[gill105]

Hi all,

Havent been on in months so just thought id pop in again. Oralith is doing fine although she was diagnosed in November with epilepsy. She had had 6 "episodes" from march 07 to november07 where we had to get her straight into a&e. I thought it was the shunt and the drs here told us not to take any chances if at all worried just head straight to hospital. Anyway what was happening was one minute she would be fine, then she would go grey, her head would drop to the left with her eyes turning down to the left, she wouldnt be able to look up, then the vommiting and then she would go unconcious. By the time we would get her to the hospital she would be cranky but doing fine. In november it happened again but she didnt vomit so i went straight to our gp who said she was having an epileptic seizure.

So up to the hospital where they did an eeg and said there was definite abnormal brain activity and she was put on epilim to control the seizures. It is a mild form and since she started the meds she has been seizure free. They are not surprised with this development as they said a lot of people with hydro do develop epilepsy

She also saw her paed last week who said we dont need to undergo more tests. O has low muscle tone in her hips pelvis and legs and they were worried it maybe from some other underlying condition. thankfully with physio she is now crawling and the muscle tone is increasing so some great news there.

One thing i did want to ask. Our surgeon has discharged orlaith from his clinic(he did say any worries ring and we will get an appt to see him asap) as he doubts she would need anymore surgery. He said the shunt should do her for life, obviously as it is man made it can malfunction, we do know that but he said it is very rare. So why is it so many people here seem to have a lot of operations? I hope i dont sound cheeky, im just very curious.

[mjb1966uk]

Originally Posted by gill105

So why is it so many people here seem to have a lot of operations? I hope i dont sound cheeky, im just very curious.

Not cheeky at all.

Shunt malfunction is very rare?? If your surgeon said that then he's seriously misleading you. The average life of a shunt (according to various sources on the web) is 7-10 years.

I would say that most people, in a lifetime, would have at least half a dozen surgeries.

However, that's based on the current design (which has been in use for over 50 years) and doesn't take into account any advances in technology and treatment that may happen in the future.

I've been lucky in that I've had 4 surgeries in 41 years (had hydrocephalus from birth).

The reason some people have had many shunt revisions is that it can be difficult to get the right shunt. Low pressure, medium, high, programmable, VP, VA. Different shunts suit different people. Also there is always (usually within the first year after surgery) the risk of infection / rejection of the shunt as a foreign body.

Shunts, also, can become occluded. Bodily material (cells, scar tissue) can block the shunt and cause a malfunction.

I'm not scaremongering here, just being realistic.

The bottom line is, the need for shunt revision is down to luck. You can't control whether blockage, infection, disconnection or breakage happens.

On the bright side, you can go for quite some time without a shunt revision. My third shunt lasted 27 years.

I wish you and Orlaith all the best.

Mark.

[gill105]

Thanks mark,

I didnt think you were scaremongering me, finding out that my beautiful baby may not survive past birth was the most scariest thing i have heard.

He definitely said that the shunt can last for life, he did tell us all the reasons why it may not too. He said for some reason that around the age of 11 is a time when some need to be replaced due to the child taking a big stretch in height.

Thankfully we have gotten over the first year rejection, but i think i will write a letter into his clinic to get clarification. I know he cant guarantee that orlaith may not need anymore surgery but he was definitely optimistic that she may not.

Gillian

[LIZARD]

Originally Posted by gill105

One thing i did want to ask. Our surgeon has discharged orlaith from his clinic(he did say any worries ring and we will get an appt to see him asap) as he doubts she would need anymore surgery. He said the shunt should do her for life, obviously as it is man made it can malfunction, we do know that but he said it is very rare. So why is it so many people here seem to have a lot of operations? I hope i dont sound cheeky, im just very curious.

Well, it's probably just as well that he unloaded you so you're rid of him, 'cause he's clueless. Shunt malfunction is most certainly not "rare." It will in fact occur multiple times throughout a typical hydro patient's life.

Please find another nsg immediately. A single shunt will not last a child for life. Even if there are no problems with cracking, breaking, or blockage in the first 10 years or so, they rarely last more than 25 years. The longest I know of anyone going with a single shunt and no surgery of any kind on it is 39 1/2 years, and I know a lot of hydro patients. This is a very rare occurrence. You do not want to be stuck with her needing emergency surgery and have no nsg. Find another one right away.



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[gill105]

Thanks for the replys. Orlaith is still under her neurologist and always will be, she is currently getting a 6 monthly full medical review but her paediatrician has said if i have any worries to just ring and an appointment will be made availabe asap to see them. So should her shunt be checked on a regular basis to see if it is working?? am i making sense??

I was telling my husband about this and he said the surgeon definitely said that she may never have problems with the shunt, ,maybe im taking maybe up to mean more than it is so i have an appointment with our local gp and will have a chat with him, he has 6 other patients with shunts on his books so im sure he will be able to point me in the right direction.

On a plus side orlaith has started to crawl and is into everything, its sometimes very easy to forget that she has the shunt, and then other days it justs hits me that it can all go wrong.

[LIZARD]

Originally Posted by gill105

So should her shunt be checked on a regular basis to see if it is working?? am i making sense??

Yes, she should be followed regularly by a nsg throughout her childhood and at least every few years as an adult, depending on how she's doing. Hydro is a lifelong condition. I would find another nsg, too. That guy really is clueless.

I know what you mean about being able to occasionally forget about hydro and the shunt for awhile. I do, too. I also have very clear memory of my last surgery, so I'm grounded in that way.

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