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CSF leak undetected

Posted , 24 users are following.

michelle0327
michelle0327

After MRI with contrast of brain, cervical, thorasic,  and lumbar my csf leak was not detected. From what I am reading this is pretty normal not to find the leak. I was dx with intracranial hypotension a week ago after suffering headaches for 5 weeks and being put through chronic migraine treatment torture. I did a  nerve block,  IV treatments at home,  several IM medicaitons,  oral meds,  several trips to the ER and nothing was helping. Finally my Dr. ordered the Lumbar Puncture and there realized the pressure was so low. I am on bedrest for now and IV fluids at home for the next 7 days and advised drink a lot of fluids. My Dr. said if not better by Tuesday they will attempt a blood patch even though they don't know where the leak is. I am hesitant with that and looking for advise from those that have been through this. Symptoms I have had over the past month are the headache of course that sometimes just 1 side sometimes both mostly feels like a lot of pressure, jaw pain pressure, numbness in my face/cheek, a lot of recent pressure around the bridge of my nose. I have numbness down my legs, feet, hips, and especially my toes, heels and knees. I hear ringing and popping/tapping noise in my head/ear all the time. If I remain in bed my pain is 1/2 but after sitting up for 20-30 minutues is starts to rise and within an hour easily I can be at a 10. I hope this all sounds a like for you all and that my dr. really is on the right path. She stated yesterday my brain MRI looks normal just kept stating no leak. Any suggestions, comments would be appreciated. Thanks, Michelle from Ohio  

1 like, 45 replies

45 Replies

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  • michael_28011
    michael_28011 michelle0327

    Posted

    Hi Michelle,

    my expeirences with blood patches is this. They insert a neddle into your spinal column, (lower back) filled with your own blood. It can be very painful but other people don't have much of a problem with it. I had this done in an out patient surgery room. First the blood patch was put in and then later I had saline put in to sustitute for the lack of fluid. After the proceedure I had to go the recovery room and lie flat for about an hour and half or two. This is to keep you from getting a severe headache. MRI 's are by no means perfect in finding leaks.

    Blood patches are also by no means perfect. There is also a sythetic patch that you may want to keep in mind if the blood patchs continues not to work. The blood patch in therory "SHOULD"patch the hole or holes but again it is far from a perfect process.

    No I've never had IV fluid at home but the many visits I made to different hospitals I most times had IV fluid.

    The best way to tackle this illness is this. 1. Keep asking questions! Again this is a rare problem and it was my experience that most doctors have little or no knowledge on this matter. Get a second and third and possible a forth opinion. I even went to the Mayo Clinic and thought that they would have all the answers, they were clueless as most others were. The most important thing is this. Tackle one problem at a time. There are so many problems with an illness like this that it is easy to become overwehlmed. Again I made it threw. I'll spare you some of the more grusome horror stories. Also I hope you have a good support system so you can talk things out. Because this type of illness is rare it at times can make the patient feel isolated. Keep pushing and always remember that I came out of it better than ever. Even though it was a hell of a trip.

    All the best, feel free to contact me,

    Michael

    • OntarioDude
      OntarioDude michael_28011

      Posted

      Interesting, I always thought if there is an answer, the Mayo clinic would have it. Speaking of MRIs I have a MRI image of what I believe could possibly be CFS leak in my spine around C1 (I have a lot of strange unexplained neurological problems like tinnitus, photophobia, weakness, dizziness etc...)

      Any thoughts or ideas guys and girls? This is a T1 sagital cut so *i think* it could either be fat or an actual leakage...

    • michael_28011
      michael_28011 OntarioDude

      Posted

      Hi OntarioDude,

      The Mayo clinic was a bad joke. Do the same thing as every other hospital but expecting different results is insanity, The Mayo Clinic to a tee..........

      You and your doctor may want to investigate this test further, it is called a Radionuclide Cisternogram. It may in fact be a much better way of finding leaks.

      Michael

    • kurt20919
      kurt20919 OntarioDude

      Posted

      I have had this condition twice now, the latest being the last weekend in November... MR is not the best tool for finding the leak location but can tell where "pooling" occurs. Flouro-myelogram and ct-myelogram have found the locations of the dural leaks in my cases. The first one was pretty elusive and took a procedure that had never been used at that institution...dynamic ct-myelogram. So they placed the needle in fluoroscopy then wheeled me over to the ct, lit me up with contrast and started taking pics, that way they could see where it leaked out. This last weekend the neurorad was able to see it under flouroscopy after lumbar puncture with contrast. Anyway, if I can offer any insight let me know. It's no fun, but hang in there...
    • OntarioDude
      OntarioDude michael_28011

      Posted

      Thanks, if you don't mind what tests did they do and how much did they cost? I live in Canada so anything would be out of pocket and I'm just trying to figure out how much it would cost roughly...
    • OntarioDude
      OntarioDude kurt20919

      Posted

      Thanks Kurt. What kind of symptoms you were experiencing? Was the leak in your spine or brain? 

      I have a wide range of symptoms: muscle shaking, twitches, tingles, cramps, fatigue, light sensetivity, sound sensetivity, tinitus, rib cage pain, shortness of breath etc... so puzzled right now they don't fit any one typical common neuro disorder...

    • kurt20919
      kurt20919 OntarioDude

      Posted

      I started with a weak neck, heavy head feeling, then my head kind of goes numb...tingling all over, burning sensation in my tongue, hot and cold sensations mostly on my face, light headedness, muscle weakness on the fronts of my arms. Both times I've been treated it was pretty emergent and I was in critical neuro care at the university of utah so I wasn't up and about. Cost, not sure, we have very good insurance. The tests I had are all imaging, MR, CT, X-ray. The procedure that has fixed me up both times is hi volume blood patch. Both times the leak has been in middle spine...t6 to t8 the first time....t8 to t11 this time. Right now I'm on a good mend, hopefully back to work next week.
    • melinda23
      melinda23 kurt20919

      Posted

      Would I be able to talk about you about what I went through?
    • hayley_02525
      hayley_02525 michael_28011

      Posted

      did you have a cisternogram? I have to be one and I'm quite worried about it why do they do exactly. I've had 4 lumbar puncture before when I had bacterial meningitis but how far do they tilt you and how long for? X

    • christina59713
      christina59713 OntarioDude

      Posted

      Hello i have these symptoms and was confirmed last week I have had a CSF leak. But the accident happened two years ago now . I have all the symptoms weakness headaches breathless yet he said it would have sealed now as no leakage for 5 months but I still have symptoms ?
  • melinda23
    melinda23 michelle0327

    Posted

    Your symptoms match mine....did the blood patch help at all?  Can I show your post to my neurosurgeon?  I am in Ohio.  I have literally been through hell since my brain surgery on Nov 25, 2013.
  • jon43423
    jon43423 michelle0327

    Posted

    Hi Michelle. My name is Jon Wilt. I live in Az. I had a csf leak post diskectomy. I have since had it sugically repaired. I still have headaches, pressure on the ears/nose, constant ear/face popping etc. I was hoping you would share with me a little more about your similar symptoms as they are so rare in hopes that we can help one another. I know it has been 11 months since your post. Hope you are well! Thank you. Jon
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