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 Dave - diagnosed December 2012

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PostSubject: Dave - diagnosed December 2012   Thu Nov 28, 2013 9:02 pm

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Hi, I'm Dave. I'm 37yrs old, I live near Manchester. I was diagnosed with IIH in December 2012. Around October (a few months before) I was suffering headaches, morning, noon and night. I also noticed that my balance was affected, my right eye was going very blur (like underwater) I was always tired, confused and I started to forget things. At this time I was also driving,  I almost crashed into a lorry as I was unable to judge gaps and distances in the road etc.  So, I went to the doctor (3 times) and he told me it was my signosis and that I should inhale menthol crystals to clear the nasal etc. (how wrong was he) anyway, I knew something was wrong, so I eventually went to see opticians to see what was going on with my eyes.

The opticians was pretty scary, I was sent straight to the hospital for checks, shadow on the right eye... Anyway to cut a long story very short. We had MR and CT scans (no tumors, phew) and I was then sent home only to return the following day for my first of many lumber punctures. (pressure was 32). I felt great for around 3 weeks until same symptoms had occurred. At this point I was referred to the neurological team at Salford Royal.  Between December 2012 and November 2013, I had 10 LP's in total. During this period, I was on 1500mg of diamox, 100mg of troprimite, 100mg of phenanol - beta block drug (excuse my spellings). It took the hospital almost 12 months to confirm the medication was not working.. My last LP recorded a pressure of 36, this was between my previous LP which was only 3 weeks previous. 

During this time I wasn't able to work much. I had returned twice to work, only managing a period of 5 weeks. One minute I had high pressure headaches, then the horrible low pressure headaches from all the LP's (almost 1 a month). During this time, I lost quite a lot of weight. I was 108kg around this time, I now weigh 96kg.  I lost the weight, tried the medication, nothing was working for me. I was in constant pain. 

In September 2013, I felt really crappy, so I made a phone call to see the specialist. He was on leave, so I was sent to see another doctor in Wigan. She was amazing, Dr Hilary TYNE. She examined me and admitted me to Salford Royal hosptial. I was on the ward for 5 days. I had been into neuro ward many times, but it was the first time some of the nurses actually looked concerned for me. They said they had never seen me looking so ill. I had daily eye tests, plenty of rest and it was decided it was Shunt time for me..

I had the shunt on the 4th November this year. I'll be honest, I was very scared about the whole situation. But now, It was the best thing. I remember waking up from surgery and thinking to myself "I've no headache" and my ears are fixed. (I had sore ears, they felt like I had water in them. When I spoke,  I could hear myself. It was like wearing a diving mask. Everything was amplified, even my breathing, but it was all fixed). 

I am still getting a little pain now and then in the stomach from where the shunt has been fitted, but I feel so much better. I'm no longer on any medication and my head has healed really well.  It's been a very hard 12 months, both physically and mentally for my and my family. I have two teen lads, who for the last 12 months have only seen dad in bed with his PJ's on..

Around, September 2013, I was surfing the net for answer into why I had terrible headaces (10 days after my last LP). I came across this site via twitter. I met Heidi, the founder of this support group. She has been amazing support and a good friend to me. Heidi provided me with some really useful tips about pain relief etc, but it was also reassuring to speak with someone who actually understands how WE suffer with IIH. Thank you Heidi.

So that's my story, sorry it was a bit long.. If i can help anyone, or they wish to ask me questions about anything IIH etc, please feel free.  PS - I have also volunteered into a SHUNT study, prior to surgery I had the chance of having the usual Shunt fitted, or two other types. They said I would not know until after the study was conducted, but I either have the usual shunt, a silver shunt or a shunt fitted with a infection anti-body..

Thanks to Heidi..


Dave
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PostSubject: Re: Dave - diagnosed December 2012   Sun Feb 09, 2014 11:23 pm

Hi all, well - i was back in hospital last week, obs and checks to the shunt. They seem to think the shunt maybe working only partially.. So, I have to wait again until my pressure goes up. then ICP monitor again to decide what the best course of action is. Either another shunt, fix the existing one, add a vale inside my head, lots of different options, but have to wait now. I usually only last 4/5 weeks, before I need an LP, I'm coming up-to 5 weeks this Wednesday, Still getting the odd pressure headaches, then they go.. Just waiting, it can;t be long now, can it?? Feels like I'm walking the green mile.
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PostSubject: Re: Dave - diagnosed December 2012   Mon Feb 10, 2014 10:02 pm

It's really ridiculous at this point. Is it wrong to say I hope your pressure increases soon? LOL. I just hope they're able to figure it out or make a decision, so you can get some relief.

Thoughts and prayers are with you!
Julie
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PostSubject: Re: Dave - diagnosed December 2012   Wed Feb 12, 2014 12:03 am

Dave, I am very confused.  You have shown, repeatedly, that your shunt has failed, or why would your ICP be so high??  What are the docs waiting for??  Is there anyone who can advocate for you?  Your docs have dragged this on for months already.  I would be out looking for new docs!!  Why are they leaving you in such a state?  I just don't understand.  :frustrated  censored  censored
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PostSubject: Re: Dave - diagnosed December 2012   Wed Mar 05, 2014 1:29 am

Hello, well  I got admitted on Thursday last week, managed 7 weeks since my last lp. Had my shunt fixed, was originally having a second shunt, but they choose to fix my original one. It has been moved, tested and they used 3D imagery to align it better. Anyway, hopefully going home tomorrow, I feel much better, my head is very swollen and sore, have some pictures but was unsure how to share them on this forum..
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PostSubject: Re: Dave - diagnosed December 2012   Wed Mar 05, 2014 1:05 pm

So glad to hear that they finally actually worked on you.  I hope their "fix" does the trick.  Take it nice and easy, and  get well 2
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PostSubject: Re: Dave - diagnosed December 2012   Thu Mar 06, 2014 4:24 pm

I'm glad they finally addressed the issue and were able to provide you with some relief..
happy healing!!!

Julie
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PostSubject: Re: Dave - diagnosed December 2012   Tue Sep 23, 2014 1:49 am

Hello all, long time no speak, sorry I've not been able to post much recently, had computer issues. Anyway, what been happening?? I had surgery (again) 6 weeks ago and had a programmable VP shunt fitted (3rd Revision), just about healed from it, they really opened me up this time. I have been pretty sore and bruised. The last couple of times they've operated, I've only had a small scar in the past, about 2/3 inch, this time it's  much bigger I had over 20 staples removed so the swelling was big. It was really sore and uncomfortable.

I have felt really good last few weeks, but the last few days I have noticed that I feel different again. I usually last 6/8 weeks before I have needed an LP or shunt tap. But over the last few days, I have noticed a tingling, itchy burning feeling sensation at the back of my head. I have also been getting mile headaches, but this itchy feeling sensation has been consistent now for 3 days or so. I don't have the OMG I want to smash my head into the wall headaches (yet) but in the past this has usually meant my pressure is changing. I have felt sick on occasions, hot and flustered and my right eye (which has mild papilledema) has seemed more blue than usual with mild neck pains.

I think I might need to make a call? maybe the shunt needs adjusting with the programmable tool?? But I've not experienced this yet. The previous setting was 60, it is now 100??? whatever that means. I'm still on 1500mg of Diamox per day with the shunt until my post op visit with the neurosurgeon. I'm just about getting back onto my feet and this is now starting to worry me.  

Do you think this is normal? Is the shunt still adjusting, is this part of the healing process again? I don't have bad headaches, but this burning feeling is annoying. When I do get headaches, they seem like sharp pains, sometimes behind my eyes, sometimes where the shunt is positioned. These pains are sudden and sharp and last for about 30 mins or so, or until I take some pain relief to help. But my tolerance levels are pretty high now.  I have also noticed when I wake up in the morning, again last few days I've had headaches which have lasted for about an hour or so.

Am I worrying about nothing? I don't want to make a call just yet, I will be back in hospital and that is the last place I want to be.  When they did the revision (6 weeks ago), they found a blockage in the tube and my right ventricle had collapsed again. My shunt feels empty when I press the valve, it's not aspirating again. But I've only been able to the valve recently as a result of the swelling. When I press the shunt valve, there is nothing there, no pressure or resistance, totally flat..

Has anybody else experienced this? Do my symptoms sound similar to high pressure or do I just need a kick up the arse to make the call??  I don't want bad news, I'm hoping to start working again soon.

Thanks.
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PostSubject: Re: Dave - diagnosed December 2012   Tue Sep 23, 2014 3:09 pm

Really hope that you keep improving and that this time you'll have a smooth run.
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PostSubject: Re: Dave - diagnosed December 2012   Tue Sep 23, 2014 5:31 pm

Hi Dave, sorry I don't shunt experience to share, just wanted to send some good thoughts your way, and hopes for smooth healing and much improvement this time around!
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PostSubject: Re: Dave - diagnosed December 2012   Wed Sep 24, 2014 4:36 pm

Hi Dave! I would make the call if you have any doubts. There is definitely a long healing and adjustment period, but you should call if out of the ordinary..you've been through this enough to know what to expect, right?

I have a LP shunt, so have no idea how the VP functions. I get a killer headache with tingling and burning in the back of my head if I lean back or lay flat. They keep saying it's not related to IIH or shunt, but I didn't have it before shunt placement.

Good luck, and keep us posted!!!
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PostSubject: Re: Dave - diagnosed December 2012   Sun Nov 09, 2014 2:24 pm

Hey Dave, how's it going?  Feeling any better?  I would hope you have healed from the surgery by now??  Please drop us a line when you can.  An update would be great.
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