Intracranial hypotension? CSF leak? But no headache - is this possible?

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I'm 2 years into a journey to try & find out what it going on with me. I have been having memory and concentration problems, which are worsening. I also have problems with word finding/mixing. My sleep is affected & I have insomnia and nighttime anxiety - which you could almost set your watch by & comes on from around 8pm. I also get bouts of fatigue and horrible irritability.

I also get pressure at the back of my neck and when bending over and some popping, blocked ear feelings (occasional). But NO headaches other than one major 24hr migraine 2y ago.

I had a head mri 18m ago which showed 'a degree of cerebullar slumping' and some descent of the cerebullar tonsils into the foramen magnum. They said I had Arnold chiari malformation and that it was congenital and should be symptomless.

However I'm continuing to worsen in my symptoms.

I have just had another mri and am now waiting for the results.

I'm just wondering, having done some research whether it is possible that I have intracranial hypotension or a CSF leak and that this is the cause of the slumping and not a chiari at all?? From what I've read it could be cause all of my symptoms, but the most common ones of headaches is missing - has anyone had any experience of this condition but without headaches?? Is this possible and if it is this is it easy enough to detect on mri??

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  • Posted

    Hi Twinky,

    MRI's are not perfect in detecting this kind of thing and I should know because I had a CSF leaks. Your symptoms probably are getting worse because you have less and less spinal fluid. When I had my problems I had very bad headaches but everyone is different. There is an endless list of symptoms from this problem and again everyone is different. Hang in there, tackle one problem at a time other wise you can start to feel overwehlmed. Remember this, you've been going through this for 2 years, I went through it for 6 years and now I feel better than ever!

    Sincerely,

    Michael

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    • Posted

      Thanks Michael

      I'm only wondering if I may have a CSF leak, it hasn't been formally suggested. I have read though that chiari is often misdiagnosed when it is intracranial hypotension that is to blame. They definitely said in the report 2y ago that there was 'a degree of slumping' which you don't generally get with chiari & it is this which is leading me to wonder. It was also commented 'are there any other symptoms to indicate intracranial hypotension?'. This however was never followed up. Probably because I didn't have headaches? Is it possible to have this condition with no headaches??

      How were you eventually diagnosed if you don't mind me asking?

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    • Posted

      hi michael 28011 i hope you get this. I have been suffering for 6 years in pain of the unknown and in and out of doctors and i suspect csf rhinorrhea. I finally will be getting a doctor to test for this. I have questions for you please contact me thanks.
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  • Posted

    Your welcome Twinky,

    First and formost please bring up the idea of the CSF leak with your doctor. You should also very strongly think about getting a second opinion. The illness is very rare, 5 in 100,000. This illness is extremely hard to diagnois! More on that shortly. Some of the many problems I had included, loss of motor skills, loss of peripheral vision, trouble walking, I used a cane for about three years, trouble talking, drooling, memory loss, weight loss, I weighted 205 pounds before the illness and at the worst point I weighted 135 pounds. Thats just some of the things I went through. This illness can also cause strokes, blindness, deafness, palzies and well lets leave it at that. I had severe headaches for a time but since the illness is so rare and I have never actually met another person with this illness along with the fact that 99% of doctors don't have a clue I can't honest answer your question about not having headaches. 

    How I was eventually diagnosed. I went to many many doctors, I was in anywere between 10-15 hospitals and even visited Mayo clinic in Rodchester Minnesota, which is suppose to be one of the best hospitals on the planet, turned out Mayo Clinic didn't have a clue either. Ultimately a local doctor figured it out!

    Please feel free to continue to contact me about this. When most people go to the doctor they tell the doctor there symptoms and the doctor takes care of the problem. With this illness your off the radar as far as diagnosis goes. Hang in there, recognition is a big step in the right direction!

    Sincerely,

    Michael

     

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    • Posted

      Hi Michael,

      i know this is an old thread, but came across it and wanted to contact you because I believe I have a CSF leak and have a lot of questions.  I am not sure how to message you.

      Thanks, 

      Eve

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    • Posted

      Hello, I came accross this post as I have been diagnosed with intracranial hypotension due to undetected spontaneous spinal leak. I had headaches for 15 days and double vision for 2 months. The MRI showed enlargement of the meninges and subdural haematomas. Because the headache and the double vision have improved by themselves my neurologist believes waiting is the best. However, I start having cognitive decay, paresthesia and start suffering from anxiety and lack of sleep. Also I lost 7 kg in the last couple of months. My neurologist believes symptoms may last up to a year as my body went through a lot.

      I am considering proposing a blood patch as I believe this may help with the symptoms.

      From your story I understand you had similar symptoms that went on for long time and didn't resolve by themselves.

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    • Posted

      Hello Michael.

      I want to thank you for your comment, really much appreciated.

      I am going to request a blood patch in the next appointment with my neurologist in over a week.

      Is there supposed to be an immediate improvement after the blood patch? How would I know if it has worked?

      Is there something specific I should be requesting during/after the blood patch? How many hours laying in specific position (my leak is supposed to be in the thoracic area).? How many days of home recovery and expected symptoms afterwards?

      Sorry for the many questions.

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    • Posted

      Hi gonfin,

      Your welcome. 

      Immediate improvement? I'm guessing that varies from patient to patient. I usually came around in a week, maybe two? However, this depends on if the blood patch works. I didn't request anything special before or after the blood patch. After it was done, they made me lie down for about an hour and a half or two. My recovery time was short, 2,3, maybe 4 days. Once I left the hospital after the blood patch I was always unbelievable hungry?

      Please feel free to ask me any questions you have, I'm here to help.

      Michael

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    • Posted

      Michael, 

      thanks a lot. I am afraid that I may have high pressure because I am not having headaches anymore and that the blood patch could do the opposite effect and leave me with more symptoms afterwards. Have you heard of this? Is it a potential possibility given that I do not have headache?

      Are you completely symptom free after the patch and back to normal or there are any neurological sequela such as head pressure, tinitus,etc?

      At the moment my cognitive symptoms are improving, but my emotional symptoms are getting worse. I still have pressure in the head and partially blocked ears when upright.

      Each day I wake up at 1-3 am and cannot sleep anymore. so 4-5 hours of sleep per day doesnt help either.

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    • Posted

      Hi gonfin,

      I think high pressure is called Hyper Tension of the Brain? I don't know how that is treated or if a blood patch is involved? There are an endless amount of symptoms for Hypo Tension of the Brain. I don't think everyone, who has it has headaches, however, I did. I have some minor left brain issues lingering from the illness. The emotional issues come with the illness. Talking about things and not isolating yourself can help with your emotions. Try to tackle one issue at a time. Trying to take everything on at once can be overwhelming. Since sleep is an important part of feeling better, I would talk to your doctor about taking prescription medication to help you sleep. A good night of sleep will help you with your emotional symptoms. I nearly died from this illness. I lost 80 pounds and was headed for an assisted care facility. I was a barely functioning vegetable. I have no magical answer on how I beat things. You will outlive this, as I did. Stay in touch, I hope this was helpful.

      Michael

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    • Posted

      Michael,

      I had my blood patch done 3 weeks ago and for the moment I feel no major changes. The pressure in my head and the tinnitus increased after the blood patch and maybe my fatigue has improved a little and the back nerve pain has not come back. Still feel lightly dizzy most of the time. I believe multiple patches may be required to completely resolve this? Or are these the lingering brain issues you mention?

      Thanks

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    • Posted

      Hi gonfin,

      In my case, three weeks after I had a blood patch I usually was doing pretty well. You, of course, will probably react differently than me. 

      When my blood patch showed signs that it had not succeeded, I started repeating symptoms, memory loss, difficulty talking clearly, walking without any kind of secure, normal gait and drooling.

      Since you haven't gotten better or worse, give it another week?

      The possibility does exist that you may have to have more than 1 blood patch. This particular method is pre-historic compared to many treatments for most other illnesses. 

      Feel free to contact me with any questions you have,

      Michael

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    • Posted

      Hi Michael,

      Your story seems similar to mine. I'm from Hawaii and have been battling symptoms for 3 years. Last summer I went to Mayo in Rochester and they basically only tested me with a Tilt Table Test (since I've been extensively tested in Hawaii with heart and MRI...all normal). How did your local doctor figure it out? What was your treatment? 

      I feel that since I went to Mayo often times doctors feel there is nothing else they can do since Mayo is...Mayo?

      Mahalo for any help you can provide,

      Tiare

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    • Posted

      Hi Tiare,

      My experience with Mayo was the same as yours. The saying, "Doing the same thing and expecting different results" is the definition of insanity.

      A doctor at my local hospital figuring it out was luck? It also took a while to "figure it out." Once they put a name to it it still to years to resolve the illness. Ultimately my treatment were blood patches.

      The only advice I can give you is very simple, if you have a doctor who is not aggressive enough, get another doctor.  

      I wish I had a more direct solution to resolve things. However, it is best, to be honest with you. 

      Please feel free to contact me,

      Michael

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    • Posted

      Hi Michael,

      Thanks for your honest reply. I'm currently scheduled to see a doctor in California who specializes in intracranial hypotension. I sent him my MRI scans and he also says there are normal but many of his patients have normal MRIs. He will do a MRI with myelogram (spelling?) and then the next day an epidural blood patch as a means for therapeutic and diagnostic. You shared that it took 5 epidural blood patches to work...I guess my question would be what to expect after one and how far apart were your multiple blood patches? Also why five vs. four or three blood patches?

      Mahalo,

      Tiare

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    • Posted

      Hi Tiare,

      I had many many MRI's and they were all normal. My guess is that MRI's are not the best test for this illness.

      Blood patches are in my opinion a somewhat crude and inconsistent solution to this serious problem.

      The time between each blood patch varied. Roughly speaking, I would say they lasted for about 3-6 months? Remember, memory lost was one of my problems, however, in retrospect, this is fairly accurate.

      Your results maybe much better. Remember, my case was quiet extreme.

      Michael

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