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Thread: Leaker Roll Call

  1. #1
    Administrator/SYSOP Mike Weins's Avatar
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    Oct 2006
    Blog Entries

    Default Leaker Roll Call

    Sorry to have to start this thread anew, but it couldn't be brought over to the new layout.

  2. #2
    Mother of teen w/ lumbar Scheuerman's, L5 spondylolisthesis, repaired 8-month CSF Leak, L3-S1Fusion (2009)
    Robby's Leak Story

  3. #3
    Community Member dagaz's Avatar
    Join Date
    Oct 2006
    Alberta Canada, with a Beatiful view of the Rockies


    Hi guys... still leaking... I think I'm one of the longest leakers out there... I am thinking of giving up on Canadian NS and going to see Dr. Schvink... Any advice would be greatly appreciated... by the way.... Roll Call... "HERE!"
    Brain/Pit tumor=17 brain surgeries 20year csf leak(Feb, 1993) After initial tumor removal!, SPMS , Hydrocephalus from a intraventricular hemorrhage! Panhypopituitary, Diabetes Insipidus, tension pneumatocele, ( air under the skull next to the brain), 2 craniofacial craniotomies, several shunt revisions, 7 bifrontal craniotomies ... Dag "If I started crying I wouldn't stop!

  4. #4
    Community Member LauraL840's Avatar
    Join Date
    Apr 2007
    NC, USA



    Hiya Connie! Happy to see you survived ANOTHER BT 'forum swap', not so happy to learn you're still leaking! :( How are your feeling? Have you emailed/talked with Dr. Schievink? Hoping and praying things will improve for you!

    Better is one day in your courts than a thousand elsewhere

  5. #5
    New Community Member
    Join Date
    Feb 2008
    Peterborough, Ontario

    Default leaker role call

    I have been leaking since 2007. Have had 10 MRI's to diagnose the leak which is near the base of the neck but it is too close to the brain for the neurosurgeon to want to attempt surgery.

  6. #6
    Community Member
    Join Date
    Mar 2011

    Default Roll Call started on old BT format. Worked well and very helpful. Start again??


    I Thought it might be a good idea to bring over the roll call started by Concerned Gal on the old format. As she said then it is really helpful to have an official roll call (brief summary of our situations) as a reference point. We have created such a community here but with memory issues being a leak symptom, I know I struggle to remember everyone's situation and thought this would assist. Let me know if you want me to edit this post to add other categories to the template. I strongly encourage everyone (especially lurkers!) to add their details.

    Come back from time to time and update your details.

    Type of Leak:
    First Sign of Leak:
    First Diagnosed:
    Brief Summary of Tests to date:
    Brief Summary of Treatment to date:
    Current Symptoms:
    Current Status:
    Other info:

    So here is my situation.

    Location: Devon UK

    Age: 45

    Gender: Female

    Type of Leak: Spinal maybe but I've been told I have no leak

    First Sign of Leak: Sept 07 following slipped disc surgery, Huge CSF leak, surgery to repair leak, contracted meningitis in Theatre, meningitis treated, another huge fast CSF leak, more surgery to repair, sent home after 3 months, 48 hours later headache back. It was insuportable and I developed a large grapefruit size fluid filled lump in my back that slowly disappeared over the following months.

    First Diagnosed: June 08 following Radionucleartide Cisternography.

    Brief Summary of Tests to date: CT's with and without dye, MRI's with and without dye, Cisternography in June 2008 with dye and scans over 72 hours (up and about driving and generally moving around during this period) which showed leak, October 2008 admitted to hospital as I couldnt cope with the headache any more. Bed rest for almost 2 weeks during which another radionucleartide Cisternography with dye and scans over 24 hours was carried out this showed no leak. (Hardly surprising given I hadnt moved or been upright for so long). ICP bolt pressure monitoring, faulty wire first time showed very high levels, new wire showed minimal changes in levels. Some have suggested that the valve may have been faulty.

    Diagnosis of Chronic Migraines in 2010. Yeah right!! Also been told that this is learned behaviour by the brain and will improve with time. The reverse is happening.

    Brief Summary of Treatment to date: Caffeine infusions x 6, POTS (Postural Ortostatic Testing). Medication:- statins, tramadol, tryptins, pentins, paracetemol, anti depressants, topomax, and many more. After migraine diagnosis the Neuro in Plymouth gave me injections in the back of my head to help with this ridiculous migraine diagnosis. Agony and very poorly afterwards.

    Current Symptoms: Headache all day, wake up with less pain, once upright pain increases, sitting horrendous head pressure gets higher and higher and going from sitting to standing causes huge thunderclap head pain, dizziness, nausea, pain behind eyes especially on eye movements, blurred vision, reddened face come end of day, hot head, not light or sound sensitive, concentration problems at end of day. Exhaustion, weakness, any straining such as scrubbing a dirty pot from the cooker for a few minutes will raise my pressure pain in my head. In general I am definately deteriorating as the months pass.

    Current Status: As above, diagnosed with chronic migraine but still believe I have a leak. Been discharged from National Hospital from Neurology and Neurosurgery, London, Queens Square as nothing further they can do. They said that Neuro in Plymouth could continue my care. Well he cant/wont either as he doesnt know what else to do. Despite the fact that he has written a long article on CSF leaks and the diagnostic tools that are available he chooses not to use them on me. So ever since then have been fighting to get someone/anyone to take me seriously. No joy at all. Seems that there really are no specialists in the UK that deal with CSF leaks, or possible CSF leaks. If anyone knows of any I would be very interested and grateful to hear about them. Certainly if there are any they are not prepared to do any of the tests that Dr Gray or Dr Schievink carry out to make an accurate diagnosis. As I write this I am waiting to see if the Exceptional Treatments Committee of the NHS have accepted my referral from Neuro in Plymouth to see Dr Gray at Dukes. I can only hope from the bottom of my heart that they do.

    Other info: Four years and no change only deteriorating, pain there each and every day all day. Various pain meds have had no effect. one particular pain med, Nolotil (only used in Spain I think) caused loss of white blood cells and serious immune deficiencies. so many months in and out of hospital. I have undergone intense counselling for 4 hours a week for 15 months to help with severe depression that culminated in attempted suicide. I Am stronger now but it is a constant fight to stay that way. I so wish I could find some answers. Am not prepared to mask symptoms with medication and anyway medications have such serious side effects and Ive yet to find one that actually works so I dont see the point in putting any form of drugs in my system if actually they arent going to do anything to help.

    In summary, I used to be very fit, an active riding instructor with my own horse, living on a small holding off grid as self sufficient as possible, with many animals, my horse, my own business and needing no more than 6 hours sleep a night. Loved life and loved being active. Now I hate my life, have very little hope of getting better, and cannot stand this pain. I so want to laugh again but even that hurts! I have lost everything I ever worked for and have been completely destroyed not only by the surgeries but by the failings of the medical profession to give me the respect I deserve.

    This group is absolutely amazing, the support I have found to be immense. THANK YOU EVERYONE!

    I also hope to get to meet more UK leakers with or without success stories so that we can support each other as there really does seem to be very little out there for us brits.

    Great to meet you all, I hope this roll call grows as did the old one.


  7. #7


    Location: Canada

    Age: 28

    Gender: female

    Type of Leak: suspected cranial csf leak

    First Sign of Leak: sept 2011

    First Diagnosed: oct 2011

    Brief Summary of Tests to date: ct scan, normal

    Brief Summary of Treatment to date: many doc visits, 2 visits to neurosurgeon who put me on bed rest for three month

    Current Symptoms: positional headache, fluid draining from nose, dripping down back of throat, sore throat, stiff neck and back, light sensitivity, strong stabbing pain around eyes and temple, feeling of pressure in head when lying down, dripping like feeling in head, cold feeling on forehead, exhaustion, slight ringing in ears, tingling and numbness in face, itching of face and nose comes and go.... Oh and a sense of overwheming hopelessness and anxiety

    Current Status: approaching 11weeks bed rest.... Symptoms are pretty much the same...

    Other info: This all stemmed from a hit in the head, which I am not seeing as often on th site (I have been reading for awhile), my 2yr old daughter bucked back at me one night (teething and over tired toddlers are a head injury waiting to happen) she hit me in my left eye socket- really got me good. Throwing up within the hour and a horrendous head ache. Suspected concussion, two days of Tylenol and was feeling better. Had some crazy days (I also have a 2 months old son and a husband that has underwent 2 surgeries and a serious infection since this has happened) had a couple of family functions - probably over did it. 2 yr old had a tantrum and had to carry her having a fit and my son in his car seat across a parking lot. This was 5 days after initial injury... symptoms were: ear ache (slight). , tooth ache (slight, generalized area in molars), stiff jaw, sore neck, sinus headache, runny nose with watery discharge, headache worsening - ease with lying down worsening in evening, pins and needles in head and arms, hot fluid feeling dripping in head, light sensitivity, eye and temple pain, head pressure.....

    The most difficult thing for me is my two children 2 and 4 months, my ill husband and lack of help. I also do not take painkillers, I try and survive on 2 exra strength tylenols a day - torture. My son was prematurely born and he is breastfeed an I am nervous of any adverse effects on him. And it is not as if the pain killers will heal me anyways. Trying to keep positive although failing most days.

  8. #8


    I am glad to meet u and really do feel with u!

  9. #9


    Location: United States

    Age: 40 something or another....

    Gender: F

    Type of Leak: Cribriform Plate CSF leak

    First Sign of Leak: Constant headache with intermittent clear fluid drainage out of my nose when I would bend over...developed into constant salty drainage down my throat.

    First Diagnosed: Symptoms began in 2003/4 but not diagnosed until 2010. I think the leak was traumatic in origin--I ran into a steel door head first (yes, I was trying to open it and run at the same time...apparently not a wise move on my part) and started getting headaches when I never had had them amped up to the leaking and constant headache over the course of a year.

    Brief Summary of Tests to date:
     Brain MRA/MRV
     MRI brain with CINE flow
     Cervical MRA/CINE flow
     Cervical Spine MRI
     CT Myelogram
     CT Cisternogram--Lord this test was a miserable one
     Multiple CSF pressures...all less than 3 except one that was 10 (but it was a rare spate of reduced symptoms--a temporary seal of the leak...??)
     Ironically it was a plain old thin cut CT scan that showed the leak from every, least invasive, and cheapest.

    I don't have meningeal enhancement but do have brain sag. I have a pseudomeningocele and a bony flap at the point of the leak.

    Brief Summary of Treatment to date: Cribriform patch surgery--didn't hold

    Current Symptoms: Headache--constant pressure and not so clearly positional at this point, though standing for any period makes it worse. Sometimes I wake up with it hurting much more, though. It's very unpredictable. I also have heart racing/pounding/arrythmias, eye globe pain, visual migraines, intermittently blurry vision, fatigue, constant one-sided sore throat where the CSF drains down my throat, snuffling/choking on CSF fluid (middle of the night coughing fits), neck pain and pain between my shoulders, upper back/spine pain.

    Current Status: Trying to figure out the next step to avoid another failed surgery. The surgeon is concerned I have a propensity for inracranial hypertension though I had no risk factors for it at the time the leak began. At this point, though, any IH may be caused by CSF upregulation from the chronic leak.
    Last edited by Darcey; 01-06-2012 at 10:45 AM.

  10. #10
    Community Member dagaz's Avatar
    Join Date
    Oct 2006
    Alberta Canada, with a Beatiful view of the Rockies


    Wow did Brain Talk slow down...snif*
    Brain/Pit tumor=17 brain surgeries 20year csf leak(Feb, 1993) After initial tumor removal!, SPMS , Hydrocephalus from a intraventricular hemorrhage! Panhypopituitary, Diabetes Insipidus, tension pneumatocele, ( air under the skull next to the brain), 2 craniofacial craniotomies, several shunt revisions, 7 bifrontal craniotomies ... Dag "If I started crying I wouldn't stop!

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