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 Zoe : Diagnosed October / November 2012. Any advice greatly received

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cocker92
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PostSubject: Zoe : Diagnosed October / November 2012. Any advice greatly received   Wed Nov 28, 2012 4:08 pm

Hi, I'm Zoe and was diagnosed with IIH in what I can only describe as a whirlwind of investigations resulting in surgery over a period of 3 weeks. I attended opticians in the evening as had been experiencing headaches for a few months,but noticed I had intermittent blurring of vision in my eyes, but mainly my right eye.I also experienced episodes where I would bend down to pick something up, and everything just went black. I thought I may have stood up quickly, as vision came back after about 30 seconds or so. I put it all down to being a busy working mum who just needed glasses. The optician asked many questions and eventually informed me I needed to see a Consultant Opthamologist in hospital over 1 hour away as he'd noted swelling to both of my optic nerves and bleeding behind both eyes too.
I saw the Consultant the following day, who after many tests, field tests confirmed the Opticians findings too, alongwith significant loss of vision around my natural blind spot in right eye, also loss in the left.
I was admitted immediately into hospital as they needed to rule out anything serious causing the pressure behind my eyes, so it was a very difficullt time waiting for the results of the scans. They carried out a CT scan, MRI scan and an MRI scan where they check all the vessels in the brain for blockage, bledding etc. A lumbar puncture carried out showing the opening pressure of 38. The consultant Neurologist who divided his time between the hospital I was in and his main Neuro hospital 3 hours away diagnosed me as having IIH. He was perplexed to the cause, as I didn't come under any of the usual perameters for IIH, being slim and fit & healthy
up to time of admission. Started Diamox 500mg initially and amytriptylline 75mg to try and reduce the pressure. I spent 2 weeks in the general hospital having more lumbar puntures, and medication increase to Diamox of 1000mg a day. Headaches had eased so they discharged me home much to the relief of my family and children. Very Happy
3 days later I collapsed at home with severe headaches, semi conscious and rushed back into main hospital. They performed another lumbar puncture which went off the scale, next thing I know I am being rushed into my nearest Neuro hospital 3 hours away, where I was met by Neuro Surgeon,Registrar and nursing staff. They were brilliant explaining what IIH is, explained that I need to have a shunt put in to reduce the pressure. They explained that they would be putting in Ventricular Peritoneal shunt which I now know as a vp shunt and that they intend to do the surgery first thing in the morning. They explained at great length all for fors and againsts, listened to my concerns, answered all questions.
The following morning I went to theatre had the VP shunt sited, upon return to the ward the Neuro Surgeon was already there talking to my family ( not that I remember as in the world of sleepiness ;)
The surgical team shaved a relatively small area of my hair off, whilst putting the rest in theatre made scruchie to keep it out of the way. They clearly understood about womens self imaage as they did it in such a way that when I wear my haIr down, it covers the surgical wound
I was discharged home 2 days later to recover. It was brilliant not having headaches any more.
The only down side was I had to be readmitted into local hospital 10 days later due to severe abdominal pains around the shunt site, mainly when I tried to stand up. Labour seemed to be a breeze compared the pains I experienced near the shunt. They did X-Rays, Ultra Sound Scans, Bloods, all came back clear. They could only put the pains down to my body healing aroung the shunt and when trying to stand, the skin that had healed around the shunt was tearing as such to allow the shunt to move with me. Mind you the Drs said they had never seen anybody before with a VP shunt, didnt really fill me with confidence, especially when they asked me why am I on Diamox !!
I see the Neurologist 11 December for follow, and waiting for Neuro surgical outpatient appointment to come through, along with referral to hydrocephalus nurse specialist.
I have been home from hospital 2 days now, still trying to understand everything that has happened over the last 4 weeks. It's been an emotional roller coaster to say the least. I think it hit home yesterday as very tearful as recovery seems to be slow.
If anybody has any advice about after care, recovery from all the above, things to look out for I would be soooo greatful, as have no literature about it.
Is it normal to get abdominal pains afetr a shunt? mainly spasms...
Thank you in advance for anyhelp or advice given
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BananasMom
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PostSubject: Re: Zoe : Diagnosed October / November 2012. Any advice greatly received   Wed Nov 28, 2012 4:32 pm

Hi Zoe!! Welcome to the group! Very Happy I'm so glad you found us. It sounds like it has been a very overwhelming few weeks for you! *hugs*

I don't have a shunt myself, so I'm sorry I don't have any experience to share ... but there are lots of folks here who do, and I'm sure they will be able to offer some advise and reassurance. I hope you begin to feel lots better soon!
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medmisfit
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PostSubject: Re: Zoe : Diagnosed October / November 2012. Any advice greatly received   Thu Nov 29, 2012 12:45 am

Wow Zoe, you have been on quite a journey! I have a lumbar shunt, so I'm sure recovery is different. I know my last surgeon told me to give it a good six months for all of my abdominal stuff to heal. I've also had stomach pains and spasms this time, but no one seems to be concerned..they definitely get my attention though. Hopefully it's just part of the healing process and it will improve with time. Make sure you rest, drink plenty of fluids, and follow the weight restrictions. I know it's difficult with young children, but you have to take care of yourself first. Try keeping a symptom log and see if you're able to find any patterns or triggers..there are examples in the Useful Guides and Print Outs section,but I try to include food, meds, and sleep when I'm having issues. I hope you find continued relief!

Take care,
Julie
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cocker92
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PostSubject: Thank you   Mon Dec 03, 2012 12:09 pm

Thank you for your kind replies. Really helpful. Its just so nice to know there are others who understand xxx
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Heidi
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PostSubject: Re: Zoe : Diagnosed October / November 2012. Any advice greatly received   Mon Dec 03, 2012 9:08 pm

Hi Zoe and a very warm welcome to the group. hug I can't believe how much you've been through in such a short space of time. I have a vp shunt, and have been tender in the abdomen after having them revised, but have to admit nothing like what you are experiencing. I'm sure your Neurosurgeon will be able to give you a better explanation when you see him about what it could be. At least you know the scans have turned up anything to worry about which I'm sure is a relief.
We have lots of information and booklets which you will find helpful, and our members are all wonderfully supportive and happy to answer questions. We're all here to support you and will be happy to answer any question you have.
Heidi
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Wylee
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PostSubject: Re: Zoe : Diagnosed October / November 2012. Any advice greatly received   Wed Dec 05, 2012 4:36 am

Hi Zoe and

Having had everything happen so quickly may be a blessing in disguise. You have been able to save your eyesight and are on the road to recovery already. I hope that your pains will go away quickly too.
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sherry52
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PostSubject: Re: Zoe : Diagnosed October / November 2012. Any advice greatly received   Tue Nov 12, 2013 3:37 am

Hi Heidi,

How do I find the information books on this site?  My neuro mentinoned the possibility of a shunt in my future and I'd like to research the process, different types, etc.  Thanks!  Sherry
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Wylee
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PostSubject: Re: Zoe : Diagnosed October / November 2012. Any advice greatly received   Tue Nov 12, 2013 5:23 am

You can find quite a bit of info here: Surgeries

There is an entire section devoted to the different types of surgery options.
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medmisfit
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PostSubject: Re: Zoe : Diagnosed October / November 2012. Any advice greatly received   Thu Nov 14, 2013 5:19 pm

IIH Surgery or Useful Guides and Print Outs sections here. You can also check out info from IHRF at ihrfoundation.org.

Good luck!
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