reporter. I nursed the car to the side of the road and waited. A few minutes later, a trustee from the same meeting came and took me to hospital. I was flown out by air ambulance to Toronto where hydrocephalus was discovered. The symptoms at the time, aside from the vertigo and dizziness, were headaches, balance problems and a general feeling of mailaise. I balked at having a shunt put in the first time, but when I returned from Toronto, I only had to go back a month later. At that time, the situation was so bad, that I passed out at the Lockwood Clinic. I was rushed to Toronto St. Michael's for emergency surgery and I'm still alive to tell about it some 11 years later. The dizziness and vertigo were the first symptoms for me, followed by extreme headaches and mild bladder problems. Hope this helps. Jeff, Kirkland Lake, Ont. Canada
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Old 02-06-2009, 06:10 AM #15
jadiee-x jadiee-x is offline
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Hi i have an arachnoid cyst, but luckily mine is treated by a shunt.
When ive had symptoms of shunt malfunctions, nothing has veer showed up by scans or shunt series tests or shunt taps.
I have my shunt fully revised twice now and both times the symptoms were the same but no test came back with evidence of malfunction or intercranial pressure.

The only way they have found out was by actually drilling into my head in surgery and that when, on both occassions, fluid has flown across the theatre in a pulsing action.

My symptoms have always consisted of,
A really bad headache which lingers early hours of the morning.
Buzzing in the ears before and during the headache.
Sore eyes.
Vomiting.
Irritability.

&& in my last revision was was 3 months ago, i presented a cough. A cough my mum recognised from when i had my first revision, thats when she knew that something was up.

From my other experiences i didnt have the cough, but on the two occassions where i went into a coma, i had the same cough.

Im not sure whether the symptoms would be the same or not for you, but just giving you an idea form my experiences.

Good luck and hope you find an answer soon =)
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Old 02-18-2009, 10:07 PM #16
jnnym21 jnnym21 is offline
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my symptoms have been horrible headache vomiting and slight fever and sensitivity to light. Had it for 18 years now. Grantid mines do to a blocked ventricle. They opened it up 2 months ago and been shunt free since.
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