Reply
 
Thread Tools Display Modes
Old 03-14-2007, 02:09 PM #1
jmilphoto jmilphoto is offline
New Member
 
Join Date: Mar 2007
Posts: 1
10 yr Member
jmilphoto jmilphoto is offline
New Member
 
Join Date: Mar 2007
Posts: 1
10 yr Member
Default spontaneous CSF leak

Hey! I'm new to this forum, although I've visited before. Just wanted to see if there are others who have been dealing with a CSF leak. Seems this is a rare and often misunderstood/misdiagnosed condition. I'd like to find a doctor who is familiar with spontaneous CSF leaks and how to locate them. I started having intermittent headaches about 5 yrs. ago with the classic relief when lying down, I'm now 26 yrs. old. Last summer I was able to convince my neurologist to get me tested and get a bloodpatch. It was a horrible experience, I had 5 spinal taps before the doctor reasoned that he wasn't going to get any spinal fluid. It seems that my pressure was so low that there wasn't enough to take a pressure reading. So I finally go my bloodpatch, which seemed to work for about 5 mons., until slowly the headaches came back. I was scheduled for a CT myelogram (sp?) but cancled it after mysteriously having a week pain free...weird but I'm back to the usual headaches and will hopefully have the test next week. Has anyone had a similar experience? And if so what treatment has helped? Thanks!
jmilphoto is offline   Reply With QuoteReply With Quote
Old 04-17-2007, 01:45 PM #2
wasabi wasabi is offline
Member
 
Join Date: Feb 2007
Location: California
Posts: 164
10 yr Member
wasabi wasabi is offline
Member
 
Join Date: Feb 2007
Location: California
Posts: 164
10 yr Member
Default

jmilphoto,

I do not have CFS Leak, but I am interested in nutrition. Somewhere else I read that CFS Leak may be associated with hypermobile joints. Is that something you have? If so, nutrition to support connective tissue health could be very helpful.

There are two things I would suggest that you consider. One is magnesium supplementation. I am taking Ionic-Fizz Magnesium Plus. I find that it is very effective. The other is chicken soup made with plenty of skin and bones, or soup made from beef bones - plenty of gelatinous protein.

I wish you all the best.
wasabi is offline   Reply With QuoteReply With Quote
Old 04-21-2007, 10:07 AM #3
wasabi wasabi is offline
Member
 
Join Date: Feb 2007
Location: California
Posts: 164
10 yr Member
wasabi wasabi is offline
Member
 
Join Date: Feb 2007
Location: California
Posts: 164
10 yr Member
Default

jmilphoto,

To see if you have other symptoms that point to an underlying connective tissue disorder, you might want to check out the connective tissue disorder site:

http://www.ctds.info/index.html
wasabi is offline   Reply With QuoteReply With Quote
Old 08-11-2008, 05:30 AM #4
vini's Avatar
vini vini is offline
Member
 
Join Date: Aug 2008
Location: some were over the rainbow
Posts: 552
10 yr Member
vini vini is offline
Member
vini's Avatar
 
Join Date: Aug 2008
Location: some were over the rainbow
Posts: 552
My Mood: spontaneous CSF leak
10 yr Member
Question csf leak

hello neuro talkers
I have had a head injury on the 19th of December last year were I got fractures to my, frontal / temporal / maxilla/ and orbital floor bones on the right side of my head I have no sensation in the right side of bottom eye lid/ nose top lip/ teeth and gum's also double vision in my right eye I came to in the waiting area of a hospital not knowing were I was or what had happen I could not see my phone so asked the receptionist to call my partner she said the police had phoned some three hours earlier and said I was in a bad way but was ok this was 3am my partner came out with my 7 year old when they arrived I was finally seen by a doctor I could not tell my left from right when xrayed I was given a letter to take to another hospital some 30 miles away ( the queen Victoria East Grinstead uk famous for its work WW2 fighter pilots burns victims known as the gini pig club) there I was scanned told the extent of my injury's they said they could not operate until the day after boxing day 7 days away they gave me some anti bots and pain killers and told me not to blow my nose ( No head injury sheet) a couple of days later I got a cough and cold every time I coughed I had clear fluid run out my nose (not mucus) from the cold about an egg cup full a day salty and thin clear liquid I now know was CSF leaking , I returned to the hospital for the op to fit 3 metal plates to the fractured bones I got into bed and told the nurse that I was worried about this stuff coming out my nose, she said can you make it come out so I coughed and it trickled out . she went and got the surgeon who done some neurological tests he said he could not operate and sent me for a brain scan I was to return for the op on new years eve which I did and the op was done the staff at the hospital were all very nice , but I am left with crushing daily head aches, short term memory loss, find it hard to think, low mood, and a salty taste at the back of my throat could this be the CSF leaking I have had to give up work as I could not cope with my job any more, I have an appointment on the 18 September with a neurologist , Can CSF leak internally ? will my symptoms get better if they can fix it ?
ps I was a victim of an unprovoked attack at a railway station but still have no memory of that night
kind regards Vini
vini is offline   Reply With QuoteReply With Quote
Old 02-16-2009, 07:01 PM #5
dsu1993 dsu1993 is offline
New Member
 
Join Date: Feb 2009
Location: Mississippi
Posts: 1
10 yr Member
dsu1993 dsu1993 is offline
New Member
 
Join Date: Feb 2009
Location: Mississippi
Posts: 1
10 yr Member
Default

I have just recently been diagnosised with spontaneous csf leak. I was in the hospital for 1 month. Currently I am at home on bed rest. Doctors are hoping the tear in the dura will seal on it's on. I have also had 3 spinal taps, but were unsuccessful at finding exactly where the tear is or get any spinal fluid at all. I do know that the tear is in my neck, but unsure how big a tear or if it is in the front or the back. I am willing to go anywhere for some answers.
dsu1993 is offline   Reply With QuoteReply With Quote
Old 02-19-2009, 02:43 PM #6
Bostic Bostic is offline
New Member
 
Join Date: Feb 2009
Location: Southern Ohio
Posts: 1
10 yr Member
Bostic Bostic is offline
New Member
 
Join Date: Feb 2009
Location: Southern Ohio
Posts: 1
10 yr Member
Default CSF leak - good doctor

I stumbled upon this site yesterday 2/18/09 while looking for more information on a great dr. I just saw at Cedars-Sinai in Los Angeles. Dr. Schievink is wonderful as I just got back from LA 1 1/2 wks ago after he attempted to repair a CSF leak on me. It sounds like you would be a great candidate for him. He is very easy to get in to see as he seems to work his patients in very quickly. He is extremely busy but his whole goal seems to be getting those with a CSF leak repaired.
Bostic is offline   Reply With QuoteReply With Quote
"Thanks for this!" says:
Traci1 (01-03-2010)
Old 04-06-2009, 10:17 AM #7
lorimack lorimack is offline
New Member
 
Join Date: Apr 2009
Posts: 2
10 yr Member
lorimack lorimack is offline
New Member
 
Join Date: Apr 2009
Posts: 2
10 yr Member
Exclamation Head Injury and CSF Leak - Info and help PLEASE

Hello everyone - My daughter was in a car accident almost 5 years ago. Four years ago, after many visits to doctors, she was finally diagnosed with a mild to moderate tbi. We have spent these past years doing whatever needed to be done. At this point, we are dealing with many, many endocrine issues as a result of the tbi. She has mentioned to most of the doctors she has seen about this fluid that comes from her ear. It used to be more red/clear and now it is pink/clear. She has also asked almost from the very beginning about this "crackling noise" that she feels is coming from the back of her head. Has anyone hear heard that noise? Has anyone here had the ear leak? We were told to see a neuro-ent. Waste of time, he prescribed flonase and told her that csf was only nose. Also, if anyone knows of a doctor WHO WILL LISTEN in the New York, Connecticut, Massachusetts area I would most definately appreciate the help.
lorimack is offline   Reply With QuoteReply With Quote
Old 04-06-2009, 10:21 AM #8
Chemar's Avatar
Chemar Chemar is offline
Administrator
Community Support Team
 
Join Date: Aug 2006
Posts: 26,948
10 yr Member
Chemar Chemar is offline
Administrator
Community Support Team
Chemar's Avatar
 
Join Date: Aug 2006
Posts: 26,948
10 yr Member
Default

Hi and welcome

this forum is not as active as most of our others so you may also want to make your post on our new member intros forum in case anyone reading there has suggestions for you. I am also going to copy your post out from this thread onto one of its own here on the CSF leak forum and give you the link to our TBI forum as well

here is new members forum
http://neurotalk.psychcentral.com/forum88.html

and here is our TBI forum
http://neurotalk.psychcentral.com/forum92.html
__________________
~Chemar~


*
.


*
.


These forums are for mutual support and information sharing only. The forums are 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.
Chemar is offline   Reply With QuoteReply With Quote
Old 01-02-2010, 06:45 PM #9
Traci1 Traci1 is offline
Junior Member
 
Join Date: Jan 2010
Posts: 7
10 yr Member
Traci1 Traci1 is offline
Junior Member
 
Join Date: Jan 2010
Posts: 7
My Mood: spontaneous CSF leak
10 yr Member
Default

Quote:
Originally Posted by jmilphoto View Post
Hey! I'm new to this forum, although I've visited before. Just wanted to see if there are others who have been dealing with a CSF leak. Seems this is a rare and often misunderstood/misdiagnosed condition. I'd like to find a doctor who is familiar with spontaneous CSF leaks and how to locate them. I started having intermittent headaches about 5 yrs. ago with the classic relief when lying down, I'm now 26 yrs. old. Last summer I was able to convince my neurologist to get me tested and get a bloodpatch. It was a horrible experience, I had 5 spinal taps before the doctor reasoned that he wasn't going to get any spinal fluid. It seems that my pressure was so low that there wasn't enough to take a pressure reading. So I finally go my bloodpatch, which seemed to work for about 5 mons., until slowly the headaches came back. I was scheduled for a CT myelogram (sp?) but cancled it after mysteriously having a week pain free...weird but I'm back to the usual headaches and will hopefully have the test next week. Has anyone had a similar experience? And if so what treatment has helped? Thanks!
I too have been suffering from this for many years, just in the past four months it became very chronic. Nothing but waiting for tests specialists and talking to deaf ears!!!! I went to er at a trauma center and viola! they knew just from my symptoms and did a blood patch!!!! Although it did not last but one day I have shown some improvement since but am stii symptomatic this is very rare and totally misunderstood illness and is very hard to endure, people are clueless!!!!!! most of specialists that know are to far away to get to so far none that i know of in my area i am dealing the best anyone can hope nuero app will get me another blood patch if he even hears me this time seems he also knows nothing!!!!!! hang in there these sites are popping up more and more we just need to keep talking and posting till everyone knows about this illness that has debilitated so many people. thanks for listening feel free tp write, call, text, email and send to others dealing with this would love to exchange stories with more people everyone counts! and i want to hear as much info as i possibly can .
Traci1 is offline   Reply With QuoteReply With Quote
"Thanks for this!" says:
Saraswati1013 (08-29-2014)
Old 03-22-2010, 05:42 AM #10
dankgrl13 dankgrl13 is offline
New Member
 
Join Date: Mar 2010
Posts: 2
8 yr Member
dankgrl13 dankgrl13 is offline
New Member
 
Join Date: Mar 2010
Posts: 2
8 yr Member
Default

It's rare to find a young person with a spontaneous csf leak. Im 24 and have had one for 7 years. Ive been through blood patch hell as well. Fibrin glue patches are more effective/less invasive than surgery. Ultimately the ct myelogram is the definitive test to locate it. California, specficially UCSF and Cedars sinai are the hubs for this. I have a ridic long history, so if you have any specific questions let me know.
dankgrl13 is offline   Reply With QuoteReply With Quote
"Thanks for this!" says:
Saraswati1013 (08-29-2014), sowoo (03-18-2014)
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


Similar Threads
Thread Thread Starter Forum Replies Last Post
csf leak bailey New Member Introductions 4 03-02-2007 10:58 PM


All times are GMT -5. The time now is 02:20 AM.

Powered by vBulletin • Copyright ©2000 - 2020, Jelsoft Enterprises Ltd.
Search Engine Optimisation provided by DragonByte SEO v2.0.31 (Lite) - vBulletin Mods & Addons Copyright © 2020 DragonByte Technologies Ltd.

vBulletin Optimisation provided by vB Optimise v2.7.1 (Lite) - vBulletin Mods & Addons Copyright © 2020 DragonByte Technologies Ltd.
 

NeuroTalk Forums

Helping support those with neurological and related conditions.

 

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.