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morrise
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PostSubject: Advice needed   Tue Oct 01, 2013 11:42 pm

First topic message reminder :

I'm wondering if anyone can help me. I have a revision on my LP shunt nearly 3 weeks ago. The part at the stomach came out and they fixed it. I was fine until Saturday i woke up with excrutiating pain at the base of my skull and neck. It feels like something is pulling at the back of my neck hard to describe. I went to A & E yesterday got a scan on my stomach. I met with a neurosurgeon who advised that the shunt was in place and all was ok. I asked him what the pain was - could it be the shunt not working properly or could it be blocked. He advised me that I needed to see a neurologist to find that out. He basically dismissed my pain. I was sent home with an appt to see a neurologist today. I seen the neurologist and he advised that a test should have been done by the neurosurgeon to see if the shunt was blocked or working. As he is not my original neurologist he can't get involved. He was very good and contacted my neurologist who is another hospital and I see him tomorrow. I have to tell him my story and try convince him to contact the neurosurgeon team to get the shunt investigated. Has this happened to anyone else. I'm not very fond of this neurologist and I'm afraid he will dismiss my pain and I will get nowhere. I've lost 5 pounds in weight since Saturday due to the pain and not being able to eat. I have an ice pack permanently at the base of my skull and taking painkillers every 4 hours. I'm so upset at the way I am being treated. 
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medmisfit
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PostSubject: Re: Advice needed   Fri Nov 15, 2013 2:34 pm

That is great news! Sounds like your persistence has really paid off..good job!!! It definitely makes it easier to take when you can see the light at the end of the tunnel..hang in there!!!
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Heidi
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PostSubject: Re: Advice needed   Fri Nov 15, 2013 5:00 pm

Great news!! I'm all for taking matters into your own hands approach. You were absolutely right to, and I hope that other members take inspiration and do the same thing when necessary. Fingers crossed that things now get sorted for you, and quickly. hug
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morrise
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PostSubject: Re: Advice needed   Tue Nov 26, 2013 8:59 pm

Finally getting to see my neurologist on Friday,  What do I need to do to get him to believe me that my shunt is overdraining and that a pressure of is too low for me.  I know I can go through all my symptoms.  I just so afraid he's not going to believe me and send me for tests to see if it it something else

 These are the symptoms I have on a daily basis and sent in my letter to him

- dragging sensation from ears to neck on both sides
- pain in both ears - feels like they are bleeding
- sharp pains in scalp & tight hair - like my hair is being plucked & sunburned type of feeling (finding the cold morning very sore)
- headaches - mostly low pressure by the evening, feels better when I lay down
- heavy head- feels like my head is really heavy and falls back, I have to pull it forward
- blurred vision in right ear - its not constant only happens a few times throughout the day ( confused about this as I always had blurred vision when my optic nerves were swollen)
- pinched nerve on right side of neck- goes from base of skull into my neck, happens a couple of times a day and last a couple of seconds.  Somedays it happens alot other days only happens a handful of times
- balance, light headedness & when walking feel like I'm walking off balance

- lump(golf ball size, soft when I touch it) appear above the scar on my back.  It is not there all the time mainly in the evenings and gone by the morning.  I did mention this Mr David O'Brien when I met him on the 11th October and my husband showed him a picture of it.  He advised that it was a fluid pocket and was normal and nothing to worry about.

I have lost 2 stone in weight since my operation on the 28th of May 2013 so this is why I think my shunt is now overdraining and I no longer need it.

Any advise would be much appreciated xxxx
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Wylee
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PostSubject: Re: Advice needed   Wed Nov 27, 2013 3:01 am

I would print out articles on low pressure and low pressure symptoms, such as this one from Johns Hopkins, one of the top IIH Hospitals in the U.S.:  Johns Hopkins - low CSP

Be firm and assertive but not threatening.  Can you have a male figure come with you?  Sometimes the docs will "listen" better if they hear it validated by a male!!
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PostSubject: Re: Advice needed   Wed Nov 27, 2013 6:48 pm

None of that sounds normal! The point of having a shunt is that you don't experience any symptoms, and the fluid pocket being normal is the first I've heard, whenever I've had a fluid pocket I've been whipped off down to the theatre to have it sorted out.  The fluid pocket  could indicate that the end of the catheter in the shunt is moving about and not anchored as it should be. Your symptoms alone indicate the shunt isn't working as it should be. LP shunts are known to migrate.

I myself had an LP shunt for 5 years until it was revised to a VP shunt, at one stage I had both, but the second LP shunt caused a fluid pocket at the base of my spine which was aspirated but then led to meningitis, so it was removed. I am concerned that your Doctor is not at all concerned regarding this intermittent fluid pocket, and is quite happy to leave it, without considering the risks of doing so. I agree with Linda, take someone with you when you go, and insist that this is properly investigated. If he insists that it is normal and there is no need, demand a second opinion.


Last edited by Heidi on Thu Nov 28, 2013 5:10 pm; edited 1 time in total
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PostSubject: Re: Advice needed   Thu Nov 28, 2013 1:11 am

this is what I think is going on: your neurosurg is taking advantage of the fact there is no one else in Dublin who does what he does.  he doesn't have any consequences to being piss poor at what he does, to not knowing what he is doing, because he has no competition.  Dublin was probably desperate to have the services, since there is no one else, so no one is going to say boo even if the other docs know he sucks.  if there is a patient advocate system you may need to activate something major so that you can be taken care of properly.  the insurance system you are in must offer a second opinion, even if you must travel.  I travel all over the US to get proper medical care.
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morrise
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PostSubject: Re: Advice needed   Thu Nov 28, 2013 8:42 pm

Thanks everyone,  I will let you know how I get on.  My husband is coming with me, he's great at talking to docs and not taking any cr*p xxx
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morrise
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PostSubject: Re: Advice needed   Fri Nov 29, 2013 9:34 pm

Appt went well today, mush better than I thought.  My neurologist was in agreement that my shunt is overdraining.  He is going to contact my neurosurgeon and request that the shunt be removed.  Once its removed we will start over and see what happens.  Felt positive leaving.  I know it will be another few weeks before it happens but at least I'm getting somewhere.
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PostSubject: Re: Advice needed   Mon Dec 02, 2013 8:49 pm

I'm so glad to hear it went well! I hope they have you feeling better soon!!!!!
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PostSubject: Re: Advice needed   Mon Dec 02, 2013 11:56 pm

I just wish they would consider installing a programmable valve in your shunt.  It eliminates the over draining from happening.  Anything we can do to help?
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PostSubject: Re: Advice needed   Tue Dec 03, 2013 2:39 am

Hi Morrise, so sorry to hear about your current situation and the pain your in. Be strong and keep fighting. I'm learning so much about IIH and symptoms but I don't like to hear about the suffering :( take care and be strong.
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PostSubject: Re: Advice needed   Fri Dec 13, 2013 10:39 pm

Update:
Met my neurosurgeon today, he's happy to take out my shunt as I definitely have low pressure symptoms.  I've only been saying this since the 30th of September!!.  I'l be getting it done early January but will be an the cancellation list from 30th December.  I'm just happy that I'll be getting it out.  He does also think that the shunt is not the only problem as alot of the symptoms I describe are indicating Chiari.  I had a scan in Oct and there was no change then but he's sending me for another one. Fingers crossed its not but I'll worry about that later if it is.

Also he thinks the reason the shunt is overdraining is because I lost weight too quickly, at no fault of my own.  In September when I had the revision, I was in a lot of pain when it broke and from the operation my body went into shock and I dropped nearly a stone in weight in 10 days.  I have also lost another stone since and my symptoms have just got worse.  I am very underweight now.  I have always been a healthy weight and many times asked before getting the shunt would losing weight help the condition as I had read that it would but was always told no as I was a normal weight and I was an exception to the usual theory in weight being a factor in the condition.  Has this happened to others.  My fear now is when I get it out do I need to stay at this weight to help the condition.  I look very unhealthy and my family & friends are really worried about me
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PostSubject: Re: Advice needed   Mon Dec 16, 2013 5:48 pm

I had all kinds of red flags going off as I was reading your post. You lost weight and look unhealthy because you are..your shunt isn't functioning properly and stresses your system. I had issues with LP shunt overdraining..it's caused by mechanical issues of the shunt or valve, not weight changes. Your ICP can fluctuate with weight changes, but relief can be permanent or temporary. I understand them agreeing to a revision, but you were feeling really good when shunt was functioning properly..I'd be concerned about high pressure symptoms returning if they take it out completely.

I also developed a Chiari Malformation as a result of the LP shunt, and overdraining exacerbated my symptoms. The LP shunt pulls fluid from your spine, which can also pull brain down if it's draining too much. They moved my shunt to the highest setting and symptoms are much better now. They said the Chiari could reverse itself over time, but would take years if changed at all. I'd talk to them about VP shunt options and a programmable valve before I'd agree to have it removed..only because you were doing so well when it was working properly.

I hope this makes sense..take care and hopefully you'll get relief soon!
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Wylee
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PostSubject: Re: Advice needed   Wed Dec 18, 2013 4:16 am

I still say it may require leaving Ireland to be properly treated. I agree with Julie. When your shunt was working correctly you felt great. Without the valve on your shunt it allows over draining, causing the low pressure symptoms, which tend to be worse than high pressure. If your docs there in Dublin insist on NOT installing a valve to prevent overdraining, than you need to go where they will.

Heidi, anything that can be done in the UK?
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