hi everyone, well not very happy, again. finally got to see neuro dr at kings, whilst I am sure he is a brilliant man, at the top of his field, dealing with people that have far, far worse medical issues than I have he came across dis interested and made me feel like I was making fuss over nothing. I still need further repair of csf leak after first failed. Initially by phone I was told by phone I needed vp shunt to ensure repair works.Then I was told by letter I would have lumbar drain no shunt. Now consultant says he is not convinced I have iih. I am so frustrated I am in daily pain, I have memory lapses, painful eyes and tinnitus I am so frustrated I tried to ask questions but he was so disinterested I gave up so I am due surgery Tuesday and I do not know what I am having done as he wants to do lp under anaesthetic and then make his mind up what I need I am scared he is going to tell me he cant find anything wrong with me and this leaves me in all this pain with no where to go my gp lovely but not helpful. I try to only worry once things have happened this has been a nightmare so far getting this far and I want to feel like me again.

Oh Lisa, this is so scarey.  I wish I knew more about your health system so I could suggest something for you.  Personally, I would not agree to allow surgery by such an surgeon, especially giving him full rein while you are out.  I hope you have family/friends who will be there who will be able to speak on your behalf.

hi Lisa,

you need to ring PALs straight away. go to you nhs website and type in you local page and get your local PALs telephone number. explain the situation. they might redirect you. there are PALs for each NHS area, but they are there as a liaison service to help with situations where you have questions or are unhappy. you should not go into surgery with unanswered questions. could they help to arrange a pre-op appointment with someone else there with you that could answer some more questions before any procedures were carried out? you do not have to agree to have anything done under anesthetic that you dont want to, but i dont know if the delay might mean a long wait for another appointment so you need to have some more information to make up your mind. PALs might be able to advise on this. I just used them myself to hurry along a consultant appointment with my new neurologistat the Queen Elisabeth Hospital that had dragged out for 8 weeks and they were excellent - i wish i had got in touch with them sooner. Good luck and i hope everything works out for you.

Keren

print out this paper
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and bring it to your doc.  75% of people with chronic fatigue syndrome have improvement of headache upon removal of CSF, even though only 20% of them met criteria for IIH.  introduce reasonable doubt about the accuracy of his criteria for determining whether or not you have IIH.

he sounds burned out, if he can't show concern for his patients.  surgeons get like this.  I also would not feel confident in him, and a second opinion is called for.

Lisa, what happened today??

THANKS ALL  my surgery was cancelled they forgot to call me for pre op assessment even though i asked about this during my consult now they want me to have a mrv scan to look for causes of headache as consultant does not believe i have iih despite my last lp opening pressure being 36 this whilst on 1000mg diamox and having a csf leak also i have empty sella syndrome which is indicative of raised icp so scan booked for 12 th and pre op on 15th i presume if scan indicates i need surgery consultant does not trust my opening pressure he said i probably moved during procedure to raise result i have no recall of moving.starting to believe i have imagined all of this maybe i am mad, tinnitus getting worse headache not awful today but still there just want answers, would be so happy if this is not iih and an easier answer to my symptoms but i have had so many diagnosis thrown my way and ruled out i know others on here have had uphill battle getting diagnosed but i really  don't think i can cope with much more this has had such a huge impact on every aspect of my life my families lives, physical, emotional and financial and yet again i feel i was judged on immediate first meeting, as not size 0. i am scared that if i complain at this stage to pals that my path will be even harder after all what consultant wants his expertise questioned i don't understand how i can be treated with such an uncaring attitude i was told about all these further  tests by receptionist at my gp surgery no explanation as to why i need them have left messages with every point of contact i have at kings but have had no response. i so want some good news to post on here i am not normally a winging Mooney person but i have nothing nice to say i don't tell my family anymore how unwell i feel at times, i just do my best to be invisible to them all when it gets too much. i worry i will be told i am imagining this because i am depressed but i sure wasn't at the start of this i had a nice life was happy with my lot enough of my moaning will keep you up to datex

Lisa, please do not worry about what you say here on the site.  We understand, all too well, the feelings that you are describing.  We are here for you.   Keep fighting, and don't be afraid to speak up.  You have every right to receive full explanations of what is going on, what the tests are, why they are being ordered, and what they hope to find. 

Come to us to speak freely.  No judgements here, we just try to listen and offer suggestions and encouragement.  We are your extended family.  I hope that the tests will go well and that you will have a better diagnosis very soon.  And, keep in mind, there are no clear symptoms of IIH.  Each person can be just a bit different, so an opening pressure of 36 may actually be HUGE for your body (22 is way too high for me - my brain prefers 10!!). Hope you start feeling better real soon.

Hi Lisa,
please dont worry about getting things off your chest here! you need to be able to get things out and be free to clear your head! dont bottle up your feelings or your worries. we understand your doubts and your troubles and know how much this condition 180's everything in our lives.
Think about ringing up the pals for a chat. They are not just a complaints department, although they can be used like that, they are a liaison service. You dont have to ring up trying to get consultant to change his diagnosis, but explain that you dont really know whats going on because of all the changes, you have questions that you cant get answered, you have worries and you aren't sure what the correct procedure are. you have been leaving messages but no one has been getting back to you. and your home life is suffering and this is the kind of patient support they are supposed to provide. dont feel that it would make your life harder if you approached it that way. I dont know if that helps you - i didnt know much about them before - but i think in future i might just ring them first just to see what they can do whenever i have a problem. Hope things work out for you!
Keren

I'm sorry 36 is pretty high and moving would not have raised it.  that is just plain abusive.  definitely try to get a second opinion.  the MRV is a good idea if it hasn't been done before, I think it is a necessary work up to determine if there is a demonstrable cause for the IIH.  but if negative it does not rule out IIH.  I hate to say get another LP after your leak but you may need to in order to prove to this neuroidiot that you have IIH.  jeez.  the empty sella should be enough.  that's why I think, get a new doc.  how much could he know about this, to treat you properly?

I agree with Deb and would at least ask for a 2nd opinion at this point. 36 is high, no matter your tolerance. And, you cannot change pressure by moving! They can make it lower by screwing it up and leaking fluid, but you cannot purposefully change your pressure..he's an idiot! It seems like he's also focusing on the weight and it's not even a factor in a lot of cases. I personally gained a ton of weight AFTER diagnosis. You really need a physician that listens or will at least communicate with you.

Please contact PALS if you don't make any progress within the next couple days..they are there to support the patient and may be able to get you a new referral if you tell them about the mistreatment.

I'm so sorry there is such a bias with this disease. I'm not sure why the ignorant are still allowed to practice!

hello everyone  I want to thank each and every one of you. your responses have made me feel sane again. confession this Dr made me feel so bad I came home and researched Munchausen's syndrome I was questioning myself that much, needless to say I don't fit the profile lol  I was up at kings yesterday for pre op and asked to talk to a dr re plan of treatment but was told no one available so today I will be contacting pals for advice and just hope I get some help and that it doesn't effect my treatment plan or lack there of. I have received confirmation in the post that my consultant does not believe I have iih but no explanation as to what might have caused my empty sella or csf leak or what might be causing my headaches neck pain etc . I googled my consultant who apparently is considered the very top of his field world wide !!! very confused still. does anyone else experience severe lower back pain with iih or is this something unrelated? again thanks all xx

Yeah, I even had an expert that presented at the IHRF conference tell me there was nothing wrong with my shunt. I went to Cleveland Clinic and found he had tested me wrong for 3 years! The surgeon at Cleveland Clinic replaced my shunt and the issue miraculously went away. I don't think there's enough research for any one of them to be considered an expert in IIH, so just keep looking until someone finally listens.

If you recently had LP or LP shunt, then lower back pain could be related. In that case follow up with doctor that performed the procedure. Otherwise, I'd follow up with GP.