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Diagnosed with iih I never heard of it before

Posted , 3 users are following.

rubeena26947
rubeena26947

Hi I was diagnosed IIH in December had no idea what it was had 2 lumber puntures eye test so many appointments with neurosurgeon. Can we recover from it if we loose weight that's what I'm being told any advice

0 likes, 10 replies

10 Replies

  • sarahcass40
    sarahcass40 rubeena26947

    Posted

    Hi,

    I was diagnosed Feb 2016. Have had a load of lumbar punctures and I’m on my second VP shunt. Had bariatric roux en y gastric bypass surgery end of Jan this year, dropped 5 stone so far, not felt any different yet. The neurosurgeon I’m under said to give it 12 months post bariatric surgery to see if there’s any change in my IIH. He believes there’s a chance the IIH will improve and possibly go away altogether. I will let you know if it alters anything. You might find www.iih.org.uk useful and take a look at Birmingham university clinical trials on weight loss vs iih.

    Take care,

    Sarah

    • rubeena26947
      rubeena26947 sarahcass40

      Posted

      Thanks for the answer tell me did the shunt really help and did u have any problems with it health problems good luck with the weight loss and I hope u get better and cure completely
    • sarahcass40
      sarahcass40 rubeena26947

      Posted

      Hi,

      I had my first vp shunt put in on 20th April 2016, I’d been home a day and noticed my tshirt was wet across the bottom of it at the front. Changed my tshirt and the next one was wet through almost straight away. Didn’t realise the wound across my stomach where the catheter end to the shunt disburses the CSF was leaking through the staples. Rang the neuro ward which I’d been on and they told me to come straight in. Turned out the tube had come adrift and taffled up and blocked, they operated straight away and put another shunt in. People can go years without having their shunt changed, some people have them changed more often, it’s just one of those things. Since the shunt has been in the swelling of my optic nerve has decreased significantly, my right is nearly clear but the left still has some fuzziness to the disc. So it has saved my sight. The symptoms I get every day are dizziness, head pain if I sneeze, bend over or cough etc, balance issues, really bad concentration and short term memory is bad, feels like I’m trying to think through soup most days. Tired all the time. I went back to work too soon after the shunt op (3 months), really should have given it a good 6 months. It took a long time to get used to the shunt being there. I have nerve damage around the scar on the back of my head, so it hurts if it’s touched or laid on etc. I still take acetazolamide 250 morning 500 evening, and the usual pain relief every day. It’ll be 2 years in April that I had the vp shunt put in, it’s taken a lot to get used to but I don’t regret having it done. I had to, I would have lost my sight. It’s scary stuff at first, I googled the hell out of IIH, watched videos on YouTube for shunt operations and tried to educate myself as much as possible.

      I hope everything goes well for you. Will let you know if the weight loss helps any.

      Sarah

    • rubeena26947
      rubeena26947 sarahcass40

      Posted

      May God give u courage to deal with it I always thought shunt made it easier I'm not sure about getting back to normal in life but complications just occur and we are not preparer from them especially if we have never heard of iih ever I'm glad he sight was saved and may ur health get better god bless

  • Mrs_F.S
    Mrs_F.S rubeena26947

    Posted

    Hi. Which country are you from. I have lost alot of weight and still have iih. Had a shunt put in last year and stil suffer with symptoms. It does help to loose weight but does not cure iih. Are u on a birth control pill.? We were recently discussing that certain brands of birth control could be the cause of iih or symptoms worsening. So be careful.

    • rubeena26947
      rubeena26947 Mrs_F.S

      Posted

      Hi I never went on birth control i did have alot of steriods because of asthma attacks and chest infections and yes I'm overweight obese.going on a strict diet to loose weight hoping my iih improves or goes away well I wish

  • Mrs_F.S
    Mrs_F.S rubeena26947

    Posted

    Good luck with yout weighloss. Im from south africa. Going for my 4th surgery for my shunt in this month. Iih is a difficult illness. I hope it gets better for all of us. Its a daily struggle. But with proper diet and meds we can beat this battle . Stay strong. Inshallah
  • Mrs_F.S
    Mrs_F.S rubeena26947

    Posted

    Hi. Hope u are doing well. What ever decision you take moving forward i wish u all the best amd hope all goes well. Not sure what you replied preciously but your comment has been deleted. Stay strong. We can fight this sickness.
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