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 Claire diagnosed 2012

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claireebear
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PostSubject: Claire diagnosed 2012   Sun Apr 29, 2012 12:32 am

hi everyone my names claires and i was admittited to hospital on the 17th of marcn after going to get a new pair of glasses i am now laid here writing this with a shunt in my my head i had been having headaches for about 1 year on and off which where really bad and had felt totally sick and drained all the time i had been to my docs a few times but had been given the all clear so just carried on as normal the headaches where getting unbearable but because the doc had said they where just migraines i carried on went on the 17th march to get new glasses and was sent straight up to the royal hospittal in belfast where the first time they tried the lumber puncher pressure it was reading 40 or at least they think 40 as that was as high as it would go to ( what ever it is they use to read it) second reading about 35 and 3 35 all with 1 month and all with them draining fluid to bring the pressure back down with each lp everything has went that fast i was told i had iih then i needed a shunt then i woke up after surgery was told placement looked good and sent home and told stiches need to come out 7 to 10 days go to my nurse is this dizzyness normal? and im scared the right side of my face still isnt working or feeling right theres so many questions i have and worrys no one seemed to explain anything it all happend so fast now im sat at home ive tryed ringing the hospital to speak to someone but im waiting on an out paitints appiontment im really sorry about the spelling but with everything thats happend and i cant get my glasses on yet to soar sorry
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Heidi
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PostSubject: Re: Claire diagnosed 2012   Sun Apr 29, 2012 1:32 am

Hi Claire hug

I know how you must be feeling. This must be the most horrible and scary experience for you. I know when I had my first shunt which was an LP shunt, I had a similar thing happen to me, where all the left side of my face went tingly and felt funny. At the time my doctors told me it was just a side effect of the shunt, and that it would wear off, which it did after a week or so. Like you I was scared at the time, because it started as just my chin and spread to all my left side.

The dizziness again could be just your body adjusting to the shunt, but I would give your Neurosurgeon a ring, or get your Doctor out to see you. It's always better to get your Neurosurgeon to see you though just to check you over. He will be able to explain exactly what is going on and talk to you about it.

If you are extremely worried it might be an idea to go to your hospitals emergency department or give them a ring for advice.

Let us know how you get on.

Heidi hug
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claireebear
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PostSubject: Re: Claire diagnosed 2012   Fri May 04, 2012 4:15 pm

hi i ended up back in hospital as when i got out of bed and walked my head was shaking and my right arm and leg they did loads of scans and blood tests they dont know what caused it but it has clamed down and now all i have is the dizzyness my doc said to give it a while it could be my body just trying to adjust to the normal pressures in my head it could have been a small blockage that cleared there not sure i have another appointment for 3 weeks time but i still feel as dizzy as the day i came out of hospital 4 weeks ago or when ever it was but im to scared to tell the doc the truth as i know whats going to happen if i do go back in hospital for endless weeks while the doc arguee with each other over which is the best form of treatment as none really have a clue. They had wanted to do a LP when i was in but i had told them i had wanted it done under xray guildance as with all my past trouble with them and the doc seems to be taken back by me asking for it this way and told me she would need to speak to someone about this 2 hours later she said it would need booked and she couldnt give a time the next morning she sent a doc to try and do the LP at the bed side i told him the same no xray one please later that day another doc same again then that next morning the first lady doc i seen came over to the bed didnt even say hello lifted my charts and without even looking at me said we donnt know when we can get you in for ur LP and left but the very next day a young male doc came and said i could go home well when i heard that i nearly ran out of there
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Heidi
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PostSubject: Re: Claire diagnosed 2012   Fri May 04, 2012 5:02 pm

Claire are you in the UK? If you are in the UK you can contact your hospitals PALS and they can help you to get this sorted out. If you are in the USA you can contact AdvoConnection.com and they may be able to help you. Also read The Wise Patient's Guide to Being an Empowered Patient

Please let us know how you get on or if you need anymore help with this, and we will do our best to help you.

Heidi
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BananasMom
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PostSubject: Re: Claire diagnosed 2012   Mon May 07, 2012 11:12 am

Hi Claire!

Welcome to the group! We're so glad that you have found us, and I'm so sorry to hear about all that you have been through with your IIH since March. It sounds like it has been a really scary time for you and that the doctors who are supposed to be guiding you through it are not being of much help at all. You mentioned Belfast ... are you in Ireland? I'm not sure what the health system is like where you live, but I agree with Heidi ... it seems like you're going to need to get really proactive to get the care you need.

I don't have a shunt myself, but there are lots of folks here who have years of experience dealing with shunts, so I know you'll find tons of support and answers here. Let us know how we can be helpful to you as you go forward, sweetie! *hugs*
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claireebear
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PostSubject: Re: Claire diagnosed 2012   Sat May 12, 2012 2:44 am

just wanted to say thanks everyone for your help and can i just say what a wonderful job you are doing heidi i know there's lots of ppl here helping and comforting people like me but you seem to try to answer every question posted even if only to show that your listening to peoples worries and sometimes that's all we need is to know someone is listening i cant imagine how you find the strenght to come on here and type but im so glad you do xxx and the same for everyone else that has helped anyone on here it is a fantastic site and keep up the good work xxxx any way back to the story
yes i live in northern Ireland same health care as rest of Britain except im not sure the more i learn about this condition the more i begin to think that someone in the hospital was a bit to quick to put the shunt everyone on here seems to have had this for a while i went on tablets for about three weeks in which the dosage was changed once then it was as if they couldn't be bothered with the hassle of it all just put a shunt in and sent me home with no information of any kind of which im quite cross about now that im not terrified
does any one know of any people living in northern Ireland at the min with the condition and do they have a consultant who knows alot about this condition
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huggy
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PostSubject: Re: Claire diagnosed 2012   Sat May 12, 2012 2:48 pm

good luck Claire, take care x
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Heidi
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PostSubject: Re: Claire diagnosed 2012   Sat May 12, 2012 3:51 pm

Claire hopefully some of our other members from your region will be able to tell you about a Neurologist who they know specialises in IIH. I had a look into it for you, and I found that there has been a paper written on IIH in Northern Ireland in 2001, by Doctors from the Royal Victoria Hospital, Grosvenor Road, Belfast. I don't know if this is the hospital you are attending, but that was the only Neurological Centre I could find for Northern Ireland. Here is the link to the article Idiopathic intracranial hypertension; incidence, presenting features and outcome in Northern Ireland (1991-1995) I don't know if those Doctors are still there but it might be worth looking into.

I hope this helps and I'll keep searching for you, and hopefully other members might have some suggestions too.

Heidi hug
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claireebear
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PostSubject: Re: Claire diagnosed 2012   Sat May 12, 2012 6:10 pm

thanks for that it was that hospital i was at as far as im aware its the only neurology dept in the whole of northern ireland so there always very very busy
im not sure any more if its just me but i dont think im getting much better the headaches are just as bad my eye sight is as bad sometimes worse is it just because im focusing on it and worrying about it i cant even have a good cry about it as it causes that much pain in my head think it might pop but i have to say the LPs are so painful for me i am really torn with what to do as the doctors dont seem to know what else to do but a LP (i have had i disc removed in my lower back in nov 2011 so LP are really bad on me) well we will see how my next visit goes in 2 weeks mind you its only at the eye clinic (still waiting to speak to my surgeon after all this time ive found out the man that is wrote on my notes is not the man that done the surgery but the its fine it happens all the time as one shift finishes you get passed to the next surgeon but it just wasnt wrote on my notes so the secretary told me) honestly you could not make this stuff up its a pity they didnt make the shunts with some sort of device for reading the pressure sort of like the chips you get for your dog that tells you there temp lol
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claireebear
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PostSubject: Re: Claire diagnosed 2012   Thu May 17, 2012 3:32 am

im just on to nite to have another bit of a moan sorry im still torn with what to do am i still just recovering from thr surgery? ive been reading up on the condition and have scared myself because im just gonna be swapping 1 set of pain for another ie more surgery fixing the shunt or the even scaryer sounding eye thing they had mentioned it in the hospital but it sounds like well i dont even have words for how scarey it sounds and the LP have to scare me the most which is probably why im still sat here and not back up in the hospital i am on 8 tramadol 8 paratecomol pregabalin and topamax all for the pain plus the patches i get for my back and thats everyday without fail i went in to the town yesterday with my dad i was going in to get my glasses widend so i could put my new ones on was only in for about two mins when i had to sit down i went all hot dizzy felt sick really weak faint and a really bad headache is the rest of my life going to be like this will i ever get back to "normal"
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PostSubject: Re: Claire diagnosed 2012   Thu May 17, 2012 4:25 am

Clairebear, is there any chance that what you are feeling is the ffects of [u]LOW pressure??
Do the headaches feel better when you lay flat? Does drinking caffenated beverages help?
Just a thought.
I do wish you a quick resolve and feel better soon.
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BananasMom
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PostSubject: Re: Claire diagnosed 2012   Thu May 17, 2012 4:29 pm

Hi Claire! I'm so sorry you're still feeling so bad. *hugs* Try not to get discouraged though ... lots of people with shunts do get back to a "normal" way of life. It just sounds like they still need to get everything straight with your treatment. Have you told the doctor that your vision is not improving??

Wylee has a good thought about low pressure. Is your pain and dizziness improved when you are laying flat? Could it be you are trying to do too much post-surgery and not giving yourself enough time and rest to recover (I don't remember when you said the surgery was done)?

Please stay proactive in working to get the treatment and help you need from the hospital -- I know it is hard when you are hurting, but they really need to be working with you right now. *big hugs* Stay strong!
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medmisfit
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PostSubject: Re: Claire diagnosed 2012   Thu May 17, 2012 7:55 pm

I'm sorry Claire..what a scary mess this has been for you! I agree..low pressure & rest may be possibilities, but it also sounds like you're taking a lot of meds. I wonder how long you've been taking everything or if there have been any recent adjustments..could be side effects or simply need an adjustment. Honestly, it takes your body awhile to adjust & recuperate, so it may just be a matter of waiting & building stamina. I'd keep a symptom log to take to your upcoming appointment & consider returning to hospital if things get worse. Hang in there!
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claireebear
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PostSubject: Re: Claire diagnosed 2012   Thu May 31, 2012 3:39 am

thanks everyone for your help i still cant lay down flat as its to uncomfortable so i take it that low pressures not a problem i was back at the eye clinic i have to go back in to hospital but as theres no beds avaible they sent me home after hanging about the hospital for a while and she said that as soon as there was a bed someone one will ring me as they wanted to check the shunt and flush it and/or do a tap? lovely can't wait more time in hospital when i was up at the eye clinic they looked in my eyes and yes they where slightly worse than when i left hospital but oh well on a brighter note i have decieded that i am no longer going to worry about it what will be will be if i have to go in to hospital again so be it i will soon be back out with my 2 children oh i also wrote a thank you email to the lady in spec savers who did my eye test and they have asked if they can use the story to put to there pr people so hopefully there might be a little bit of good to come out of this whole thing to highlight how important getting your eyes tested is to the public
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PostSubject: Re: Claire diagnosed 2012   Thu May 31, 2012 5:47 am

Hi again, Claire! Smile Thanks for the update. It sounds like you are staying after the problem and working towards getting things straight, and also that you have a really great attitude about it all ... which I believe definitely helps in a lot of ways! Stay strong, sweetie, and keep us posted. *hugs*
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Heidi
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PostSubject: Re: Claire diagnosed 2012   Thu May 31, 2012 4:32 pm

Claire your post was a joy to read! hug You have come a long way and your positive attitude and determination shines. I think it's brilliant that Specsavers want to use your story, and it will also highlight how important vision is as well as IIH.

Keep strong and keep smiling!
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VDubs
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PostSubject: Re: Claire diagnosed 2012   Thu May 31, 2012 4:46 pm

Hello Claireebear

so sorry i have not seen this sooner. I had a vp shunt fitted on the 8th of may and i made loads of videos and most are up on youtube under VDubsTDi

I dont know much but I have talked from the heart about how having IIH has changed me for good and bad

big hugs xxx


Dyslexic & Special

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PostSubject: Re: Claire diagnosed 2012   Thu May 31, 2012 7:03 pm

Thanks for the update..I'm glad they're doing something. I hope they're able to find answers to your questions and get you some much needed relief!!!

I also think sending a thank you note was a brilliant idea. We talk a lot about the bad things that happen to us, but don't often remember to recognize those people that have helped us along the way. I actually just sent a note to a diagnostician I saw 20yrs ago because he's the one that told me to keep seeing doctors until someone listens because no one knows my body better than I do. It took me 3yrs, but I finally found someone to listen and I'm practically pain free again..we are our own best advocates.

Take care, and good luck w/ everything!!!!
Julie
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