Author Topic: Will I need a shunt? answers please :(  (Read 1895 times)

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Offline jadexclark

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Will I need a shunt? answers please :(
« on: April 07, 2014, 01:16:25 AM »
Hi, my name is jade.

I'm relatively new to this site so still don't know if I'm asking in the right place or not, but here seemed fitting. I got my diagnosis of IIH two months ago. I had my lumbar puncture done about a month ago, where my opening pressure was 32. My neurologist told me that it was "significantly high" (??) And that I should carry on with the diamox,  which he had already previously prescribed me a week before. I've had my dosage raised since then and I'm not on 2g daily but nothing seemed to be helping.

My headache seems to be getting worse. It's been like this the past 5 days. It constantly feels like my heads in a vice and morning and nights are the worst. I'm in tears with the pain, and I keep getting really blurred vision in my right eye. I'd previously been told by my ophthalmologist that I've got swollen optic nerves, but my neurologist seems to think that the diamox should of helped with the eye problems also. But after a month of being on 2g daily, shouldn't it of been working by now? Is it likely I'll need a shunt? I'm in so much pain that a shunt would probably be welcomed right about now!!!

Thank you in advanced :)

Offline Keren

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Re: Will I need a shunt? answers please :(
« Reply #1 on: April 07, 2014, 10:18:31 AM »
Hi Jade,

I will start this post by saying i am not a medical professional - i can only tell you about my experiences.

I was diagnosed with an opening pressure of 38cm/h2o my neurologist considered this moderately high but not alarming. My MRI showed swelling of my optic nerves but the Ophthalmologist dd not see any signs of papiledema (swelling of the optic discs at the back of my eye balls) therefore despite the blurred vision that i get with a headache, my vision is not considered at risk. (its less likely i will go blind)
My neurologist said that main use of a shunt was to save vision. so it was less likely that i would need a shunt. Headaches while unpleasant did not cause any permanent damage, so did not need surgical intervention. However my vision will continue to be monitored just in case it begins to deteriorate.

I am on 1g diamox and 500mg topiramte but still getting terrible headaches so i had another lumbar puncture to see what was going on. I thought the pressure would be lower but i wanted to know what kind of ballpark the neurologist would take different actions on. I asked if i was still around 30 would he increase my medication. he replied that normally he would not even treat a patient without vision problems around 30 with any medication. According to the modified Dandy Criteria that defines IIH you must be over 25cm/H2O to have IIH.

While i do not agree with his treatment plan (I want medication at 30 thank you very much) - from my experience it would seem unlikely that you would be considered for a shunt at a pressure of 32 and without risk to your vision - just on the basis of headaches. However you need to talk to a neurologist not a GP who is not familiar with the condition.

I asked in a previous post if you might have a low pressure headache. When i first had a lumbar puncture my GP increased my diamox, making my headache unbearable, before we realized it was a low pressure headache and not a return of the high pressure. 2g Diamox is a high dose. Do feel free to ask any questions here but please please do get in touch with your neurologist if you are in that much pain.
Posts by members, moderators and admins are not considered medical advice and no guarantee is made against accuracy. Please see your doctor before taking advice found on the internet.

Offline Bellaj89

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Re: Will I need a shunt? answers please :(
« Reply #2 on: April 07, 2014, 01:02:55 PM »
I think I replied to one of your other posts as well.
I am also not a medical professional!!
I think you need to see your neurologist ASAP, if you have swelling of the optic nerve as well as severe pain the chances are that you  will probably be offered a shunt in the future, if you are really struggling you may need to ask your gp to schedule another lumbar puncture to relieve the pressure but as Keren said you need to make sure you aren't suffering from low pressure symptoms.
It can be really daunting having iih because sometimes it feels like you have to organise and sort out your treatment as neurologists have long waiting lists etc but if you persevere and take a list of Q's with you next time you see the neuro make sure they answer them all etc it will get a little clearer!
I hope this is useful

Offline andreamay

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Re: Will I need a shunt? answers please :(
« Reply #3 on: April 07, 2014, 02:42:13 PM »
Hi there, I can only share my experience and I'm not medically trained, however I would say that it is a very individual illness. I have had this for over 7 years, I had papillodema in my right eye. I have 9 cerebral stents as the veins are narrow on the left and last year they put in a lumbopleural shunt. My pressure was 22! But I had chronic headache, trigeminal neuralgia, dizziness and vertigo, nausea, memory problems.....the list is never ending! Even with the shunt although my pressures have dropped I still have everything else! So I'm no closer to a solution but my brain and eyes are protected with the shunt. Please go back to your neurologist and ask more questions. If your appointment is way off you can phone his/her Secretary and explain and they will bring it forward. Many people have success with stenting, so it's worth considering all of the options, a shunt is a last resort where everything fails. The main thing is to keep you safe and your pain managed. Good luck xxx Andrea :grouphugs
Posts by members, moderators and admins are not considered medical advice and no guarantee is made against accuracy. Please see your doctor before taking advice found on the internet.