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 Liz Diagnosed 2003

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Liz81
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PostSubject: Liz Diagnosed 2003   Tue Apr 17, 2012 12:22 am

I was diagnosed with intracranial hypertension secondary to a drug I was prescribed to prevent anaphylactic shocks back in 2002 (In the side effects it was listed as a chance of less than one in 100000). I had been having autoimmune anaphylactic shocks for about 6 months and being rushed into hospital by ambulance on a regular basis so they decided to put me on an immuno-suppressant to try to get them under control as the combination of steroids and other drugs were not controlling them. After a couple of months on this new drug I was getting headaches that were getting worse and worse. My GP knew me very well at this stage due to the unusual nature of the anaphylaxis (and the GP is based on the university campus where I work, handy!) so he was very helpful and gave me some pain killers to try for a couple of days but said if it got worse or didn’t ease to come back. After a couple of days I went back and he sent me to A&E where they thought it may be meningitis and decided to do a lumbar puncture, they got a shock when the CSF started spurting out of the top and was off the scale for measuring the pressure as they weren't expecting a high pressure problem. A neurologist was called from another hospital and came over that evening and started a course of acetezolamide if I remember correctly.

From that time on the next 6 months consisted of lots of drug dose changes and regular LP's to reduce the intracranial pressure until it got to the stage where I was needing them on more than a monthly basis and they decided a surgical intervention was necessary. I began with an LP shunt and as you may start to notice if it can go wrong with me it does tend to go wrong.... so I probably had about 10 lp shunt revisions due to blockages, kinking and one even falling out. That one still floats around in my pelvic cavity as a spare part as they decided that there is no need to do another operation to remove it unless it causes problems which as yet it hasn’t done! The LP shunts consisted of straight forward LP shunts and ones with programmable valves.

After all these problems the next step was to move on to the VP shunt and so that was then put in but I was still getting headaches and after a few weeks in hospital I asked what the lump on my head was and they then told me that was a reservoir to drain fluid and I shouldn't press it as it will drain CSF, at this point I suggested they should probably have mentioned this before my operation as it was a squidgy button and a bit like bubble wrap so I had been pressing it regularly as had each and every one of my visitors.... oops, you would if you found a button in your head wouldn’t you?! That'll be why I had low pressure headaches, I had been draining all the fluid off the brain, so as soon as I stopped pressing the big button on my head and had 24hours to refill I was on the mend.... for a time! I soon had another shunt blockage and went in for more surgery. At this point I was starting to find the battle quite tough so spoke to my GP about getting a 2nd opinion and finding out if there are other options out there. He suggested another surgeon and lined up a visit fairly promptly. When I went to see this next surgeon and explained about the button and that I had just had more surgery and that my scar was still leaking, he then stopped me, he asked what I meant and if it was blood, no I said, thinking this was good, at which point he said that it meant that it was CSF leaking out which meant that infection could get in and that he didn’t normally take on complicated cases that were mid being dealt with. i.e. a surgeon needs to sort out their own mess! But on this occasion he would and he needed to operate that night. I wasn't expecting that!

Since then he has tried all sorts of things. He found I had "slit ventricles" so they keep shutting on the shunt and preventing it from draining so he did a bilateral sub temporal decompression operation where he removed discs of skull from both sides of my head to release pressure. This caused the pressure to go too low again so he used a novel technique of headbanding where he basically used a bandage of differing tortness to adapt the pressure through the holes in the skull. After a year of the headbanding he refilled one of the holes with acrylic cement as I wanted to not have to wear a hat for the rest of my life and I had had 6 months where it was all going reasonably well. I was coping with the headaches and had been in work. Until 3 weeks ago when I collapsed in work, I was taken to hospital and had dreadful headaches, an LP showed an opening pressure of 28 so they decided the shunt must be blocked again so more surgery. It is SO frustrating as I was starting to think the time in between operations was getting longer as it had been a whole year in between the previous 2 and now it's only been 6 months. Because I have had over 20 operations now I feel people just see it like its routine and like anyone else having a trip to the dentist when for me I still have to go through the brain surgery when as stupid as it may sound one of the hardest parts I find is the head shaving! Everyone says just to ask if there’s anything they can do but I’ve always been so independent with it all and now that it’s getting harder it’s difficult to start to admit defeat….. Everyone around me is getting on with their lives, getting married, having kids and I am just battling to get well after each operation to get back to work so I don't let people down and to try and lead a 'normal' life but this is becoming increasingly more difficult….. And this is how I have found myself logging on to here, it’s only taken me 9years to try and find some help but there is some really interesting stuff on here and I’m certainly going to keep reading through to see if there’s anything else that I can try, preferably that doesn’t involve having anymore holes drilled in my head!!

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medmisfit
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PostSubject: Re: Liz Diagnosed 2003   Tue Apr 17, 2012 2:07 am

Hi Liz, & welcome to the group!!! I hardly know what to say..we have all had our struggles, but you have really been through it! I'm glad you found us & think you'll find a lot of support here.

There is a lot of information available throughout the site. You may also find more information regarding IIH & treatment at www.ihrfoundation.org. I hope this surgery is successful & you're able to find more consistent relief soon!

Take care,
Julie
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Wylee
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PostSubject: Re: Liz Diagnosed 2003   Tue Apr 17, 2012 4:15 am

Hello Liz and a very warm Welcome

My goodness. You sure have been put through the wringer!! I too hope they come up with something better to try to help you. Ten years is way too long to have to deal with this crap.

Feel free to come onboard anytime, to rant and rave or just chat. We are here to help each other any way that we can.

Linda
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Laura
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PostSubject: Re: Liz Diagnosed 2003   Tue Apr 17, 2012 9:59 am

A big welcome to you Liz!

You have certainly been through a lot! I hope they come up with something better to make you more comfortable, I can't believe you've had to put up with all this in 10 years!

Again Welcome to the group and know we are here whenever you need us!

Laura


Nothing in life is to be feared, it is only to be understood. Now is the time to understand more, so that we may fear less - Marie Curie
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Liz81
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PostSubject: Re: Liz Diagnosed 2003   Tue Apr 17, 2012 10:30 pm

Thank you so much for your kind words ladies, it's nice to hear your support. I have today shown my mum this site and think it's been really useful for both of us. Have also mentioned it to some friends who want to have a read so really have found it beneficial. Thanks so much to those who set it up thank you
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sinister416




PostSubject: Re: Liz Diagnosed 2003   Wed Apr 18, 2012 1:26 pm

Hi Liz and Welcome3 to the group,

Sorry you have been through so much in the last 10 years hug I do hope they find a solution for you soon so that you are able to rest and resume a routine life.

I'm so glad that you have found support with us and if your family or friends need support too we have a section for them both xxx

Keep us up to date on how surgery goes to fix your broken shunt and fingers crossed it all goes well and works xxx :flower:
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BananasMom
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PostSubject: Re: Liz Diagnosed 2003   Wed Apr 18, 2012 8:31 pm

Hi Liz! Very Happy Welcome to the group! I'm so glad you've found us and I know you will find lots of support and information here. This site has been wonderful for me.

It sounds like you've already been through quite a journey with IIH and I'm sure YOU will be a great resource for us, too. Your experience can definitely benefit those who are new to living with this condition. Stay strong, and I look forward to getting to know you! Smile
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