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 HELP! Advice anyone?

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laurataylor92
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PostSubject: HELP! Advice anyone?   Wed Dec 14, 2011 4:28 am

Has anyone else had this cyst or pocket of fluid?

So I have a question..
I had my shunt placed October 24th 2011, haven't really been on this website since. Anyway, I had the surgery then it moved so there is another surgery on the 26th of October. So it had been a little over a month when I couldnt stand the pain anymore, so I went in to the ER, they did an ultrasound and found a pocket of fluid, the US tech told me it was normal, but then I was in the ER for almost 9 hours, my surgeon told me I would have to have another surgery. So they took the lower part of my shunt out, and had my CSF fluid drip into a bag that was connected to a tube that came out of my neck area. Apparently it was a fake cyst... Never heard of this, extreme pain, so of course I was pumped full of pain meds, did nothing... But I had my fourth surgery to move my shunt and put the lower part back in. I have had four surgeries in less than 2 months, I have 6 scars. Has anyone else had this cyst or pocket of fluid? I just dont want to be alone in all this. Please help!


Laura.
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medmisfit
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PostSubject: Re: HELP! Advice anyone?   Wed Dec 14, 2011 6:38 pm

Laura,

I can't even imagine how you must feel at this point and I'm so sorry it's been so difficult! I haven't heard of the cyst or fluid pocket, but you could probably find information from ihrfoundation.org. If they don't have anything on the site, you can always contact them. I haven't talked to them directly, but I know other members have gotten a lot of support from them.

I hope this surgery is successful and you find relief soon!!!
hug
Take care and keep us posted,
Julie

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Heidi
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PostSubject: Re: HELP! Advice anyone?   Wed Dec 14, 2011 7:25 pm

Hi Laura, this happened to me too. I had to have 2 surgeries in 24 hours because of the shunt leaking in my abdomen and causing fluid pockets. This has happened to me three times so far with 2 shunts, and my stomach now looks like a patchwork quilt. At the time like you I was in a lot of pain and was pumped full of meds. I have since learned that sometimes if the end isn't secured enough in the abdomen that this can happen. I've had this VP shunt for 3 years now and with no problems so far. Hopefully they will have secured yours successfully to prevent it happening again. hug

Heidi
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laurataylor92
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PostSubject: Re: HELP! Advice anyone?   Fri Dec 16, 2011 7:17 pm

Thank you all so much,
I don't think I would ever make it without the support on this website,
because the doctors never do seem to answer my questions.
The odd thing is I get home and its been about 2 weeks since ive been home and I hurt worse than I did before the surgeries.. It takes me 3 to 4 hours to sit up first thing in the morning cuz if I get up right away my head and body hurt like a 10 all day long, if I wait its maybe about a 9 all day long. The doctors don't really know why, but I am freaking out because I hurt worse than I did before I had this thing put inside me. I have been told I will live in chronic pain for the rest of my life due to this wonderful illness, is it supposed to be like this? I know it takes months to feel relief, but I didn't think I would be getting worse, my post op appointment is the 23rd. If I could get some advice or something that would be great. Thanks again all.


Laura.
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Heidi
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PostSubject: Re: HELP! Advice anyone?   Sat Dec 17, 2011 4:59 pm

What you could be experiencing is the after effects of having so many surgeries in such a short space of time. There will be the effects of leaking spinal fluid, plus the tenderness and inflammation of the wound sites, healing and scar tissue both external and internal, on top of the effects of the anaesthetic.

In 3 years I had 22 Neuro surgeries due to one thing and another, and it took me longer each time to get over them, especially when they were going into the same scars. The tunnelling of the catheter tube they do, makes all your torso sore for a while because of the internal bruising and things.

I think when you go for your post op, ask if there is a chance that your shunt is either leaking or overdraining, because you are experiencing headaches. To make sure you cover everything with them, and to ensure they cover everything with you, read up on the following information and prepare questions to put to him that he must answer to work out what is going on. Also keep a Symptom Log so that you give him the full picture of what is going on.

Ask if it is overdraining, underdraining, blocked, could it be a malfunction, infection, Chiari or even Slit Ventricle Syndrome ?

Don't be alarmed by some of the things listed there for you, they are just things that you can put to them as possible causes which of course he will be able to explain to you and rule out. I'm just trying to give you as much information about these things as I can, so that when you go to you appointment you are well informed and more able to question what is going on with you.
I hope this helps hug, and anything you need to know etc just let us know. Keep us updated Very Happy
Heidi xx

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