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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

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  • Michellle
    Michellle michelle0327

    Posted

    Oh Michelle,

    These are my EXACT same symptoms from a year ago. It is touture. I am going out today (I got better!) but I know how badly I needed to message someone who knew what it felt like. If you would like to contact me, I can share what I did and what worked and what didn't, I tried everything.

    I hope you feel better soon ❤

    Emis Moderator comment: I have removed the email address as we do not publish these in the forums. If users wish to exchange contact details please use the Private Message service.

    http://patient.uservoice.com/knowledgebase/articles/398331-private-messages

    • devin10218
      devin10218 Michellle

      Posted

      Michelle.

      Thank you for posting this . Congrats . Id love to give you my email. Ive been bedridden 10 months. Tons of meds, mris, mylegrams, two blood patches. Going for another blood patch soon. Ive been to three states with little help. Drs shake their heads.ive lost my job, apartment and cant drive. My mother says were broke and no more driving places. I hope i can give you my email address.

    • Michellle
      Michellle devin10218

      Posted

      Oh god. What a nightmare. I'll send you my email address and we can converse privately smile
    • Michellle
      Michellle devin10218

      Posted

      I'm not sure how to send a private message. I'll give you my Facebook name if you want to private message me there?

      Michelle Arlidge Bremner

    • devin10218
      devin10218 Michellle

      Posted

      Michelle

      Thank you so much for responding. I dont havea. Fb page. Im going to see if I can try to private msg you on here.

    • devin10218
      devin10218 Michellle

      Posted

      I cant figure private msging on here either. Do you have twitter? brito_devin

      Im in a red dress next to my husband....my profile pic

    • devin10218
      devin10218

      Posted

      I found private msging. Click the envelope by my name. I sent you a private msg. 😀
    • peter59919
      peter59919 Michellle

      Posted

      Hi Michelle,

      Just came across your post. I've also been suffering the exact same symptoms for the last 8 years.

      I would love to know what worked and what didn't for you?

      All the best,

      Pete

  • michael_28011
    michael_28011 michelle0327

    Posted

    Hi Michelle,

    The illness I had was called spontanious hypo tension of the brain. I had holes in my spinal column which allowed my spinal fluid to slowly run out. This caused many many problems. I had about 5 blood patches until it finally worked.

    Headaches: I had numerous nasty headaches. I was prescribed a middle of the road headache medication called Tramadol which helped somewhat, though there are more powerful medications, check with your doctor. Csf leaks are many times very hard to find. The headaches, numbness and pressure could be caused by the lack of spinal fluid you have which effects the function of the brain. One of my symptoms was a loss of motors skills. This greatly effected my speach, my ability to walk and also caused drooling. I am no doctor but it sounds like to relieve your symptoms you will have to have a blood patch. I won't lie, they can be unpleasent to say the least. This illness is extremely rare and usually takes a fairly good amount of time to solve. 

    On the bright side though I made it through after about six years of numerous surgeries, blood patches and more MRI's than I can remember. You will know if your fluid runs really low because you will get even more symptoms however this in a way is good because it will confirm that you do infact have a leak. 

    Please feel free to contact me with any questions you may have. I made it threw and so can you.

    All the best,

    Michael

    • michelle0327
      michelle0327 michael_28011

      Posted

      I guess I just don't understand where they would insert the blood patch if they don't know where the leak is. I guess just pick a spot in the spine and hope it travels to the leak and wish for the best. I am looking at getting a second opinion as well I just want to get another set of eyes on my MRI's as well. Have you done IV fluid at home? My doctor is giving me 1 liter a day at home now and also pushing me to drink as much as possible too.
    • devin10218
      devin10218 michael_28011

      Posted

      Hello Michael

      Is it possible to get more info from you? Ive been bedridden with this and have been out of state three times, mylegrams , 6 lumbar punctures, tons of meds, mris , ct scans, 2 blood patches, ive lost my job, cant drive, lost my apartment. This started 10 months ago. Blottle support from my family because they think I'm crazy. Im broke because of this. I live in Florida and just saw a neurosurgeon out of town which my mother has said shes not driving me anywhere else, but this surgeon suggested two more blood patches with two weeks space but to do it where i live. Now my blood pressure is getting pretty low. Im worried about my health. Please share what ever you can with me. Id be happy to even give you my email address. Congrats on beating this nasty illness.

    • melinda23
      melinda23 michael_28011

      Posted

      Would I be able to talk to you about everything that you went through?
    • edislav63495
      edislav63495 michael_28011

      Posted

      Hi Michael,

      My name is Eddie and I have a spinal leak from epidural. I have blurry vision, sensitivity to sound, headaches, ringing ears etc. I would like to know about your experience and what you did. Please contact me at 7023021813.

    • michael_28011
      michael_28011 edislav63495

      Posted

      Hi Eddie,

      I would be more than happy to talk to you on the phone. There is only one problem, I cannot speak. I have a new illness which has turned me into a mute. We could still use this format to speak?

      Briefly, My fluid leak was fixed by something called a blood patch. Your own blood is injected into your spine to patch the holes. This procedure is far from perfect and can be quite painful. Once the blood patch takes, saline is injected to replace the spinal fluid. I also had vision problems, but that passed. Headaches are pretty normal and can get nasty. If this is the case with your situation, ask your doctor to prescribe medication for it. Are you seeing a neurologist? Have you had a CT scan?

      Michael P.S. Feel free to contact me with any further questions or concerns.

      Michael 

    • alex15539
      alex15539 michael_28011

      Posted

      Bro please help I have a cyst in my head and can’t tell if pressure is low. If it is low I need to get it to be token care of. If not I’m my brain will herniate either way please hmu. 6784929297
    • bianca66065
      bianca66065 devin10218

      Posted

      Hi, Devin!

      I know that your post is from 2 years ago, but I live in Florida too and Im having the same syptoms, had 4 Blood Patches and Im wondering if you can help me? Wich dr did you see here in Florida? How are you feeling now? Are you healed? 

      Tks in advance.

      Best Regards,

      Bianca

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