Hi

I have had IIH for 3 years now. I had my first LP shunt placed
3weeks after diagnoses then another placed 17months after as the first
failed which is now 20months, I've had nothing but bother with the shunt
causing pain along the shunt site, and severe headaches.All LP's have
been 20-23 but the Surgeons say is fine.

I recently had a baby
(6 weeks) which was an Emergency Cesarian under General Anesthetic birth
and the Obstetrician ended up showing the shunt. He cleaned it then put
it back where it was before. He was on the phone to a NeuroSurgeon in
the hospital where I got the LP shunt placed. Which is a different
hospital to where my Surgeon is now.

Since the birth. Everytime I
cough, sneeze, bend down, lie down my headache gets worse and I feel
the pressure. After a few hours the pressure goes and leaves a headache
that can be severe or just a slight headache. I can also feel pressure
in my nose and down my face. I also have neck pain and the light hurts
my eyes. I also feel pressure behind my eyes.

I have not had my
eyes checked for 5months as the Opath messed up my appointments last
week and just had my down for a feild test and not a Consultant
appointment. I will go to Opticians to get my eye checked as I don't
have an appointment for 4months to see my opath.

Has anyone had the problems I'm having? Does it mean my shunt is on it's way out?

I have tried to tell the Surgeon but he doesn't take me seriously and doesn't really want to treat me.

I don't know a lot about shunts, don't have one. but it does sound like you are having high pressure symptoms that indicate your shunt is not working well. you definitely need to get your eyes checked if that has been an issue before. I'll tell you that my ICPs on LP were 22 and 23, but I had improvement after my LPs and I worsen with anything that would raise ICP, and get better with a dose of Lasix. my main symptom is brain fog although I will get the terrible headaches at times. I never had papilledema, although did have some eye symptoms that were diagnosed in retrospect as ocular migraine. these symptoms went away by the time I went for my annual ophthalmology check, but it was also a month after I'd started CPAP. for a long time I thought my problem was just sleep apnea, since I got better when I managed my airway in sleep. From the time I "crashed" to diagnosis was 2.5 yrs. in retrospect I've had IIH since 12 yrs ago at least, with symptoms coming and going before staying for good in 2009. anyway, what I had wanted to point out to you is that you could still have disabling ICP symptoms at the pressures your NSG said was normal. those pressures are in the borderline range and you should find a NSG who will drop your pressures below 20.
good luck! and welcome to the forum! I hope you find the support and info that you need. there is always someone here to help you out.
Deb

Hello Melli-Lellie and

I also am surprised that your docs thought that pressure in the 20's is fine for someone who has been shunted. That ICP is way too high. It should be in the low to mid teens. My opening pressures pre-shunt were between 22 and 24!! The symptoms you are describing sure do sound like you have high pressure. Either your shunt's valve is set too high (if it has an adjustable shunt) or it has failed. Please contact your NS right away and explain what is going on. Sounds like your ob/gyn screwed up and now you are paying the price. That is so not fair!!

I agree ... I think you should insist on a neurosurgeon looking into this further. You know that something is not right, it sounds like you can tell by how you're feeling. And it's entirely possible based on what happened during your c-section, that something has changed with your shunt and it needs to be checked out. I know it's frustrating that they are not listening, but please be persistent. You know your body. *hugs*

By the way, congrats on the new baby!!

Congratualtions on your new baby . I agree with the ladies you need to have your Neurosurgeon check your shunt placement, as it's very possible that the end that's in your abdomen has been compromised during your C section. Please keep us updated and I do hope this is sorted for you soon, so that you can enjoy your baby.