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 Dave - diagnosed December 2012

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

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   Fri Nov 29, 2013 2:55 am

Hello Dave, and a very warm Welcome 

Thank you so very much for coming on and sharing your story.  So many doctors are convinced that IIH only affects overweight women of child bearing age.  It takes people like you, who do not fit the "norm" coming forward to help us to help educate them that this illness can indeed happen to anyone.  You are very lucky to have such an astute "fill-in" doctor who gave you the time and attention that you needed to figure out just what was happening and what to do.
It will be interesting to see which shunt you have.  Please let us know after you find out.  I guess at this point, just to ask that it continue to work well with no need for revisions would be great!

I hope that you will keep in touch, especially to help out with the men who do drop by.  A success story is always welcomed and great to share.  And, you are right about Heidi, she is a real gem.
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PostSubject: Re: Dave - diagnosed December 2012   Fri Nov 29, 2013 5:38 pm

Dave I am so pleased you've joined us. It has been an absolute pleasure to support and help you, and to also be your friend. You have been incredibly resilient and positive despite what you have gone through, and I do hope that now you have your shunt, your life will be your own once again. hug
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PostSubject: Re: Dave - diagnosed December 2012   Sat Nov 30, 2013 2:43 pm

Dave welcome in the group, sorry to hear about all the painful days you had.... I am also fit male and new to this condition.
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PostSubject: Re: Dave - diagnosed December 2012   Sun Dec 01, 2013 1:12 am

HI Yash, nice to meet you. I have read your previous post's about IIH etc, again I am very sorry to hear about this and how it has affected you. If you ever want to chat about it and how its affected me as we are both men suffering from this, please contact me via the web site. Take care and look after yourself. Dave
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PostSubject: Re: Dave - diagnosed December 2012   Sun Dec 01, 2013 8:24 am

Thanks Dave!

Sure, Its the best platform and helped me a lot to deal with this unknown/invisible disease.
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PostSubject: Re: Dave - diagnosed December 2012   Mon Dec 02, 2013 9:00 pm

Hi Dave, welcome to the group!! I'm so glad the shunt has been successful and you're finally getting some relief. I'm sure your journey will help many others, so thanks for sharing.

Happy healing!
Julie
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PostSubject: Re: Dave - diagnosed December 2012   Mon Dec 02, 2013 11:50 pm

woohoo
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PostSubject: Re: Dave - diagnosed December 2012   Thu Dec 12, 2013 12:06 am

Well, I've had a horrible day. I felt rough last Friday, some of the usual symptoms were back, sore neck, headaches, blurred eye etc, and so I rang the specialist today at 11am. At noon I arrived at the hospital and finally at 2130hrs I was discharged having learned my shunt has failed... Gutted is not the word.  They did CT, Xray and finally inserted a needle into my shunt and it was empty.  So off  I went for my 11th lumber puncture. Now, having previously had 10, I had a good idea of what to expect, until the first doctor inserted his long needle into my spine without any local......   I almost wet the bed... He'd forgotten to give me the vital pain relief before the LP...   After he failed to draw any fluid, and I was wincing in pain, a senior registrar who operates on spines came along and did the LP, WITH the vital ingredient local anesthetic...  As if LP are not bad enough, I have some doctor do mine without this injection!!!!!!

Anyway, my pressure was 30, not my highest but considering I only had a shunt fitted 4th November 2013.. To be honest, my headaches and usual symptoms were not as bad as they previously been.  So, waiting a phone call now to confirm when I will have the shunt done all over again!!!!

God I hate IIH, it's always in the way!!!   Give me strength....
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PostSubject: Re: Dave - diagnosed December 2012   Thu Dec 12, 2013 12:37 am

Oh, man!  How rotten!!  So glad you were able to figure it out though. Just hope that you are able to get that revision done ASAP.  Maybe this will be the last time??
Still keeping  fingers crossed
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PostSubject: Re: Dave - diagnosed December 2012   Thu Dec 12, 2013 3:00 pm

Dave, I'm so sorry.. I've also had LP without anything and I wouldn't wish it on anyone! In these times I think you just have to hold onto the idea that you know it can get better. It's just a mechanical glitch and can be fixed. Frustrating and debilitating, but hopefully short lived.

Hang in there!!!
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PostSubject: Re: Dave - diagnosed December 2012   Thu Dec 12, 2013 6:37 pm

thanks everyone, feeling a little better today, I was well and truly - lets says frustrated yesterday.. I was hoping for a telephone call today to advise me if I should start taking me medication again? As usual, I've heard nothing.. I have my meds, should I take them? or wait..
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PostSubject: Re: Dave - diagnosed December 2012   Tue Dec 17, 2013 6:07 pm

Hi Everyone, possibly going into hospital next 24 / 48hrs, waiting for the bed manager to ring me. They are going to revise my shunt!! Yes, hopefully I will get the call and have this fixed.. Can't wait, seems strange...
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PostSubject: Re: Dave - diagnosed December 2012   Wed Dec 18, 2013 4:08 am

Yay!!
Hope you get a bed and the process started real soon!
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PostSubject: Re: Dave - diagnosed December 2012   Wed Dec 18, 2013 5:16 pm

That's good to hear..hopefully you'll have some relief soon!

Good luck!
Julie
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PostSubject: Re: Dave - diagnosed December 2012   Fri Dec 20, 2013 4:54 pm

I had a text from Dave to say he's in hospital awaiting his surgery. I'm so pleased they are doing it this side of Christmas so at least he and his wife will be able to enjoy it, and go into the New Year with a renewed sense of relief and hope.
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PostSubject: Re: Dave - diagnosed December 2012   Sat Dec 21, 2013 5:27 am

Thanks for the update, Heidi.  That's good to hear.
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PostSubject: Re: Dave - diagnosed December 2012   Sat Dec 28, 2013 1:06 am

Hello everyone, well I'm back home and here's what happened. At first I was going to have a 2nd shunt fitted, then two surgeons looked at my results and both agreed the shunt was working. So, they decided they would fit me to an ICP monitor for 48hrs. During this time my pressure was normal and below 15 most of the time. I had the odd rise of 28 to 29 but it soon settled. So, they agreed I was safe to go home. However, I am a little confused. If the shunt IS working, why did I have to have a lumber puncture the week before? They did test the previous week and said the shunt had failed? They said sometimes It can fail?? I think the ICP was to early for me as they had recently just drained me. I think I will be back in hospital in 3/4 weeks once my pressure starts to rise again. Then they will do the ICP again and confirm the shunt is not working and then shunt number 2 will arrive. :S Anyway, just take everyday as it comes.

Hope you all had a merry xmas etc, speak soon Dave,
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PostSubject: Re: Dave - diagnosed December 2012   Mon Dec 30, 2013 3:39 pm

Dave, I'm so sorry you haven't had any resolution! Hopefully the spinal tap has at least provided you with some relief, so you can enjoy a little of the holiday..hang in there!!!
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PostSubject: Re: Dave - diagnosed December 2012   Wed Jan 15, 2014 12:19 am

Hello everyone - a quick update. I have been in hospital for the last 8 days - it's a very long story but I will try to summaries this as best I can. I went to A & E last Monday, they were fantastic, very quick, can't complain. Brilliant - However, when I went onto the EAU ward (temporary ward) things changed. Between my last shunt and discharge - there has been a disagreement between the neurologist and the neurosurgeons, in a nutshell I was lost property. As a result, I had to wait some 4 days to have a LP. During this time I was on morphine and paracetamol every 4 /5 hrs to help with pain relief.
Day 4, LP time, it took the doctors 12 attempts to conduct the LP to which they failed. I then had to wait another 24hrs until somebody from the neurologist team was available ( i was going into theater, but again this changed). Anyway, after a very sore back, my pressure was 32 again after only 3 weeks. Anyway, i was eventually moved onto the neuro ward late Friday evening, whilst I waited for Monday to see the doctors. To keep it even short, I was discharged today, returning 27th January 2014 to have a shunt re-done as they have now confirmed it has failed on the right horn of the ventricles. Not the best situation, but at least I have some light at the end of the tunnel.. I forgot to mention, when I was in EAU, I had to contact PALS (patient, advice, liaison service) as they kept trying to discharge me. PALS was a great help and eventually enabled me to see the people I required. As a result, I now have a date for my next surgery. It's been a long hard painful week, but I got through it with the help of my family and friends, not to mention the help and support from Heidi. It was Heidi who suggested PALS as I was totally unaware of this. Patient rights are very important and perhaps at times we allow ourselves to be mistreated by not knowing all the information, help and support available. A big, big, big thank you to Heidi, for all her information, support and friendship. This group is amazing and I'm so glad I found you. It enabled me to find the information I required very quickly. Keep you all posted, but thanks again. (there was also an issue on EAU in which I woke up covered in blood and pain relief not provided, needless to say, the 'bank' nurse will no longer be working on that ward.
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PostSubject: Re: Dave - diagnosed December 2012   Wed Jan 15, 2014 9:40 am

Crikey Dave you have been through it.  Hang on in there.  (And yes, Heidi is wonderful!)
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PostSubject: Re: Dave - diagnosed December 2012   Sat Jan 18, 2014 4:30 pm

My goodness, Dave.  You sure have been through the wringer this go-round.  I am so glad that Heidi, and PALS have been able to help.  Your optimism is very encouraging.  
Keeping you in my prayers for a speedy and complete recovery.  fingers crossed
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PostSubject: Re: Dave - diagnosed December 2012   Wed Jan 22, 2014 9:49 pm

Agreed! You've definitely been through it and deserve a little rest. I hope you're able to relax a little and recover for your next adventure. Good luck!
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PostSubject: Re: Dave - diagnosed December 2012   Sun Jan 26, 2014 6:01 pm

Well, the headaches are back again, only a matter of days before I ring the hossie and book my place. Hopefully, this time they fix me.
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PostSubject: Re: Dave - diagnosed December 2012   Mon Jan 27, 2014 5:19 am

Oh boy, here you go again.  I sure hope it doesn't take as long this time, and that they actually do something beneficial.'
Let us know how it goes.
 get well 2
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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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