goldfish.girl Posted August 1, 2012 Share Posted August 1, 2012 Hi, I've just been reminded of the many members who have had Shunts fitted and thought I'd ask a question of them. The question is in relation to my son, not my own SAH and I hope it is OK to ask it here? He had a Peritoneal Shunt fitted in Jan 2011. Apparently the cyst squashing his brain & the damage caused followed by surgery through his skull are not relevant to any headaches or fatigue he has suffered since AND the shunt which goes from his brain, just under the surface of his skin all the way to the drainage point in his abdomen has nothing to do with the constant sickness & diahroeah he has suffered since the operation.The sickness has got better, the constant 'runs' have not yet (18 months later). I also have to mention at this point that his intra skull operation is not classed as, as invasive as my own coiling operations to treat SAH???? (Certainly felt worse as a mother waiting for news I have to say!) Have any other members with a shunt to their abdomen had this? The shunt drains any build up of fluid from his brain to his tummy. He was a fully healthy child before the operation & to my mind, a foreign fluid draining into his abdomen is the only cause of his new status. Neuro Doctors disagree and say there is no cause for his stomach problems,(as well as denying any possible link between brain surgery and headache or fatigue, hence my lack of belief in their opinion) the non 'brain' doctors agree that the irritation from a non-natural fluid to his tummy are the cause as they did not exist before. I'd would be really interested to hear any other 'shunt patient' experiences on this before I go back to do battle at his next appointment in September p Thank you xx Quote Link to comment Share on other sites More sharing options...
Super Mario Posted August 1, 2012 Share Posted August 1, 2012 GG, I have a shunt fitted and have no problems whatsoever. The differance could be that I am an adult and he is a child. May it be prudent to ask the question on a hydrocephalus forum that pertains to children. Quote Link to comment Share on other sites More sharing options...
Sandi K Posted August 1, 2012 Share Posted August 1, 2012 Michelle, it must drive you around the bend when the neuro's advise the symptoms have nothing to do with the surgeries but it seems so obvious because none of this existed before. If they can't help why don't they refer you to someone who can? The 'brain business' should really take a team of specialists, not only neuro's but also all the people required after the brain has been 'injured' or 'fixed'. If a gastroenterologist (?) were to see Dylan and then work with the neuro to find help for Dylan it sure would make sense to me. Why are we always left asking all these questions and having to coordinate our care. The doctors who have the education should be working together to find a solution. How are you supposed to know who or what you need? I didn't even know there was a difference between a neurosurgeon and neurologist until 3 or 4 months after my SAH. I thought they were the same thing. Sandi K. Quote Link to comment Share on other sites More sharing options...
Louise Posted August 1, 2012 Share Posted August 1, 2012 Hi Michelle I’m printing this out for Ronnie as I’m not sure. But I have a shunt & I also have a tube which drains off excess fluid from my brain into my stomach now from time to time things get (as I put it) clogged up mostly because of the rotten weather & then my drain empty’s but its not the runs I wont go into details but after it empties I do tend to feel better not so lethargic. Not sure if this is any help or not...Yes it must drive you insane take care hugs hun... Quote Link to comment Share on other sites More sharing options...
Winb143 Posted August 1, 2012 Share Posted August 1, 2012 I have shunt in back right of head...with tube running down side of neck to tummy ....look I have scar to prove it ... Seriously I have had no problems since I had the shunt fitted...before shunt I remember nothing....a dreamlike state.... Sorry I cannot help you but all I can say...the shunt was good for me.. .sorry about son.. GG. Be Well Both of you xx Love WinB143 xx Quote Link to comment Share on other sites More sharing options...
goldfish.girl Posted August 1, 2012 Author Share Posted August 1, 2012 Thank you ladies. It seems to be inconclusive still. Interesting that you have occasional problems too Louise. He has had more blood tests & a stool sample tested recently and they are clear. Ah well, let the confusion continue Thank you for the replies - I thought I would just ask you all here to see if it was a common after effect of a shunt being fitted xx Quote Link to comment Share on other sites More sharing options...
Jane Posted August 1, 2012 Share Posted August 1, 2012 Has your son been tested for Coeliac Disease? I understand this can be triggered by surgery. I hope you manage to get it sorted soon. Jane Quote Link to comment Share on other sites More sharing options...
MaryB Posted August 1, 2012 Share Posted August 1, 2012 I have no information to add but the neuro people just drive me crazy - it seems if it is not a proven fact the symptoms are not real. I could go on forever with my distaste for the way I have treated over the years. I personally hate the way they study you when you talk- which I get is their job but fake it please a little. Sorry Dylan has to go through anything at all. That is what I see unfair in life! But I wonder if a diet diary would help maybe it is somehow related by the foods he eats. No one really believes me that fibro is a neuro issue more than a arthritis one ( as I have seen a number of Rheumatologist over the years but it still goes back to a mix up in our brain)---- but food is giant with fibro and IBS one of the problems people with fibro have. All of it goes hand & hand with fibro. & your brain. My theory is fibro is damage to the nerves sensory whatamacallit that has been damaged- FACT often after an "illness or accident" so that is why so many of us when I read about problems wonder why more Dr. have not tired any of the new Fibro medications that cover “pain, anti depressant, nerves pain and numbness” on more of us. I think it is one of the reason I have some issue under control?? I wonder??? Now being autoimmune you have to look us as a whole complication person. I have a host of allergic reactions even while taking a dose of Allegra 160my the am and a dose of Zyrtec in the PM often not combined to keep my reaction of Lichen Planus under control. I still discovered if I eat an apple – because of cross pollination of fruits and vegetables my tongue swells up and throat goes dry. I use special chemical free toothpaste called Cleure that I buy online prior to that it was like brushing my teeth with acid. REALLY. The first time I used the toothpaste it was so soothing, I could felt no pain what so ever. I am writing this as oral tissue basically is the same tissue that is in stomach, intestines and bowels, throat etc..Usually most problems start in gut… us “advanced” tissue people may move up higher. This is why maybe a diet diary is important. This was a giant finding for me as every day I felt like I was pouring acid in my mouth and one day I try a ANOTHER new product & it completely is pain free. My dermatologist now recommends this product. Anyway 2 years later during my dental exam I thought my mouth was numb as it did not hurt but it was healed so much from the no chemical toothpaste. This is my thoughts as well as a gluten free diet trial- which is hand in hand with fibro – which I believe now we ALL must have to some extent from my read everything on it the over the past 17 years. Sorry if it is more information that you asked for. Good Luck, XOXOXOX Maryballrightsomeday:-D Quote Link to comment Share on other sites More sharing options...
goldfish.girl Posted August 2, 2012 Author Share Posted August 2, 2012 Thank you Mary & Jane. I will have to look up coliac disease as I haven't heard of it. Michelle x Quote Link to comment Share on other sites More sharing options...
Recommended Posts
Join the conversation
You can post now and register later. If you have an account, sign in now to post with your account.
Note: Your post will require moderator approval before it will be visible.