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 My Daughters IIH

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Laurie1266
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PostSubject: My Daughters IIH   Wed Nov 16, 2016 6:49 pm

My daughter was diagnosed with IIH in October 2015. Since then it's been a rough ride. She started University this past Sept but has missed time in the past month due to two vision loss episodes with accompanying migraines. They will not perform another Lumbar puncture - her last one was in March with an opening pressure of 27. She is on 4 grams of Diamox/day and Toprimax and these do not seem to help with keeping the CSF in check.We now await another neurology appointment and discussion of the next course of action which I suspect will be surgery for either Optic nerve fenestration or a lumbar shunt. I am concerned about the idea of the surgeries and have read both the pros and cons of each one.
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Heidi
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PostSubject: Re: My Daughters IIH   Thu Nov 17, 2016 3:24 am

I fully understand your concerns about surgery. There are as you say Pros and Cons, and I'm sure you've read other sufferers experiences with surgery. They usually perform surgery when eyesight is at risk,  and medication alone isn't managing the csf. We are here to answer any questions you have, as some of us do have shunts and expecpeeienced LP shunts. We have lots of information on shunts and other surgeries ect, and booklets. Are you in the U.K.? I. An send hard copies of our booklets if you are. If not you can downloaded thsm [url=t1364-iih-information-booklets]IIH Information Booklets[/url]

What concerns you most about the surgeries and what cons worry you the most?
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Laurie1266
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PostSubject: Re: My Daughters IIH   Thu Nov 17, 2016 4:21 am

Hi Heidi, I am Canadian. So we have pretty good health care coverage. My daughter has lost considerable vision. She use to have near perfect distance and just required light readers. By the time she was diagnosed her vision was 20/70 and 20/200. without glasses. The prescription they gave her corrected to about 20/50 in both. She just had her last vision test and they discovered she now has astigmatism . And the glasses corrected to 20/30 until last night when she had her last visual disturbance. Now it's back to 20/70 with the glasses. She also has 45% of her fields left, light sensitivity, doubling vision and some colorblindness. With the ONSF it would help save the vision but do nothing for the daily headache pain. My main concern is the chance of total blindness. With the Lp shunt I am mostly concerned with blockages, infections and redo that may occur.

All she wants to do with her life is travel and teach English overseas.
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Laurie1266
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PostSubject: Re: My Daughters IIH   Wed Dec 07, 2016 5:44 pm

Update on my daughter. She saw another neurologist today as her regular one is on vacation. Her optic nerves are swollen. He has sent her to emergency for a consult with a neurosurgeon. This is her exam week at University so it's been difficult. She can't seem to retain anything . She has gone from an honor roll student to almost failing . Her vision is now 20/200 and 20/100 without her glasses and not much better with them.
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IIHAmatuerAdvice
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PostSubject: Re: My Daughters IIH   Sat Apr 15, 2017 1:49 pm

I can relate to your daughter, Its difficult to focus on school with this condition.  I had to stop and
my math skills had been greatly affected at the time.
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IIHAmatuerAdvice
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PostSubject: Re: My Daughters IIH   Sat Apr 15, 2017 10:44 pm

personally I don't think she should be make the attempt to finish but should be let go on emergency leave.  When this had happen to me.  I could barely see the board much less keep track of my thoughts.  I am sorry to hear about her.  I hope she's given the best treatment


Last edited by IIHAmatuerAdvice on Sun Apr 16, 2017 1:24 pm; edited 1 time in total (Reason for editing : theres no blackboards in college)
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medmisfit
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PostSubject: Re: My Daughters IIH   Mon Apr 17, 2017 6:23 pm

How is she doing Laurie?
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PostSubject: Re: My Daughters IIH   Sat Apr 22, 2017 11:42 am

I hope she is doing ok. My daughter has had IIH for 9 years and has a vp shunt 4 years ago. There is no end to this disease it has been the longest road travelled emotionally financially and she has seen many drs neurosurgeons opthamologists as she has vision problems and now her ears are creating havoc. We both have got to the stage where she is getting sicker. I as a mum am not coping at all anymore. It all becomes so hard and I watch as the lastn9 years have nearly destroyed her she has lost friends and family along the way as no one wants to invite her anywhere anymore as her life is consumed with this illness. I ask are there any other mum's not coping like I am. There is only my daughter and I as I am now widowed and she has no siblings and most of our family have passed away. I just need other people to talk too this is the first time in 9 years I have reached out
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Sophiasmom
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PostSubject: Re: My Daughters IIH   Sat Apr 22, 2017 5:33 pm

hi, I have IIH and my son also who is 9 years old and has autism.  we are mildly affected compared to your daughter.  I am technically in remission since jaw surgery.  but autism and our chemical sensitivity brings similar challenges of having difficulty making and keeping friends, and we have lost family too because our illness is "invisible" and people question our sanity.  because ours is mild, no vision problems and we don't qualify for shunts.  so my son was denied treatment for awhile by his father.  he is much better with treatment of his sleep apnea, and he takes Diamox and goes to an osteopath which really helps.  I have to home school him, and his behavior is a constant struggle.  I can't find a babysitter who is willing to give up her scented products to work for us.  we can't have people over and it's difficult to go anywhere, so we are isolated.  it helps to connect with others on the online forums.  how old is your daughter?  it sounds like her IIH is not stable at all.  maybe it's time for her to get a second opinion.  my expectations for life have really altered, and that helps to not feel depressed with what's happened.  maybe she can find friends in a support group of other people who also struggle with health issues.
Deb
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Laurie1266
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PostSubject: Re: My Daughters IIH   Thu Jul 27, 2017 8:36 pm

medmisfit wrote:
How is she doing Laurie?

She was doing OK for a while. Her Neuro Ophthalmologist decreased her Diamox but her migraines are worse and her vision is blurry. She went to Emerg this week and had a MRI and she has increased pressure again - Optic nerves are swollen and there is CSF in her eyes. Since she sees the Neuro Ophthalmologist next week she will discuss with him what to do. She turned 19 last month so I don't have a say on her medical anymore.
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medmisfit
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PostSubject: Re: My Daughters IIH   Fri Jul 28, 2017 4:46 pm

That's frustrating and has to be hard to watch now that she's an adult. I'm guessing that her pressure is up and she's struggling again because they decreased her Diamox. I don't know why physicians insist on messing with levels when people are doing well. Was she having severe side effects or have they talked about increasing Diamox back to therapeutic level? I'm sorry she's having to go through it all again, but I would start with asking if they've discussed going back to dosage that worked for her.
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Laurie1266
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PostSubject: Re: My Daughters IIH   Fri Jul 28, 2017 7:40 pm

She only has tingling in the hands and feet from the Diamox. The hospital neurologist told her to increase dosage to 750mg 4x daily. Originally she was on the max. dosage - 4g/day - but it was dropped to 2g/day. She sees her Neuro Ophthalmologist next week but her migraine is has increased since Monday and she can't even sleep because of the pain. I think I'm going to have to take her back in and get Lumbar puncture done. and that will mean a week on her back - they affect her badly but afterwards she's much better. I know they don't want to talk about a shunt right now but I am beginning to think that's the best way to go.
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Laurie1266
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PostSubject: Re: My Daughters IIH   Fri Jul 28, 2017 8:29 pm

IIHmum wrote:
I hope she is doing ok. My daughter has had IIH for 9 years and has a vp shunt 4 years ago. There is no end to this disease it has been the longest road travelled emotionally financially and she has seen many drs neurosurgeons opthamologists as she has vision problems and now her ears are creating havoc. We both have got to the stage where she is getting sicker. I as a mum am not coping at all anymore. It all becomes so hard and I watch as the lastn9 years have nearly destroyed her she has lost friends and family along the way as no one wants to invite her anywhere anymore as her life is consumed with this illness. I ask are there any other mum's not coping like I am. There is only my daughter and I as I am now widowed and she has no siblings and most of our family have passed away. I just need other people to talk too this is the first time in 9 years I have reached out

I am so sorry to hear about your daughter. I am not at the stage where its hard to cope but I do see her going in a downward spiral. She is in that unfortunate 10% that medication doesn't seem help. Currently she has not lost her friends and is in the process of moving out for school in Sept. I only hope that she can cope and that this doesn't ruin her.

Anytime you need to chat let me know.
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medmisfit
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PostSubject: Re: My Daughters IIH   Mon Jul 31, 2017 5:06 pm

Keeping my fingers crossed and hope the increase of Diamox will start to help again. I fought the VP shunt for a long time, but have been a completely new person with it. It's terrifying to think and read about, but really hasn't been bad. Let us know if we can do anything to help Laurie!
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