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lisap

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PostSubject: me again   Wed Apr 09, 2014 1:18 pm

Hello all  
          Update I have had 2 letters from my ent consultant the first explaining how a shunt is my only option to enable my csf leak to be repaired successfully, the second 6 days later saying decision has been made to repair the leak with a lumbar drain in place to give the repair time to heal whilst I am so happy not to need a shunt I still have not had a single consultation with a neurologist or ophthalmologist but have been given a provisional date for surgery. Is this normal I can not find any local physician who knows anything about this condition,my usual gp on long term sick leave but my other gp whilst empathetic admits iih is outside his remit of knowledge and doesn't know how to help me. I have written to my ent consultant listing all my symptoms and concerns my gp has done the same that was 10 days ago but no answer as of yet.I am worried that my leak will be repaired but my iih symptoms will remain I want my life back I cant work and the financial implications of this just add to the misery for my family . I have however seen a endocrinologist who wants more scans bloods etc to address my empty sella syndrome but even that consultant knew nothing about iih I feel like screaming I have been left in pain deteriorating vision tinnitus back and neck pain extreme lethargy and horrible side effects from diamox. I hate who I am becoming a moaning miserable women who is no fun to be around I try so hard not to let it beat me and stay positive but every day find it a little bit harder to smile. My poor family .
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medmisfit
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PostSubject: Re: me again   Wed Apr 09, 2014 6:09 pm

I don't know much about CFS leaks, but it seems like the need for surgical intervention is rare. From what I've read most cases are spinal tap, surgery, or injury related and resolve themselves in under a week with rest. Obviously your case is more involved. It looks like lumbar drain is the typical treatment, so hopefully it will work! A leak can cause very intense pain and symptoms, so things will also hopefully be more manageable once they repair the leak.

The ENT has always been the one to check me for leaks, so I don't think that's odd. I would definitely make a list of questions regarding the leak and procedure for ENT, then ask about referrals to neurologist and ophthalmologist once this issue has been addressed.

Take care, and keep us posted!
Julie
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Heidi
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PostSubject: Re: me again   Wed Apr 09, 2014 8:03 pm

I have to admit I'm not sure what the procedure is for a CSF leak, but I have managed to find you some information about it, there is a UK website which I think you will find very helpful CSFleak.info
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Wylee
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PostSubject: Re: me again   Thu Apr 10, 2014 1:39 am

Here in the U.S., a CSF leak is confirmed through a myelogram, a CT Scan done with a dye injected into the spinal column fluid.  A "blind" leak can be patched, if the hole(s) is small enough just through the use of a blood patch.  Fibrin glue is often used if a blood patch doesn't hold.  If the hole is too large for these types of repair, surgery may be needed to seal it.  If the hole is believed to have been caused by high ICP, measures would be required to keep the pressure lower so that another hole doesn't form.  It is possible for holes to occur spontaneously.  Trauma, an unclosed hole after a spinal tap, even something like an infection can cause a hole in the inner ear or sinus cavity.  It is important, from what others have said, to find the location of the leak to then be able to treat it.  
I had a lumbar drain test done in 2011 before I had my shunt installed.  It allowed spinal fluid to drain at a preset rate.  I wonder if your docs are thinking that if they keep your ICP lowered artificially it will give whatever they use time to seal.  But what will happen after that?  What are they talking about doing to keep you from developing another leak?  
Unfortunately, many of the symptoms we feel as high ICP are the same as low pressure.  Laying flat will ease the symptoms of low pressure, not much can be done for high pressure.  Low pressure symptoms do tend to be worse, more intense than high pressure.  But neither is good.  Finding that magic zone where the pressure is our own private "normal" is the ideal.
There is a very active group on Facebook for icf leakers:  www.facebook.com/groups/csfleakers/
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lisap

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PostSubject: Re: me again   Thu Apr 10, 2014 11:58 am

thank you yet again for replies. I have already had one csf leak repaired that failed due to high icp.This led to my diagnosis of iih the initial thinking being leak caused by an assault at work. the initial leak was above sinus cavity and small amount brain tissue prolapsed into cavity I had to have tissue graft and mesh. my problem is after new graft repair and lumbar drain removal what is going to stop a further leak or my icp shooting up and no doctors seem to listen to my concerns I have had no neuro consult no follow up with ent since surgery I just seem to be going around in circles,chasing my own tail my gp tries to help but as I have said he feels out of his depth himself he has written letters but has had no response himself. I don't want a shunt, but I want to have a chance of being rid of these symptoms I have that seem to be getting worse as time goes on. I know what low pressure headaches are like from first round of surgery the headaches i have now are different, they wake me at night. I do not remember the last time I had a full nights sleep. Thank-you Heidi for your links re empty sella syndrome, it answered many questions and made some of how I have been feeling make sense it also prompted me to actually speak up and I am now undergoing tests to see if my pituitary gland is actually working as it should so a very big thank-you for taking the time to help me. And Wylee thank-you also for the facebook link and you have bought up all the questions I have myself so maybe I am not going mad !!! well madder than my norm . This site has become a real lifeline for me having others not judge or think here she goes again I don't have to pretend on here the outside world is alot less understanding. I appreciate all the responses I have every single one helps.
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medmisfit
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PostSubject: Re: me again   Thu Apr 10, 2014 4:45 pm

I'm glad the information and links have been helpful, but can completely understand why you feel so lost and frustrated. Can't your GP make a referral for neurologist or ophthalmologist? If ENT isn't answering your questions, maybe one of them would. Definitely get your list ready and have it available for your next conversation with the ENT..even if it's just prior to surgery.

Hope you find some relief soon!
Julie
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lisap

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PostSubject: Re: me again   Thu Apr 10, 2014 5:02 pm

That's my problem Julie. I have been referred to a neuro consultant who has proposed surgery initially a vp shunt and a csf repair. now just csf repair with lumber drain. all of these decisions have been made without a single face to face consultation. I have tried to contact my ENT consultant multiple times unsuccessfully and i'm not sure where to go from here. I do not want surgery without a single consultation.

Lisa
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medmisfit
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PostSubject: Re: me again   Fri Apr 11, 2014 3:12 pm

Sorry, I thought you said you hadn't gotten a referral to neurologist or ophthalmologist. Have you tried NHS Choices? Go to our Recommendations for You section for the direct link and further info.

Good luck!
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