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Please help, in really bad shape. Leaking 11 months

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Old 11-27-2015, 04:38 PM   #1
Leakman
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Default Please help, in really bad shape. Leaking 11 months

I am looking for any advice or help and answers to a couple questions regarding a CSF leak following sinus surgery 11 months ago. I noticed problems with my vision in my left eye immediately upon waking from surgery... Double vision,
blurry vision (all in left eye) and problems bringing both eyes together; convergence problem. Within a day or two I started to have very extreme head pressure, feeling like the back of my skull was being compressed 24-7 and very nauseous. I also began to notice a very unusual intermittent type of back drip that has a metallic taste and is nothing like any of the backdrips I have ever had from sinus problems. I immediately suspected a leak, had several visits to the ER and several scans (MRI & CT scans) which failed to show the leak. However MRI of neck shows enhancement and edema on C3-C6, which is also where I have continual pain, tightness, etc. It seems the problem runs from the base of my neck on left side all the way up into my left ear and left eye. Pressure seems completely off on the side and head feels like it's gonna explode.

Beta testing was done but negative however I was not surprised because no matter now hard I tried to get the drip out through nose, leaning over, it only goes down back of throat. It's quite disturbing because the drip is really far into base of skull, back by my neck and once the drip starts it's really rapid like a faucet leak, not just a few drops.

I have contined to suffer now for 11 months to the point where I feel like I'm gonna have a seizure or go into a coma. I'm tremoring all day and night. I would say my vision is about 75% reduced... All dim and my eyes are not moving correctly or focusing at all. I feel like my pressure is really low. When I swallow I am basically hitting the back of my skull. It's that tight and compressed. Most days I am bed ridden for about 90% of the day. The more I move around the worse the head pressure gets.

I did do a RadioNuclied Cistenogram last month which failed to show the leak but my opening pressure on the tap was 7. But now my doc has given up on me since the test was negative. I am really at all loss and Honestly in severe pain. I am absolutely sure I am leaking, I just don't know where. I think it might be into my left ear, as I have continued to have fluid build up behind ear and lots of popping of that left ear. But really I don't know.

I have one doc that said may do a CT meylogram but it will not be until late January and I don't know how to make it that long in This much pain. I keep getting nasty infections that keep Coming back too at one point was told I may have a head/neck infection, drenching night sweats and high fever but was only given IV for one day in ER and then take home oral antibotics. I can tell Ifections are related to having a defect somehere and bacterai/fungus keeps leaking in.

My question is this... I thought a ct meylogram was best for a leak in the spine. Does this also cover the ethmoids and areas above the neck? I want to Make sure the next test is done correctly. When I did the radionuclide... Nothing was done to promote the leak, just laying flat and scanned with a gamma camera. I think my pressure is so low I can not even leak unless the pressure is high enough. Is this possible or am I talking out of my ***?

I am having a hard time understanding the differences between meylogram and cistenogram and also what is better... CT Cisteronagram? Ct myelogram? Or MR cistenogram or MR mylogram? Can anyone tell me what maybe the best chance to find this? As maybe some leakers have experienced, my docs are not too helpful and not believing of the leak despite the enhancement of MRI, verified convergence problem of eyes by more than one opthomalogist and all my symptoms of 24-7 head pressure and compression.

I am also feeling like I have memory problems and dementia now too. Please any help would be greatly appreciated. I feel a lot like I'm not gonna make it and hopeless. Thank you.
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Old 01-15-2016, 07:49 PM   #2
david01
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Did you find relief yet?



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Old 04-22-2016, 09:40 PM   #3
junie9
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To Leakman-
I've new to this CSF site. I've spent the afternoon and evening reading the Thread. Your letter is the very last, and the only one that sounds anything like what I've been going through for nearly a year. I had my left shoulder replaced March 17th, 2015 and the six weeks later these symptoms came - slight pain in the left temple above the ear, liquid dripping down the back of the upper throat, puffy left cheek and droopy left eyelid and a woozy head and lack of balance. Had PT for left shoulder and PT for balance -walking. It's been almost a year, ENT and ENT Neurologist, Ophthalmologist and Ophthalmologist Neurologist and two Neurologists and more. I do have a benign tumor on the left in that area but two MRIs show no growth. The above symptoms have gotten progressively worse and where these attacks were a couple times a week, now it's every day--sometimes with more than the woozy head -- with a bad ache in the nape of the neck. The only relief is to lie down on the bed for a couple hours. The specialists say it can't be CSF because it doesn't run out my nose. The specialists here in Glens Falls and Albany NY say it can't be CSF. I had a lumbar punch done and my fluid was low -- 5. There must be a leak somewhere in my head.
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Old 04-24-2016, 06:07 PM   #4
david01
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Quote:
Originally Posted by junie9 View Post
To Leakman-

I've new to this CSF site. I've spent the afternoon and evening reading the Thread. Your letter is the very last, and the only one that sounds anything like what I've been going through for nearly a year. I had my left shoulder replaced March 17th, 2015 and the six weeks later these symptoms came - slight pain in the left temple above the ear, liquid dripping down the back of the upper throat, puffy left cheek and droopy left eyelid and a woozy head and lack of balance. Had PT for left shoulder and PT for balance -walking. It's been almost a year, ENT and ENT Neurologist, Ophthalmologist and Ophthalmologist Neurologist and two Neurologists and more. I do have a benign tumor on the left in that area but two MRIs show no growth. The above symptoms have gotten progressively worse and where these attacks were a couple times a week, now it's every day--sometimes with more than the woozy head -- with a bad ache in the nape of the neck. The only relief is to lie down on the bed for a couple hours. The specialists say it can't be CSF because it doesn't run out my nose. The specialists here in Glens Falls and Albany NY say it can't be CSF. I had a lumbar punch done and my fluid was low -- 5. There must be a leak somewhere in my head.


You should start a new post. Maybe under the new member section or even on this one.
I understand what you're going through. I've been battling a leak for a while. Good luck
Feel free to PM me if you have any questions
David
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