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Blank 30 Mar 2010 10:05am #25
offline Linda B

Member since 10 Mar 2008

Member from Hornby

Posts: 7

Good! Give the buggers a hard time!
My work email is: linda.burrows@trimble.co.nz
be faster than logging in to the website all the timesmile

48917-Me 30 May 2010 2:33pm #26
offline teepee1

Member since 19 Apr 2010

Member from Mission Bay

Posts: 2

My wife suffered a subarachnoid haemorrhage at the beginning of November 2009. She is 71 years of age. She was taken to Auckland City Hospital and progressed through CCU, HDU etc. She was finally discharged from Elder Care when keeping her there could no longer be justified, two and a half months after admission. She has since been in a rest home and undergoing physiotherapy. Recently, after good progress, she started to regress and her GP at the home referred her back to the hospital. She has been diagnosed with hydrocephalus and is presently back in HDU. We await the neurological assessment, but it looks as though she may well have a shunt inserted. I cannot praise St. John and the medical staff highly enough. Administration is another story.

48917-Me 24 Sep 2010 9:36pm #27
offline teepee1

Member since 19 Apr 2010

Member from Mission Bay

Posts: 2

Further to my last post, Margaret had a shunt inserted and hasn't looked back. It was as if a switch had been thrown. She was miraculously better the next day and a few days later she was so well that they released her from the hospital and I was able to take her back to the rest home on 21st June. On 28th August we had her back to OUR home. Still some caution in crowd situations but still herself and improving all the time.

Blank 25 Sep 2010 8:31am #28
offline I4cats

Member since 24 Mar 2010

Member from New Plymouth

Posts: 7

I am glad your wife is better now. What kind of shunt did she get put in, was it a magnetic type?

I always recovered like that when I had a shunt replacement. Better the next day, home in a few days and back to work within the month. Since I had the last replacement I have had nothing but problems and am still suffering. No Neuro Surgeon or Neurologist seems to be able to give any light to why I am having headaches etc still, I think it is because they just don't know the answer but don't wish to admit this.

Blank 17 Oct 2010 10:10pm #29
offline blackbridge

Member since 17 Oct 2010

Member from Pakaraka

Posts: 1

Dear teepee1 It was so interesting to read your comments about your wife and her subarachnoid heamorrhage and subsequent shunt. My mother (74) had two SA's in February this year which has turned my father and our family's life upside down. After 1 month in Auckland Hospital Neurosurgical HDU and 2 months in rehabilation at Whangarei Hospital she was discharged to their home in Kerikeri, Northland. Life has been an absolute struggle for her and us as we learn to cope with her huge mobility and brain function deficits. She has been spending 2 weeks out of every 8 in respite care at the local resthome to give my father some well earned recuperation. Things were progressing OK, but now the last 8 weeks Mum has slowly deteriorated and after constant nagging from me to the local health professionals, a CT scan was organised and hydracephalus has been diagnosed. She is booked for surgery to insert a VP Shunt this week 20 October back in Auckland Hospital. I worry that the long delay with pressure building in her brain will result in further permanent damage. How long was it for your wife before diagnosis/shunt insertion ? Good luck. I hope things still continue to improve for you and your wife. I am told we must never give up hope on the brains ability to repair and recompensate !!?

Blank 22 Oct 2010 5:21pm #30
offline mich018

Member since 22 Oct 2010

Member from Wellington Airport

Posts: 1

Hi my name is Michelle. I am a Deaf 24 year old. I was born with a meningocele sac at the back of my skull. I had a lump of skin and nerve endings hanging out of my skull.. Doctors, well I don't know what they did but I think they cut some of the nerve endings off and that has made me deaf. I thought why couldn't they shove all the bits back into my skull. I don't know why they didn't do that.

Coming along 11 years old. Must of been November 1997. I became really sick, the next few weeks I couldn't eat, I couldn't dress myself, i was like a zombie. I was getting massive headaches and sometimes I would cry because it really hurt. My parents had enough of going to the Doctor's. So they whisked me away to Wellington Emergency Department. The doctors took a cat scan and it showed that I had massive fluids crushing my brain, so we had to have an Emergency Operation. So I came out with Hydrocephalus. Since getting my shunt put in, I still get headaches and the occasional migraine. 12 years later I'm still getting the headaches and migraines and I really hate my shunt. There have been times I wished I had died because I have been dealing with the headaches and migraines for 12 years. I think my dad is to blame because he used to whack me across the head alot at the dinner table and I got whacked alot. I bet that caused it. Because over time it would have slowly started to damage my brain, the fluid stuff. I mean I never got hit on the head by a ball or anything it was from dad whacking me when i was a kid he whacked my head so hard I would have a migraine instantly. I bet he did it. I still talk to him but we don't see eye to eye. I can't even say I love you dad. Because I don't. I also have borderline personality disorder, major depression and gender identity disorder.
I've been on all the pain killers from the GP, The Neurologist, been to 2 pain clinics.

Can any one help me here. Please there must be someone out there that can help me. I would be greatly appreciated. I don't want to kill myself because of my headaches and migraines there must be something that will help.....

Thanks.

Michelle

Blank 30 Oct 2010 9:19pm #31
offline GeniusJosh

Member since 30 Oct 2010

Member from Paraparaumu

Posts: 1

Hi, my name is Josh.

I wouldn't normally post, or even sign up these sites. But after reading your post Michelle - I felt the need to reply.

I hope what I say helps. And I feel for your situation and what you've been through and still going through.

I had a subarachnoid haemorrhage when I was 18, nearly 9 years ago... I developed hydrocephalus while in hospital and had a VP shunt put in. It blocked twice while still in hospital. Was in there for 6 weeks altogether. It has been ok since.

I too had headaches/migranes since it happened - I never really had a headache before that tho. My neurosurgeon basically said that 5% of brain injury victims will suffer with headaches for life and there nothing they can do, other than painkillers. After years of putting up with them, I didn't accept that.

I pretty much tried atleast 10 different medications to try help them. Nothing really worked for me - they may for others, everyone is different. Only thing that helped me was codeine. Late last year and early this year, I was eventually taking 120mg a day, every day... Was getting out of control, so went back to the Neurologist again, and he said a new medication had just come out so I was put on that... it finally started to help, after nearly 9 years! I've stopped taking them after getting fit and losing bit of weight and also getting my blood pressure under control, and now I very rarely ever have headaches at all.

So there is plenty of medications that they can try for you, and new ones coming out too. You just need to find the right one for you - I know you feel like a guiney pig.. but when you do find the one that helps you, it's so worth it.

So hang in there! And be persistant with the doctors, keep pushing them and complaining - everyone deserves to live pain free. If there's a will, there's a way!

Blank 21 Nov 2011 9:42pm #32
offline csim67699

Member since 21 Nov 2011

Member from Auckland City

Posts: 1

I am now 33weeks pregnant and my Dr says my baby has Hydrocephalus, i will find out for sure hopefully on Thurs at my next scans. Please if you know any info? Can you please help me and guide me through steps? This is new to me and is a very scary time. My email csim09@windowslive.com

Thank You

Missy


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