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lisap

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PostSubject: little update   Fri Jun 06, 2014 12:50 pm

hi everyone,  well where do I begin as you know from previous posts I am waiting surgery for csf repair. my initial date was cancelled as they forgot to call me for pre op assessment. I eventually had assessment and my blood glucose was elevated so had fasting test which came back normal but haven't heard anything since other than letter from my consultant stating he does not believe I have iih because when he saw me I had no papilledema I was on Diamox at the time of examination, he believes my eyesight deterioration is due to age changes despite it being sudden. I am off Diamox as side effects severe I couldn't tolerate them anymore but no alternative offered as he does not think I have iih despite empty sella syndrome csf leak and last lp opening pressure 36 and severe headaches eye pain and tinnitus.he believes head pain is low pressure but prior to my first surgery I had low pressure headaches they improved laying flat and drinking high caffeine drinks my headaches now are almost worse lying down. i  have contacted pals they recommended I go to gp for further investigations to find the cause that we can all be disillusioned when we don't get the answers we want .I don't want to have iih I want to be well my head feels like some one has hit me around the back of my head gp really is no help just gives me pain relief that doesn't work just makes me feel fuzzier than normal . I am scared that this is it this is my life that I will just have to live in pain. I have been off work for nearly a year I am scared they will sack me financially we are struggling managing just but its hard ,another worry. They say we are never sent to much but I feel like one more thing and I will break. we got burgled last weekend during the night so I kinda have had my fill it is so hard to find the joy at times I know I am lucky to have the most wonderful son and my partner . so here's what I am asking, reading this do any of you think that my symptoms  could be down to anything other than iih or like me do you believe this sounds like iih I know we are not doctors but out there on internet land you all have such a wealth of experience far more than any book can teach the drs this site has become my lifeline so thankyou one and all without you all I would be lost  Help and  thank you  thank you  thank you      LISA
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Sophiasmom
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PostSubject: Re: little update   Fri Jun 06, 2014 4:25 pm

the docs are full of it, you have IIH.
1) OP 36
2) CSF leak
3) empty sella

hello?  you can lose vision without pap.  if you have a CSF leak then they need to do something to decrease your ICP or you are just going to spring another leak.  if he thinks you have a lower pressure now with the leak (which they need to fix or you are at risk for meningitis) then he needs to prove that.  do another LP.  I think it should be malpractice to fix the CSF leak and do nothing about the high ICP that caused it in the first place.

take heart that this kind of incompetence happens all over and not just to you.  I don't understand why the docs manage this illness so poorly and make such bad assessments.

I'm so sorry about the break in.  I too seem to have way too much on my plate and wonder wth god is thinking.
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lisap

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PostSubject: Re: little update   Sat Jun 07, 2014 1:08 am

Thankyou so much I had started to think I was going mad I have had the leak repaired once already 3 days later I was in more pain than I knew was possible and was emergency admitted where no doctor knew anything about csf leak repairs or raised icp so repair failed and I began leaking again the last time I had lp  I was leaking on Diamox and still had pressure of 36 I have researched a neurologist in uk who specialises in iih so I am going to e mail her and see if she might help .sorry that you your self are having a hard time but maybe we are sent these things as we are strong and we do cope somehow but I wish him upstairs would maybe let me know the bigger reason but there are so many in far worse situations and I am grateful it is me going through this not my son or others that I love.
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PostSubject: Re: little update   Sat Jun 07, 2014 6:52 am

yeah.  I'm better and I'm so grateful, but my son has it too.  and I don't know how to help him.  we have lower pressures, 23, so the docs think that they don't need to do anything about it because he doesn't have pap.  but you can't get an accurate visual field on a 6 year old so how do they know?  and he has autism, and he is less autistic after his taps.  but they don't listen to me.
sounds like the accidental cancel was not an accident and that the guy upstairs IS looking out for you.  get a second opinion.
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PostSubject: Re: little update   Sat Jun 07, 2014 10:45 am

Lisa, 
I asked my GP to refer me to Dr Alexandra Sinclair fo a second opinion when my nuero turned out to be rubbish, she is patron for IIH UK and a consultant at the Queen Elizabeth Hospital in Birmingham (see the IIH UK web page http://www.iih.org.uk/trustees ) Using PALs i got them to hurry me through an appointment - but you should be aware that they only run 1 IIH surgery per month!!! so the waiting list is fairly long - i applied in feb and my appointment will be June. But maybe PALs can help you out too???, they can find cancellations and spaces to squeeze you in...
~I havent seen her yet but she should definitely be in the know about the condition if anyone is...
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lisap

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PostSubject: Re: little update   Sat Jun 07, 2014 6:51 pm

sophiesmom you sound like you have a lot going on I admire you for being so positive and always having time for others on here with a friendly word and such wonderful advice so thank you from me . It must be so very hard having a precious little one with so many issues I just cant imagine what he must go through so young.Keren do you mind me asking who your first neuro was and where is he based Dr Sinclair is the neuro I researched and whilst Birmingham a long way from me I am on the kent coast it would be worth it to know I was being treated by someone who knows everything there is to about this condition because I really am becoming beyond desperate.
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PostSubject: Re: little update   Sun Jun 08, 2014 7:39 am

you're welcome Lisa.  I really hope that you can get some appropriate medical attention.  it frustrates me so much to see how prevalent the mismanagement and misunderstanding of IIH is all over.  there really is a lot of controversy in the field, with those in one camp not knowing anything about what those in the other camp are thinking.  I have been able to figure out a lot for myself because of my background so I feel obligated to share my knowledge.  I don't always get on this site but you can always PM me if I am not around, that will go to my email.
Deb
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Keren
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PostSubject: Re: little update   Sun Jun 08, 2014 12:28 pm

Hi Lisa, dont think you have to worry about running into my first neuro, he is not an IIH specialist. He was just a normal neuro at Northampton General Hospital - Dr Paul Davies. competent enough to diagnose IIH with an opening pressure of 36 with no pap. but thought 1g diamox was the max does, and refused to treat me once my pressure was 24 despite my continued headaches. He insisted my headaches were migraines because they were often one sided despite me telling him they were crushing vice on the temple, stabbing to the top of skull and eye and sinus pain - all my classic IIH symptoms. (one of those who thought anything under 30 didnt really need medication) I had to get my GP to raise my diamox to resolve them. then he back peddled and said he would keep an eye on my pressure from now on. but i am not going back to him now i will wait to see Dr Sinclair at the end of the month. I have (had?) thyroid issues and kidney problems is my other complications is why i also asked to see the specialist, or i would probably just have had to try AN. Other normal neuro. 

 Smile  best of luck


Last edited by Heidi on Mon Jun 09, 2014 6:08 pm; edited 2 times in total (Reason for editing : linking to other websites)
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lisap

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PostSubject: Re: little update   Mon Jun 09, 2014 5:27 pm

Keren do you have empty sella I know that that can cause thyroid problems my headaches are not atypical of iih I have pain around the back of my head into temples it feels like someone has hit me around the head with a plank of wood. I also have bi lateral tinnitus and pain behind my eyes . I will do as you suggest to try and find someone local as my neuro is not a specialist in iih either , my case is slightly complicated by my need to have a csf leak repair which needs to be done sooner rather than later under shared care of ent and neuro so if I change one chances are I need to change both and my ent is so lovely and has my confidence 100% .I find this journey so awfully confusing and don't know what to do for the best wish I could go to sleep and wake up when its all sorted ,I need to make the right decision but I don't know what that is, but I really didn't feel confident with my neuro on my one and only consult maybe I miss judged him but that does not explain the letter explaining I don't have iih .
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PostSubject: Re: little update   Mon Jun 09, 2014 6:18 pm

Lisa I wish that there was an end to this for you and very frustrating. You could ask for someone who has more experience with IIH, and it shouldn't affect your ENT, as he should be liaising with who ever is treating you for this problem. There may be someone who is more capable and you  do have a right to a second opinion. Have a word with PALS at the hospital who can help you find a resolution to this situation that you're stuck in.

You could also get in touch with our partners the Brain and Spine Foundation, who will also be able to give you advice.

Bear in mind that being referred to another hospital is not always possible, as tertiary care is only given if there is no one at the hospital who is able to treat of deal with your case. Plus there is the cost of one Health Authority billing the other if you are treated elsewhere, as you may know in the health system, it's all about figures. cost and statistics.

Please keep us updated and I really hope that you see an end to this.

Heidi hug
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Keren
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PostSubject: Re: little update   Mon Jun 09, 2014 10:17 pm

Hi Lisa, I had a partially empty sella on my MRI so am not sure. I was diagnosed with an overactive thyroid 6 months before my headaches became bad, which set me off looking in to IIH and got me the MRI that showed the sella and lead the the LP for IIH, i know the conditions are linked, but how linked they are in me?? who can say. And yep big pain across the back of head, into temples. but also many classic IIH pains also - coughing, bending down etc. 

Any way - Best of luck with your investigations. Hope there is someone who can give you a second opinion. hope you can get a referral, hope it wont take too long, hope your GP is onside, hope the budget thing doesnt scupper you - lol they dont make it easy for us do they...
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