hi all

im emma im 29 yrs old.

i had a decompression of the foramen magnum in aug 2012 and have had problems ever since.
i had 7 addmissions to hospital in the space of 4 months. i had 4 lumbar punctures to alleviate the pressure in my head and my pressures were never below 26. it was decided that i should have a lumbar shunt fitted which i did on 26.11.12 only for it to twist the day the stitches came out so i had to have it re-done :(

i have been getting on okish since few headaches and things. not gone back to work as im not allowed to return to my current job as a cleaner.

today i have had a major headache/migraine so ive been sick a few times. i can feel the pressure building in my head but i am too scared to phone my doctor as im fed up of being in and out of hospital as its a 5 hr round trip to the neuro hosp im under :(

i have joined this forum as i dont know anybody else that as been through or something similar to what i have and i have been given no advice or anything either.

Hello Emma, and

What a rotten situation. A five hour round trip does not sound like much fun at all. I hope that you have someone who can drive you and stay with you at the hospital? If your pressure is building back up, you will need to be seen, and the sooner the better. You don't want you to risk your eyesight.

There is a lot of great info available on this site, as well as many caring members who are here to help you. Feel free to ask any questions, come on board to have a chat, a rant and rave or to add to the conversations. We all have IH, but no two cases are the same. By sharing what we feel and what we have done, we are able to learn from each other. It's a great place to be. So glad that you found us.

hi wylee

yeah i have someone to drive me there and back, if i stay in i send them home as i dont like the thought of them travelling home too late at night. ive been wearing my glasses more lately too so i know theres something going on again but last time i mentioned it to my doc he said to keep a diary of how often i had symptoms etc and only go back if they are too bad. ive taken my pain meds today and ive still got the dull headache,been sick twice too :(

glad ive found somewhere that i can openly talk about my probs and people know what im going on about.

Hi Emma welcome to the group I'm so pleased you found us. You have been through such a lot and I know how you must feel about it all. I am assuming that you also have Chiari and that's why you had the decompression of the foramen magnum, and we do have members who have both IIH and Chiari.
Have you noticed if it eased when you lay down at all? I know you're fed up with the constant back and forth and I don't blame you but it needs checking out. You don't say where you're from but the best thing to do is to contact your Neurosurgeon and tell him what's going on. It needs investigating, and you can't let your raised pressure get out of control, because of the risks.
I was in and out myself for 18 months and it does get disheartening and frustrating, but you have to think of your health and you really can't live with pain like that every day. Please contact your doctor and have him find out what is going on.

Hi Emma, I also wanted to add a quick welcome. I have IIH and Chiari Malformation, so I understand. It can all be overwhelming and frustrating, so hang in there!!!

I agree w/ the others..it sounds like something is off, so I'd definitely call your neurosurgeon. I have a 6 hour round trip so understand your reluctance, but you don't want to get worse! If you're ok w/ the pain, then at least have your vision tested..that way you'll know whether vision has been affected. If it has, I'm afraid you'll really need to make the trek. You could ask the neurosurgeon if it's possible the shunt has affected Chiari or isn't working properly. Maybe they'll order some tests that you can have done near home, and just call you in if there's a problem. You definitely need to follow up if you're not feeling better.

Good luck, and take care!

Julie

morning all

went to see my gp today who thinks i may of had a virus last week which made the pressure build slightly. he said he couldnt see no signs of increased pressure when he checked my eyes etc but said i have ot keep up with the painkillers and just rest. i slept for over 3 hrs yesterday :( if i still feel bad on mon im to go back to the doctors and they will phone stoke hosp and see if i can get seen.

cant stop eating ice pops either lol must be the cooling effect helping. he laughed when i told him that, i dont feel hungry but cant stop eating ice pops and drinking really cold drinks.

hope everyone else is ok.

Hope you start to feel better soon Emma. And keep the fridge well stocked with the cold drinks!

hi all, been to the docs again this morning and he is writing to my neurosurgeon to see if he will see me soon as im getting pressure again when i cough/sneeze/shout or laugh too hard.

hope everyone else is ok.

Emma, that ice thing isn't all that crazy. One of our guys, Austin, finds relief by taking an ice cube bath.

glad im not the only one then that likes ice cold things when got a headache/pressure. been drinking really cold drinks today instead and seeing if that helps more.

Well ice brings down swelling generally, so intuitively it doesn't sound so daft. I hope you get a neuro appointment soon Emma.

Take care

I love my ice water!! I always feel neausea so I think thats why I like it it seems to soothe my tummy.... maybe... but im always carrying around my ice water hope you get things figured out soon :( I know its hard being in limbo!!!

hey guys, have seen the neurosurgeon who is sending me for a ct scan and xray. said summat about removing the shunt but i dont want to do that as i need the shunt and dont want to end up having it put back in as a emergency. still eating loads of ice pops lol.

Did they say why they're thinking about removing it? If there's something wrong with it and it isn't functioning properly, then I get it..just seems odd.

I'm glad the ice pops are still helping though =]

they not sure if im draining too much fluid now :(still not heard about a date for my scan or xray but it maybe sooner as ive just had a knock on the head and feel funny:( ice pops are really helping espec with this heat

hi all sorry not been on for a while. finally gone back to work even though it is only a hr a day for now. going for a mri scan on sunday :(not looking forward to it as i have to have the dye stuff and last time i had a dye scan i reacted badly to the dye :(really dont want to end up in hospital for a while again either just when im starting to feel better. havent had many pressure headaches for a while, fingers crossed they are settling down a bit now and the scan shows i dont need anything doing again so soon.

how is everyone?

I'm so pleased you're feeling better, and that's great progress going back to work! I know it's an hour, but it's a start and it's good to build up at first. When I was working and had surgery, they had what was called an "ease back period" which meant you could build your hours back up to normal over a period of time. It's so much better to do it that way, and not as stressful.

I know what you mean about the dye, it's not a pleasant experience, especially when it makes you feel like you've wet yourself. I will have my fingers crossed for you and I do hope that you wont need to go back into hospital.

Emma, don't forget to have the shunt's valve reset after the MRI.  The magnets in the MRI can change the setting.  Even on the newer valves.
Hope the MRI goes well.

Hi Emma! I'm glad you're feeling better, but understand your concerns about the dye..I just had my MRI on the 6th. I bruised a lot because of a reaction to steroids I was taking, but otherwise it went well. I had to have shunt adjusted following the procedure with this valve, but never had to do it before I got the adjustable kind..it's annoying, but at least it's not painful! They always ask me what kind of valve I have, so you may want to get that info together. I got a print out from one of the techs that describes the valve because they get concerned your shunt can't handle the magnetic force..it can delay your appointment if they're combing through records and Googling the info.  

Good luck and keep us posted!

Hi all, well not too good again :(spent a week in hospital the other week again with raised pressure but as it wasnt stoke hospital they couldnt do anything bar give me a ct scan and speak with stoke about what to do. stoke said they didnt need to see me so i was sent home even though i know and can feel the pressure is raised again :(my head it really hurting to the point of laughing,coughing sneezing etc is killin me again. just want to curl up in a ball and sleep as i find that really helps but ive got so much to do with it being nearly xmas and my best friend getting married in 2 weeks (im maid of honour) may phone stoke and see if they will do a LP again to see if that relieves the pressure a bit until the new year when ive got time to go have another op. how is everyone else getting on?

Oh Emma, I am so sorry to hear you are still having issues with that darn shunt of yours.  I understand your frustration of having to squeeze in time to be seen at the hospital.  What a chore!  I do hope that you will be able to get that lp to relieve pressure until you are able to get another revision.  I would think the docs would appreciate not having to be at the hospital over the holidays.   Just try to take it easy until you get that op.  You have a lot on your plate and need lots of strength to do it.
Wishing you only the best!!   

thanks wylee, to make it worsse ive woke up full of cold so sinus'es are throbbing and head is killing me. :(might attempt to put the christmas tree up tonight too,

hi all, quick update, well as u all know i was ill quite a bit b4 Christmas, saw my consultant end of jan and he said he would like me to tie off my shunt. had the op 14th march and can honestly say i feel great, have had a few off days but nowhere near like b4 Christmas. not holding my breath as i was brill after having the shunt put in for 12 months then i got ill again. so for now im fine

Thank you for the update, Emma.  I hope that you continue to feel better.
Are you taking meds to keep your pressure down?  Is part of the shunt still functioning?  Not sure what it means to have one tied off.

morning wylee, no not taking meds to keep pressure down just continue to take my paikillers as and when needed and my tablets at night to help me sleep. they have just used a small tie and tie the shunt off with a loop to stop it draining, and if i end up with pressure problems again its easier to take the tie off than putting a new shunt in which is difficult given my back problems i have. the shunt is not draining at the mo and i feel ok, few off days but loads better than i was.

I'm glad you're feeling better!!! I think the tie seems like a good idea..hopefully someone is monitoring your condition and will be able to rectify it quickly if any issues arise!

  for a long and pain free remission!!!