Go Back   NeuroTalk Support Groups > > >

Post CSF leak support/question

Reply
 
Thread Tools Display Modes
Old 09-10-2014, 04:44 PM   #11
jonharris86
Newly Joined
 
Join Date: Sep 2014
Posts: 1
Default Csf ?????

Following a DIY ear syringe & a 6 week long ear infection in Jan 2005, I was left with Tinnitus & fluid pressure on the left hand side of my face. It feels like fluid is constantly draining down my Eustachian tube & through my nose & throat. I sometimes also have a feeling of fluid moving around my head in the temples & at the back. Lying down helps & im at my best in the morning and as the day goes on the pressure and fluid pressure builds up. Steroid nasal sprays help & some days are better than others but at the moment its bad. I had scans (CT & MRI) some years ago in the UK which showed nothing, but then I understand they don’t always show anything & taking a nasal sample to identify the presence of CSF should have been done. None of the Doctors I saw mentioned CSF & didn’t have a clue what the problem was, only upon doing my own research did I see this & now believe this could be the problem. Does anyone have similar symptoms ?
jonharris86 is offline   Reply With Quote
Old 12-09-2014, 06:38 PM   #12
jaynemil5
New Member
 
Join Date: Nov 2014
Posts: 2
Default

I was recently diagnosed with a spinal fluid leak, had a blood patch it seemed to work in that my traumatizing headache is gone....however I have vision problems now, a full ness in my ears, lightheaded, and tingles in my head that feel like pin pricks. I fear the postural headaches are just around the corner. Can anyone comment on this, and does anyone now of an experienced doctor in Milwaukee or Vhicago that they would recomend?
jaynemil5 is offline   Reply With Quote
Old 02-28-2015, 11:35 AM   #13
Qanik1
New Member
 
Join Date: Oct 2014
Posts: 1
Default

wondering who your working with in Chicago as i am post chiari surgery and cranial instability surgery having bad csf leak and ear symptoms. Not having much luck finding a neurosurgeon experienced in the leak area? Could you PM me or respond. Thank you
Qanik1 is offline   Reply With Quote
Old 07-16-2015, 05:19 AM   #14
PurplePearl
New Member
 
Join Date: Jul 2015
Location: Newport
Posts: 1
Default

Quote:
Originally Posted by wojo View Post
I'm a 70 year-old female in relatively good health. About 1 1/2 yrs. ago I had ear infections that didn't go away with repeated treatments with antibiotics. The ENT placed a tube in my right ear. After that my right ear leaked large amounts of fluid during the night--so much that it soaked my hair and left huge spots on my pillow. After a few weeks, the ENT sucked fluid from my ear, but did not test it.

The spots on the pillow had what appeared to be a halo around them. After a month of continued leaking (which diminished somewhat over time), the ENT sent me to my neurologist who saw the tell-tale salt-looking granules in my ear. (I have a small 1/2-inch left front lobe meningioma which has been stable for years.) I have stage 3 kidney disease, so he did not want to give me an MRI with dye, so he just ordered a plain MRI which was negative. The drainage diminished over time and after a few months, the ENT removed the tube.
I continued to feel a fullness in my head. I became very sick in Dec. 2013 with acute sinus infection and fluid in my ear. After three rounds of antibiotics and two rounds of steriods, the ENT placed a tube in my right ear around the middle of February and he sucked out some fluid at that time. Immediately my ear started draining onto my pillow each night and appears worse when I have been very active during the day. I went back to the ENT a few days ago and he didn't see any fluid, but it continues to drain at night.

I generally have a bad headache when I sit up each morning. There is very little drainage during the day, but my ear constantly feels wet. Can the doctors (or me) swab the fluid in the morning and test it that way to see if it's CSF? Or what other tests short of having a spinal tap would reveal if I do have a CSF leak? Also, could the doctor have slipped when he placed the first tube and cut the lining holding the CSF? Any help anyone/advice as to my next step would be greatly appreciated. I also have the extreme fatigue, and have begun experiencing blurry vision (had eye test in Nov and all was well), and occasional dizziness when walking. I really need to know what my next step should be.
I'm new to all this but I can tell you that I was leaking CSF from my nose- especially at night or if I leaned forward. I was leaking from one nostril only, for about a week or so before the headache came that sent me to the ER. The leak was fortunate, and I mentioned it to the right doctor who suspected a CSF leak. (I also had meningitis for a second time and without the leak, treatment would have ended there.)

I was able to give two samples- one was sent for extensive testing that showed it to be CSF, the other was sent for a quicker test that was less reliable but measured the glucose level of the fluid, which came back as a perfect match for CSF. I was able to drip enough to quickly fill the bottom of a sample cup each time. I'm not sure if they need a substantial sample or if a swab can do it from the ear, but they did say I gave "plenty."

It was a clear liquid with the look, consistency and taste of tears. I know, gross, but my drip was very fast and uncontrollable.
PurplePearl is offline   Reply With Quote
Reply

Thread Tools
Display Modes

Posting Rules
You may not post new threads
You may not post replies
You may not post attachments
You may not edit your posts

BB code is On
Smilies are On
[IMG] code is On
HTML code is Off

Forum Jump

Similar Threads
Thread Thread Starter Forum Replies Last Post
Hello (UK) and post CSF leak support? baby_diver New Member Introductions 1 02-20-2013 12:10 AM
post Chairi surgery csf leak helyna Arnold Chiari Malformation & Syringomyelia 4 05-14-2012 07:56 PM
Surgery to repair CSF leak....7 weeks post op Katheryn H Arnold Chiari Malformation & Syringomyelia 0 05-14-2012 07:40 PM
post decompression leak pisha Arnold Chiari Malformation & Syringomyelia 1 05-01-2011 01:32 PM
question about son's CSF leak after spinal surgery jackie fox New Member Introductions 4 03-22-2010 09:53 AM


All times are GMT -5. The time now is 05:26 PM.
Brought to you by the fine folks who publish mental health and psychology information at Psych CentralMental Health Forums

The material on this site is for informational purposes only, and is not a substitute for medical advice, diagnosis or treatment
provided by a qualified health care provider. Always consult your doctor before trying anything you read here.


Powered by vBulletin • Copyright ©2000 - 2017, Jelsoft Enterprises Ltd.
Search Engine Optimisation provided by DragonByte SEO v2.0.31 (Lite) - vBulletin Mods & Addons Copyright © 2017 DragonByte Technologies Ltd.

All posts copyright their original authors • Community GuidelinesTerms of UsePrivacy Policy