Hailie returns tomorrow for a MRI, shunt tap and series. NS suspects her tummy area is irritated and not allowing the shunt to drain properly. My heart breaks for her as she is so brave. We need to get her fixed asap, I start my new job next Wednesday, and I have to because our finances are a wreck. Anyone had any experience with shunt line irritation?

((((((((((((((((Becki))))))))))))))))))) and (((((((((((((Hailie)))))))))))))))).

I guess it would depend on the kind of irritation you mean. I have had soreness and even stabbing-like pains in my incision area even fairly recently (a few years ago) that went away over time. It was usually a gas bubble or something pushing against the scar tissue. Hurts like a mutha , but it does go away after an hour or two. If it's irritation related to drainage, I don't know what to say except I'm sorry, and (((((((((((((HUGS)))))))))))))). Damn, damn, damn! Poor kid can't get a break!!

I wish I had additional words of wisdom for you. Please let us know what you learn from the doc.


LIZARD

Hi Becki,

So so sorry to hear about that. Been thinking of you both today. There were a few people who'd had line irritations on the old Braintalk site - one was called Darren who really had problems with it - but I haven't seen him on this one so far. I befriended a lady in hospital last month who had bad irritation with her VP shunt 3 years ago. Apparently her tube wound round her stomach, so it went from one side right over to the other, so to speak and she started to have crippling pains in her abdomen a few weeks after the operation. She said that the tip of the catheter had moved out of place and was 'tickling' the underside of her diaphragm and causing such irritation that she too had worsening headaches because everything got inflamed and the absorption of the stomach lining lessened so not so much fluid was absorbed. She emailed me all this only a couple of days ago, as I was telling her about my bad pains too. In the end her NS opened up just her tummy end, re-positioned the tube....and that was it. She felt better, the pains stopped and her headaches improved. Her abdominal pain used to radiate to her shoulder, all the way up her arm. I don't know if Hailie's had shoulder pain too? Trudi (my hospital buddie) said the op to repostion the tube was minor and she was just saw with the usual post-op abdomen pain until the scar healed. I so hope this is all that needs to be done, although MORE surgery is just what you didn't want It sounds like her NS is on the case and hopefully tomorrow you'll have more answers. All this and a new job to start too! Am thinking of you all, as always. Keep us posted if you can and look after yourself and BIG HUGS to you and Hailie. xx

thanks for the knowledge, that would be great. She does complain quite often of her shoulder hurting also, but I never actually ever made a connection, I figured maybe she was sleeping wrong or something. He(NS) feels since it has been over 2+ months since the shunt was converted va to vp it shouldn't be post-surgical, taking into account the fact that her tummy never really handled the line draining there, that is why it was moved back and forth there twice, once in the perotineal(chest cavity) and once va. The pain generally last days and is not positional either. We'll find out tomorrow, keeping fingers crossed, only going into the stomach sounds great to us, but definately better than another revision.

Hope and pray all goes well for Hailie, and that she can stay well for a long long while, while you begin this new job
{{Hugs}}
you've got a lot on your plate, remember to take care of yourself too, Keeping {Hailie}in our thoughts and prayers
Wishing you health and love
Deborah

I am so sorry to hear that Becki. I wish I had answers... but tonight I just have questions... I'll be praying for you guys!

We're home for now. NS agrees that the shunt needs to be moved. His thought is it may be irritating a certain area like the liver or other vital organ. They are in the process of scheduling a laproscopic surgery to move the cath a little, nothing major. 2nd issue- not quite sure whats going on in her head, she may be having shunt failure, but the mri scans still looked ok, with svs, she rarely shows vent size change so we are on high alert for shunt failure, he wants us to wait 2 to 3 weeks for the laproscopic to make sure she won't need a revision, and in that case they would take care of both at the same time. New issue-apparantly her cranial expansion has some defects. Three of the suture lines are collapsing and her skull actually looks like a bowling ball, with three finger holes, he was pretty upset about it. Its more of a cosmetic issue than an actual health issue so next revision(we're so optimistic aren't we) He can fill that in and reconstruct her skull again, or do it when we want to. It is very obvious, but nothing pressing. If her shunt truly is failing her will take care of all three in one shot, not that I am hoping for a revision but 1 surgery would be better than 3 more. Thanks for all your info, at least we finally have some answers. My new job starts Wednesday, so dad is going to fill in for a while with the doctor trips.(Scary thought), don't get me wrong he is a good dad, but not very observant or familiar with Hailie's medical symptoms, conditions and medications, I guess he's never had to be up till now. Prayers for him, he is in for quite an eye opening. take care everyone.

Awwwwww Becki! My heart half sank when I read that, but the other half was slightly relieved that at least they found something causing the pain and felt they could do something about it. It's always such a double-edged sword, eh? Wasn't too clear on the shunt revision side of things...so the scans look normal and if she can wait for the laproscopic they'll check the shunt during that operation and if necessary revise it then? Is that what you meant? Sorry, still a little bit of brain fug going on with me, post-op! And you're right...1 op is better than 3. How does Hailie feel about all this? She must be absolutely sick and tired of hospitals, and I'll bet she's not the only one. Please tell her I'm thinking of her and wishing her better. Maybe in a way it'll be good for you to have your job and get some daily sense of normality for a bit. Hospitals can send you stir crazy. I'm sure your other half will rise to the challenge...when my pressure was rising way too high last month in hospital, Mum wasn't there for a bit but Dad was...Mum's usually the one in charge, like you! But as soon as he realised I was in trouble, he literally sprinted to get me help, which arrived in less than two minutes. I hadn't even realised he was watching me so closely! I'm sure you can rest easy! Anyway, keep us all posted and BIG HUGS TO YOU ALL. x