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 Berenice - diagnosed 2009

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PostSubject: Berenice - diagnosed 2009   Mon Jul 05, 2010 9:02 pm

Hello

My name is Toad aka Berenice and I'm 37. I live in Wiltshire UK with my husband and 5 year old daughter. We have 2 cats and I am full time carer for my husband who has various arthritic illnesses combined with osteoporosis and fibromyalgia.

Lol if you haven't fallen asleep already this is my story

I had a routine opticians appt last October and the optician advised me he would be writing to my Gp and to make an appt as soon as possible. I found out at the Gp appt that the optician had discovered paps in both my eyes. I'd been having headaches and vision disturbances for about a year but didn't think to go to the doctors as I'd put it down to stress after a bad personal year. To cut a long story short I was admitted into hospital the next week and after various tests which ended with an Lp with an opening pressure of 50 I was diagnosed with IIH and was prescribed Diamox and advised to lose weight. I had a follow up a month later with another lp and the pressure was 47. Since then I've had a monthly lp and the pressure has never been lower than 37.
In the meantime my vision has slowly been getting worse and I have very enlarged blind spots so I was refered to the neurosurgeon who advised a shunt with the option of either a lp or vp but he prefered to do the vp.
So I had my vp shunt on the 3rd June this year with the staples removed 7 days later. I'm not due to see my consultant until the end of August but think I will be phoning his secretary soon to ask for an appt as 5 weeks on I feel worse than I ever did :(

Anyway thats it sorry for waffling on lol and I look forward to getting to know you all x
Toad
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PostSubject: Re: Berenice - diagnosed 2009   Mon Jul 05, 2010 10:05 pm

Hello Berenice and a big welcome to our group. your story is very similar to mine in how you got diagnosed, so I know how worrying it would have been at the time, especially as you think of logical reasons to yourself for why you feel so off.

When I had my LP shunt revised to VP one 5 years ago, I was like you in that I didn't feel any better, and in fact started to feel a lot worse. I know it takes your body a bit of time to acclimatise to having a shunt though. Even so you are very wise to ring your consultant, as it could be the setting might need adjusting or it could be a blockage.

I'm sure once your Neurosurgeon has checked it, they can help the headaches. If it gets any worse get your GP out to you, they can then contact your consultant or Neurosurgery ward and perhaps get you in sooner. You really need to see your Neurosurgeon, and try not to worry.

Have you noticed whether you've had a stiff painful neck at all?
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PostSubject: Re: Berenice - diagnosed 2009   Mon Jul 05, 2010 10:22 pm

Hi Heidi

Thanks for the welcome. I have been putting off phoning because it has only been 5 weeks and I wanted to give it a chance to settle down. This last week has been horrendous :( I pretty much have a headache all the time, lots of eye disturbances, have been feeling dizzy and sick and yes my neck is very stiff and the pain is not excruciating more like a dull ache. My stomach is quite painful as well. the scar has healed nicely on the outside but I'm having short sharp stabbing pains which move around alot and feel as if I'm wearing a tight belt around my lower ribs.
Lol reading this back i probably should have already made that call What could the stiff neck mean?

Thanks again for the welcome x
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PostSubject: Re: Berenice - diagnosed 2009   Mon Jul 05, 2010 10:41 pm

It definitely sounds like you have something going on with your shunt, it could be that it has come loose in you abdomen and that's why your tummy feels sore. I know when the end came loose in my abdomen, I had stabbing pains and thought I was actually constipated and that was why it felt so tender. When I developed the stiff neck I knew it was the shunt.

Is it possible to ring your Neurosurgeons secretary tomorrow or the ward you were on when you had the shunt done? I'm sure if you explain your symptoms they might ask you to go there straight away rather than having to wait. If not, like I said get your GP out on a home visit and hopefully he can rush things along for you. hug
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PostSubject: Re: Berenice - diagnosed 2009   Mon Jul 05, 2010 10:47 pm

Thank you I will ring tomorrow or pop in and see my gp. I'm lucky as she also works in the neuro dept at the local hospital one morning a week so she is pretty clued up :0)

I will keep you posted Smile sounds like you have been through the mill with this illness Is there a light at the end of tunnel or are you still having a major battle xx
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PostSubject: Re: Berenice - diagnosed 2009   Mon Jul 05, 2010 10:51 pm

There is definitely a light at the end of the tunnel honest Very Happy The VP shunt I have now has been brilliant for the past 2 years. Once they find out if your shunt's the problem and sort it, you should be able to get back to normal fingers crossed
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PostSubject: Re: Berenice - diagnosed 2009   Mon Jul 05, 2010 10:53 pm

Thank you so glad life will get back to normal. My little girl is fed up of having a grumpy mummy x
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PostSubject: Re: Berenice - diagnosed 2009   Mon Jul 12, 2010 7:13 am

Hi Toad,

As I read through your post and exchanges with Heidi, I figure out that you should heed Heidi's words and have your VP shunt checked sooner. Am confident that as soon as you notify your neurologist with this matter she can soon address the issue and you will all be back to normal. Having IIH is such a challenge and as years go by it becomes more and more challenging but no one needs to give up on anything. The medical advances we have today are progressive enough to improve the way of life of people with IIH.


Keeping faithful to the medications prescribed by our doctors and being actively involved in the process through constant dialogue with your doctor, living IIH would not be so tough after all. Again, I would like to welcome you in our fold here at ihaveiih and I am sure there will be more buddies and friends to share experiences and encouragement to lighten up your daily burdens a little at a time.

Keep in touch and wish you a great day.

Saleh
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PostSubject: Re: Berenice - diagnosed 2009   Tue Jul 13, 2010 8:20 pm

Hello

Thanks for the welcome! I did indeed heed Heidi's kind words and phoned my neurologists secretary for an appt. The earliest he could see me was today. He would like me to be readmitted for a few days for tests (mri scan,lumbar puncture) and he is going to arrange for my neurosurgeon to visit me while I'm there
I am currently at home awaiting the phonecall to tell me they have a bed available which may take a week or so.
Fingers crossed it will be soon.
Thanks again and I will keep you updated xx
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PostSubject: Re: Berenice - diagnosed 2009   Wed Jul 14, 2010 9:48 am

Hey Toad,

Glad that you heed Heidi's advice. I hope you're well and soon you'll be attended by your neurologist. It takes a little prodding to inform them of your condition from time to time but as you go along, they will be more perceptive of your needs. Just keep your hope and spirits up; we are just here for you.

Best regards,
Saleh
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PostSubject: Re: Berenice - diagnosed 2009   Mon Jul 26, 2010 12:42 am

Thought I'd post a update. I'm back at home after a 4 day stay in hospital. I've had various scans and x-rays and a Lp with a pressure of 35. They can't find anything out of place with my shunt so they have changed the setting on the valve from 170 to 120. My surgeon is away for a couple of weeks so I have to see how I go for the next few weeks and if there is no change to my symptoms they are going to replace the shunt.
At the moment I feel a bit better but still have a headache and sore neck but fingers crossed its the tail end of a low pressure headache.

Question for any members with a vp shunt When I wake in the morning I can feel my shunt and tubing but its barely there as the day progresses it seems to feel a hell of a lot bigger is sore and itchy all the way down and I gain an additional lump up above the valve and reservoir very close to my scar. Was wondering if this is normal?

Thanks xxx
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PostSubject: Re: Berenice - diagnosed 2009   Thu Aug 05, 2010 10:56 pm

Hi there, I'm so sorry I'm only just replying but I've unfortunately been without the internet for the past week or so. I'm so glad to see that there is a light at the end of the tunnel regarding your shunt.

As to the shunt question, I have to admit I've not had this problem with my shunt, although it does occasionally itch around the scar tissue, which I think is probably because it's sensitive there. about the additional lump, I would say that's something you need to check out with either your doctor or neurosurgeon. I wouldn't like to speculate as to why this happens and that's why your best bet is your doctors. Keep a record of it, so you can give them a full report about it.

It might be worth giving your neurosurgeons secretary a ring and she can pass your message on about it if he isn't available, and hopefully will get back to your asap.

Hope this has helped a bit. hug
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PostSubject: Re: Berenice - diagnosed 2009   Sun Aug 15, 2010 10:30 pm

Hi Heidi

Thanks for replying Smile I'm still playing it by ear at the moment. After having an lp and the valve setting changed I had nearly 2 weeks of feeling like my old self but this week the headache has been back with a vengeance and the neck stiffness :( however it was the week before my period and that has always been my worst time. So I'm waiting now to see if the headaches go away with the end of my period. I can cope with having a week and a half of symptoms so long as I get normality the rest of the month Smile If it doesn't fade away then I guess I'll have to ring my surgeon again.

How are you? xxx
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PostSubject: Re: Berenice - diagnosed 2009   Mon Aug 16, 2010 7:00 pm

I have to admit even with my VP shunt and sub temporal decompressions, I still have bad headache days just before and during my periods. I also suffer with the weather too. I think you're wise to wait and see if this is the case, if you keep a written record you will be able to see a pattern, and it will help you to discuss it with your Neurologist. for you
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