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My son has Spontaneous Intracranial Hypotension

Posted , 35 users are following.

Liza66
Liza66

My son has had this condition (SIH) for well over a year now, and he is just beginning to function enough to go back to work but with reduced workload. His boss is very understanding, and he is lucky with that.

I have not heard of this condition before and wondered if anyone else has had it and how they managed with it. Just rest is the order of the day, use painkillers and drink more water.

The debilitating aspect of it was having to lie down a lot and the headaches were intense. He has seen specialists but no actual treatment has been forthcoming. It seems that it will repair itself, and over a long period of time. It is a weird condition. The brain looses its bouyancy as fluid drains away. More info is required about this condition, without scaring people though, but if it happens, then it happens.

1 like, 119 replies

119 Replies

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  • elaine05672
    elaine05672 Liza66

    Posted

    Hi Liza: How is your son doing today?
    • Liza66
      Liza66 elaine05672

      Posted

      Hi Elaine, welcome to the board. My son is quite well, and still waiting for the results of tests. They seem to take ages. I will write when I have more information.

      I hope you are feeling better today.

      The condition is a bit of a mystery from what my son tells us but then it is difficult to know the best way to treat it. We hope you are getting the best treatment for yours.

      All the best, and take care.

    • elaine05672
      elaine05672 Liza66

      Posted

      Thanks Liza66 taking it slow and trying to keep positive.

      Elaine.

  • cerian42405
    cerian42405 Liza66

    Posted

    Wow I didn't know another csf leak group existed. My husband has been leaking 2.5 yrs. We've been following the UK and international Facebook csf leak groups. Hello all :-)
    • Liza66
      Liza66 cerian42405

      Posted

      Hello cerian42405, glad you found us!

      Now that Facebook is involved with a csf leak group I can expect many more posts on here, maybe?

      I had not known about a Facebook group. I'll tell my son about it.

      All the best,

      Liza66

  • daibhidh
    daibhidh Liza66

    Posted

    Hi folks. I'm 36 from Scotland and I've been suffering from a CSF leak/Intracranial Hypotension for over two years now. I travelled to the USA this summer for surgery with world expert, Dr Schievink, but I'm still symptomatic (suspect an secondary iatrogenic leak from a lumbar puncture). I'm active on the two main csf leaks Facebook groups, where there are a lot of other folk from the UK as well. I'm also in the process of setting up a charity to try to rain the profile of this condition, improve access to treatments etc. We have a website at www.csfleak.info which contains quite a lot of information. There are a couple of glitches on the specialist search and leaker map functions, which I'm trying to iron out! Sorry to guys all have to deal with this condition too, but glad I've found you! David :-)
    • Liza66
      Liza66 daibhidh

      Posted

      Hi daibhidh,

      Thanks for that link to csf leak info, I will tell my son about it. I have viewed the site and he would be interested, I'm sure.

      He is very laid back about it now as he has continued working, driving, family events, all the usual stuff of living and he is grateful that he has got this far. He had his time on his back for days and hours in hospital and feeling rough so he knows what could happen, again. Hope not though.

      I hope your condition improves too, and you get to attract attention from the powers that be to improve access to treatments, a good thing in this case. We hear so much about many other conditions and the treatments for them, so it is about time csf got a chance. Would an article in one of the daily papers help? Just a thought.

      Best wishes,

      Liza66

    • daibhidh
      daibhidh Liza66

      Posted

      Hi Liza. We've had a lot of media coverage recently, as it happens, with articles in the Sun and Glasgow Herald only two weeks ago. I'm pretty much bed bound now since a poorly performed lumbar puncture back in February while they were trying to locate my original leak, having previously improved and been able to return to work as symptoms slowly improved. Now trying to get back to a state whereby I can live a bit more, rather than just exist. It's great to hear that your son has improved. Good news :-)
    • Liza66
      Liza66 daibhidh

      Posted

      Hi daibhidh. It's been a bad time for you, sorry to hear it.

      More research is definitely needed on this condition. I'm not sure if it is an illness or a condition, but it is not easy to cope with, that's for sure.

      It's good that there has been some publicity about it. Now we need a TV article in the news or even a mention on a few programmes. The public has a right to know. It is in the public interest to know, I'd have thought.

      In your present state, I bet that you are glad that there is the internet to use and keep your mind busy. Do you have a Kindle and can read books? It all helps.

      Best wishes

      Liza66

    • daibhidh
      daibhidh Liza66

      Posted

      I think it can be a condition and an illness. Some are caused by connective tissue disorders, some iatrogenic, some (like mine) a result of bone spurs and calcified disks, some unknown. One of the problems is that too many doctors fail to understand that leaks can happened for a variety of reasons and depending on the underlying cause, require different approaches for detection and treatment. Education is key!
    • angeebabee
      angeebabee daibhidh

      Posted

      Hello diabhidh

      I was diagnosed with SIH at end of may 2015 after suffering with it for 16 months.

      I've now been putting up with it for 22 months.

      I've had one blood patch performed 2 weeks ago! But sadly no improvement :-(

      I would like to join you're Facebook page for CSF leak / spontaneous intra cranial hypo tention page please could you msg me the link thank you.

      I would like to speak with people who know what I'm going through as this is a rare condition and not much I'm formation out there.

      Regards Angie.C fife, scotland

  • jantina29049
    jantina29049 Liza66

    Posted

    Hi,

    I have SIH which caused a SAH 18 months ago.  No leaks were found on repeated scans. Facebook has a page for CSF leaks spinal/cerebral  which is very informative about the types of scans we should be having to find these leaks that cause brain sagging.   There is no medication that allows you to function while your brain is sagging during an attack. The period between lying down and blacking out due to the pain could be releaved by oramorph/ morphine which could be very dangerous if self medicating as only sufferers will understand that  it would be so easy to take the whole bottle so severe is the pain. I tried explaining the pain to friends and could only compare it to an attack of cramp in your calf only it's in your head and last much much longer.  There definately seems a lack of interest in this condition  from Neurologist who can't seem to think outside the box and that these leaks do exist even though they don't always show up in a standard mri scans.   

  • angeebabee
    angeebabee Liza66

    Posted

    Hello liza66

    I was diagnosed with spontaneous intra cranial hypo tention at end of may this year (2015) but I have been suffice with it since a week after my son was born he is now 22 months old!

    I've been to the ENT depth at hospital had it all checked everything fine and after countless doctor appoinments and prescriptions of diff painkillers and also amitriptilene! My doctor referred me to hospital for MRI scan this was 16 months after my son's birth.

    Pain is in back of my head mostly like a throbbing also i get neck stiffness, vertigo, sore/aching legs also my nose hurts deep in side like I've been punched in it also see things have dull ringing in my ears.

    It hurts when I bend over to do tasks like washing clothes, picking up my son's toys etc also when I laugh or cough or shout it hurts real bad and I have to lie down flat out on my back to elevate the pain.

    I had a blood patch done 2 weeks ago but no improvement 😡😳😧😦😢

    The anaesthetist has already took 20ml of my blood for next blood patch to be done. He told me though that he would only do one more as it lessons it's chances of working the more times its done!?

    I have an appointment to see my consultant next week but I have been informed that there's no other treatment for it and I have never been told it could mend itself!

    Hope your son has had success in his treatment.

    • bshah
      bshah angeebabee

      Posted

      So many symptoms there similar to my own.

      Is your main consultant a neurologist?

      Next step I believe should be further investigations to try to locate the site of the leak, as a blood patch or resin in the area seems to work better than just ordinary patch in back.

      Good luck.

    • cerian42405
      cerian42405 angeebabee

      Posted

      So sorry to hear this. According to Dr Schievink (world specialist in CSF leaks) it takes on average 2.5 blood patches to fix a lumbar puncture leak so not convinced your consultant knows what he's talking about. Some people have had 10s of patches before relief although they are not without risk. Did you have an epidural during labour? Have they targeted the blood patch where the epidural was carried out?
    • angeebabee
      angeebabee cerian42405

      Posted

      Hi

      Thanks for your response 😊

      My consultant is a neurologist and he ordered my mri scans 3 in total head, back and then with the dye. It was the anesatist that said he would only do 2 blood patches as he says it only 30% they work anyway!

      Which did confuse me alot as my consultant said the leak is cranial but the anesatist said No they didn't know exactly where leak is!!! So he did blood patch just above the lumbar part of my back I was tender after it but I had no bruising what so ever which he said I would get so does that mean he did it wrong I don't know so as you can imagine how confused and anoid I am.

      I have 3 children and never had any pain relief with any of them, I don't believe in epidurals, the thought of needles in my spine urgh no I'd rather feel the pain!

      So ironic now that I've had the blood patch done.

    • angeebabee
      angeebabee bshah

      Posted

      Hi

      Thanks for your response 😊

      My consultant is a neurologist and he ordered my mri scans 3 in total head, back and then with the dye. It was the anesatist that said he would only do 2 blood patches as he says it only 30% they work anyway!

      Which did confuse me alot as my consultant said the leak is cranial but the anesatist said No they didn't know exactly where leak is!!! So he did blood patch just above the lumbar part of my back I was tender after it but I had no bruising what so ever which he said I would get so does that mean he did it wrong I don't know 😞😥😦😧😕😩 so as you can imagine how confused and anoid I am.

      I have 3 children and never had any pain relief with any of them, I don't believe in epidurals, the thought of needles in my spine urgh no I'd rather feel the pain!

      So ironic now that I've had the blood patch done.

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