After years of suffering from bad headaches, Tinnitus fatigue and other IH symptoms and being told by doctors nothing wrong with me, I eventually took myself to opticians because of visual disturbances & blurry vision to be told I had pap in both eyes & told I needed to see my GP for an urgent referral to eye hospital. Eventually after a further couple of weeks was diagnosed with BIH. Since then have had a pretty rough road. I have had LP procedure to lower my pressure which hospitalised me for over a week(suspect I had a CSF leak). Had an LP shunt, which then had to be removed because it caused over drainage & a chiari malformation. After further investigation they decided that a bony growth that I had(osteoma) was causing high IH pressures, so they operated to remove it. Within 2 weeks I very rapidly detiorated with severe headaches nausea vomitting & vision blackouts. Investigations revealed I had a blood clot in main draining vein from brain so I had to have a VP shunt put in, which I had hoped to avoid. Since then I have had constant daily headaches & still affected by other IH symptoms. Have had numerous investigations, angiograms, stenting was attempted but failed because of clot. Three ICP bolt insertions. Docs have said not worth attempting any further surgical intervention as they could make me worse than I already am. Despite all this I am still smiling cos I know other people who are a lot worse. I figure I am at least still walking & talking !! Maybe a little slower.!!I won't let this horrible illness get the better of me.

Hello Carol, and

It sounds like you have been on quite a journey. I hope that you will be able to find a better outcome than you currently have. Yes, it could be worse, but I would like to hear that you are feeling a lot better!!
Did the docs attach a programmable valve in your shunt?? That's what they do here in the U.S. to prevent over drainage, and it makes a huge difference. They can even add one as an after-the-fact.

Please feel free to drop in anytime, we need your contagious spirit on the boards. You go, gal ;)

Hi Carol
Wow, what a story. I'm only just beginning my IIH journey, started things off in December last year. I am quite in awe of what you are going through, makes me very grateful for my own situation. If you're smiling, I should be positively grinning. But maybe not today - Post LP headache!
Everyone else on here knows a lot more than me, but I just wanted to say hello as I know how important it is to get responses when you sign on to a forum.
x

Thanks for the welcome from you both yes have been on a journey, but not a pleasant one. On initial diagnosis I was quite relieved after years of feeling unwell to finally have a name for it & thought at least now things would be easier, knowing their was actually something medically wrong with me. How wrong I was!! Once I was diagnosed I came home got on internet & did my research & was stunned to find out how serious the condition was have been given no incling by the doctors in hospital. I soon realised this was not going to be an easy road to recovery, if at all. I read some awful stories of other peoples experiences, and my instincts told me that this was going to be a hard fight. How right I was. Unfortunately a lot of Neurologists just dont know what to do with IIH patients, and to a certain extent its not their fault as there are just not the medications & treatments out there yet to help us. By there own admission the best that they can do is to save your sight by shunting if necessary, but the headaches and other symptoms are harder to control. I could write a book on my experiences but I dont like to dwell on the negatives. I feel as though I have gone round in a big circle and now no better than I was befor I started on my voyage of discovery. As it stands at the moment I have been discharged by all my consultants, because they say there is nothing more they can do. More surgery has been discounted. Unfortunately in the UK a lot of surgeons are loathe to use programmable shunts. Probably due to the higher cost. I think my surgeon is wary of operating on me again. He tells me my situation is complicated because I have small ventricles which makes placing the shunt tubing difficult & also because one operation caused a blood clot. I hope I don't sound too negative. I am going through a particularly bad spell at moment with off the scale headaches again, due to see my GP again soon so will discuss my options. Think at very least perhaps she should drop a line to consultant neurologist to say my situation has worsened. I am more concerned that no one is keeping an eye omy eyes so perhaps that will be a way to start. It shouldnt be up to me to keep paying to see an optician to check if pap gone!!. Hope you are keeping well!! rant over!!

Rant absorbed, hope it helped!
Take care

Hi there its good to get things of your chest sometimes. Its a lovely sunny day after all even if I cant go out & sit in it cos it hurts my eyes & head. Hope your journey is going well & that you have agood neuro on board.

Hi Carol! Welcome to the group! We're so glad you found us!

I'm so sorry to hear about what a rough road you've had so far with your IIH treatments, but I am inspired by your determination to stay positive! I truly believe attitude makes a big difference. I'm from the US, and I am not always real clear about how the medical systems work in other parts of the world ... but it seems odd to me that you've been basically "discharged" by all your doctors at this point when you still clearly have so much going on that needs to be addressed with your IIH symptoms! I'm wondering if there are organizations or other avenues you can pursue to get the treatment you need. Perhaps others here on the forum from your area will have suggestions. But keep up that positive attitude and keep fighting, sweetie!! We're so glad to have you with us and we're here to listen and help in any way we can. *hugs*

Hi Carol and welcome to the group, I am so pleased you found us. You have been through so much and I applaud your attitude and strong determination. You must be so frustrated by all this and I do hope that in the future that your doctors can find an effective treatment for you.

When my IIH became hard to manage despite having two shunts at the time, my Neurosurgeon opted for a subtemporal decompression, then when my sight was still failing he did the other side. I wasn't over the moon about having them and was very worried about what they'd mean for me, but I have to admit four years on and everything is stable, and for the first time in years my optic nerves are pink and healthy.

So please don't give up I'm sure there will be a successful outcome for you in the future. The reason why the surgeons are loathe to use the Programmeable valves here in the UK, is because they are so problematic due to the sensitivity of them. Using mobile phones, cordless phones, even ipads can cause them to malfunction. I had one myself and after 6 weeks it malfunctioned and my pressure went so high it was unreadable.

I have to admit I'm lucky being in Sheffield, as the Neurosurgeons here are very up on the treatments and surgeries for IIH. We even have an IIH clinic. I don't know if they have even suggested subtemporal decompressions to you but it could be something you could explore with them, and ask if they would make a difference if they were possible.

I know of others who have had them done too, and have also found a difference to their symptoms and vision. The subtemportal decompressions create space for the raised csf so it doesn't cause the intense painful headaches or vision problems. Here's my experience of living with them which you might find helpful reading Living with Subtemporal Decompressions

Hi Heidi my surgeon did suggest doing sub-temporal decompression at one point but then decided against it after referring me to another of his Neurosurgeon colleauges. As you know yourself they are very loathe to operate unless necessary & unless your pressures are consistently high even less so. Unfortunately for me because I have had a chiari caused by over drainage of my first shunt they dont like to do LP's on me so its not easy to get my pressures checked out easily, as only other alternative is ICP bolt which they like doing even less because of associated risks of infection to brain. So I am really in a bit of a catch 22 situation, even when I have had bolts in I have had very varied readings sometimes very high sometimes normal & sometimes low.. which is why surgeon is loathe to do anymore messing about with my shunt as he says it is obviously working. I personally have my own theories but too long winded to go into now.

Carol, please do keep up the fight to get better. It's not right that your doctors can be so submissive, so don't let them. Might this be something that PALS can help with??

Carol, I completely understand! I developed Chiari Malformation from overdraining shunt and my levels are all over the place too. Some days I have to sleep w/ my head propped up because it's high and others I need to stay completely flat because it's low..I very rarely find something in between.

The doctors don't want to do anymore adjustments, so I'm also living in limbo and just hoping something clicks. The pollen count is very high here, so now we're trying to treat allergies that I may or may not have. They really just don't know enough about this disease to do anything more than guess. I would love to hear your theories sometime!

I personally have removed all processed food and most animal products from my diet at this point. I'm still allowing myself some cheese to flavor things 1-2 times a week, but majority of my diet is raw plant-based food. I've done the processed thing before, but hoping that taking animal products will help me make some progress..organic and naturally grown is the only way to control what we're eating in the states these days. I honestly don't know what else to do, but keep on trying and hope they'll figure something out at some point.

Attitude definitely plays a huge role, so I hope you stay positive. We're always here if you need additional support!

Julie