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 Lucinda Sara diagnosed 2011(uk-Leicester)

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VDubs
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PostSubject: Lucinda Sara diagnosed 2011(uk-Leicester)   Wed Feb 22, 2012 12:08 am



After years of being sick and doctors telling me it was diet, stress and mental health
Changed my hole life in 2010
In April 2011 after having a headache from hell
By may I was having an lp after being sent to eye a&e
Diamox more lp's and them failing now I'm waiting to meet a surgeon in April
Think they are going to put a vp shunt

Pressure is high but won't go a&e even tho I should as I think csf has been come out of my nose



I also have pcos err im rubbish at this x
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PostSubject: Re: Lucinda Sara diagnosed 2011(uk-Leicester)   Wed Feb 22, 2012 8:28 pm

Welcome to the group, and you did fine..got your point across at least ;)

I'm sorry you've had to suffer so long, but glad they seem to be on the right path now. I encourage you to read the user guides and informational posts prior to meeting with the surgeon. You can also find more information at ihrfoundation.org.

Good luck, and keep us posted!
Julie
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PostSubject: Re: Lucinda Sara diagnosed 2011(uk-Leicester)   Wed Feb 22, 2012 10:56 pm

big welcome Lucinda to the group! You did fine getting your story across.

I think if your in a lot of pain it might be best to go to A&E I understand it can be really scary but just in case something serious is happening it might be worth having a trip there or seeing your GP or giving your Neuro a call.

I hope the meeting with the surgeon goes well keep us informed with what happens xxx

bhug
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PostSubject: Re: Lucinda Sara diagnosed 2011(uk-Leicester)   Sat Feb 25, 2012 10:41 am

I've bugged my doctor over the phone she has upped the gabapentin
Also think she contacted nureoagist as now seeing him 13th next month

Will read up and keep posting randomly on here Smile


Dyslexic & Special

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PostSubject: Re: Lucinda Sara diagnosed 2011(uk-Leicester)   Sat Feb 25, 2012 3:31 pm

Welcome to the group Lucinda and I am so sorry you're having such a rotten time at the moment. We have a booklet on Talking to Your Doctor about IIH This guide has been written based on 22 years experience, and based on imput from sufferers of IIH.

This guide aims to give you advice on how to establish a relationship with your doctor and offers questions that help you to find out as much as you can on his knowledge of IIH, medications and other helpful topics.

I'm sure by reading other members stories and posts you will see you are not alone and there may be information that can help you too.

We are always here for you just like we say on our Homepage so please feel free to have a rant, start a journal in members journals, and make full use of the many forums available to you.

Heidi
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PostSubject: Re: Lucinda Sara diagnosed 2011(uk-Leicester)   Fri Apr 13, 2012 3:06 pm

So I saw the nuerolagist he wasn't bothered and I begged to have an lp and I felt so sick
He said no as I only had to wait a few weeks before seeing nurogrgery
I asked again but how long will it take to get the pressure down
He told me that it should be within a week
So on April 4 I was ready to be told we are going to do this and that on ....
But I didnt I got asked to choose what I wanted errr ok
Then he saw I had no MRI and seem to be less keen about the vp shunt
I was gutted and very confused
Last weekend I was in pain I called the out of hours doctor he basicly I needed wait till Tuesday
So I phone nuerolagy department no to anything as I'm now neurosurgerys
So was put over and asked about could I have an lp no then asked about MRI and told ive been put on ruteen sonits a 6 week wait
Since Christmas I've been in some sort of pain and my eyes are really bad now
Was told to tell me gp so I have but I'm back on a waiting game

Head and eyes are are bad oh well just have to sit and wait xxx


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PostSubject: Re: Lucinda Sara diagnosed 2011(uk-Leicester)   Fri Apr 13, 2012 3:35 pm

Hi Lucinda,

I'm so sorry your having to wait so long especially with your eyes being affected hug A member has said about a pain medication mix that might work http://www.ihaveiih.com/t636-has-anyone-tried-pain-med-combo-it-works talk to your doctor about it and see if you'll be able to take it, it might help while you wait xxx
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PostSubject: Re: Lucinda Sara diagnosed 2011(uk-Leicester)   Fri Apr 13, 2012 8:43 pm

I'm sorry Lucinda..that's soooo frustrating! The combo meds do seem to be working for some members, so wouldn't hurt to check into it..anything to get some relief at this point! If GP or neuro aren't willing to help, you can always go to A&E as a last resort.

Is anyone monitoring your vision? If you see someone like a neuro-ophthalmologist, they may be able to prescribe meds, tests, or advocate for faster service if vision is affected. I know schedules are crazy for surgeons so seems like we hurry up and wait a lot, but if your vision is being affected it does tend to speed things up.

I'm sure you've seen some things posted that help take the edge off for some members..like hot/cold packs, laying at 45-60 degree angle, pressure on your eyes, etc. Keep trying and you might find something that can help you get some rest. Hang in there!!!!
hug
Julie
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PostSubject: Re: Lucinda Sara diagnosed 2011(uk-Leicester)   Mon Apr 30, 2012 11:16 am

If anyone wants to follow my life I've used YouTube my name is VDubsTDi
For most of April I made a daily blog and it helped to make me smile
On the 4 day I met my surgeon then after the bad bank holiday I think found out I had a date
The 8th may...... It's now a week away. And 10 days before my sugery I started my videos again after about a weeks moody brake.

So the videos now will go up slower but the next one will be of my hair cut
I also have my MRI on Friday so it's all go go go


Dyslexic & Special

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PostSubject: Re: Lucinda Sara diagnosed 2011(uk-Leicester)   Mon Apr 30, 2012 1:29 pm

Thank you for posting this Lucinda and Good Luck for the MRI! hug
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PostSubject: Re: Lucinda Sara diagnosed 2011(uk-Leicester)   Tue May 01, 2012 7:28 pm

*hugs* Hi, sweetie! This is your friend @littlemissnonam from twitter ... just letting you know I'm over here, too. Sending you positive thoughts and prayers all the time as you prepare for your upcoming MRI and surgery. Stay strong!
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PostSubject: Re: Lucinda Sara diagnosed 2011(uk-Leicester)   Wed May 23, 2012 4:24 am

As some may know
I had my op on Tuesday 8th May 2012 and by the Saturday I was let out
On Tuesday 15th the staples came out. At most stages I made a video (YouTube: VDubsTDi)

I'm pleased to say for the last 4 days I've ether danced or been on the wii fit

I must say I'm even liking getting fitter and that's not something I'd normaly say

Massive love to all IIHers and a massive thank you to my twitter IIHers and co as without you I would have found it so much harder xxxx

IHaveIIH is the best IIH surport group place charity people I've met xxx


Dyslexic & Special

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PostSubject: Re: Lucinda Sara diagnosed 2011(uk-Leicester)   Wed May 23, 2012 5:36 pm

:well done CONGRATULATIONS!!! I'm so glad you've finally found some relief & are able to move forward..I wish you a speedy recovery & continued success wiith your shunt!

Cheers to pain free days!
Take care,
Julie


Last edited by medmisfit on Thu May 24, 2012 3:19 am; edited 1 time in total
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BananasMom
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PostSubject: Re: Lucinda Sara diagnosed 2011(uk-Leicester)   Wed May 23, 2012 8:28 pm

You're so amazing, Luci! And I'm soooo happy that you're doing so well!! *big hugs* Very Happy
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PostSubject: Re: Lucinda Sara diagnosed 2011(uk-Leicester)   Thu May 24, 2012 1:43 am

Thank you ladies you are so great too xx


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PostSubject: Re: Lucinda Sara diagnosed 2011(uk-Leicester)   Thu May 24, 2012 2:20 am

What wonderful news!! And such a diifference than your earlier posts. Hip, hip, horray!! My your shunt continue to give you a new lease on life.
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