headaches after LP shunt ........help

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kelley:
i had my LP shunt done 5 weeks ago, last week i started with severe headaches again and feeling nauseous and they have lasted the last week without any relief at all.They feel like high pressure rather than low as they do not go when i lie down .I went the the hospital n had tests eg xray,eyes and a LP under xray which i was relieved at as i don't have good results with LPs.the pressure from the LP was the right amount having the shunt in place , has anyone else had or have this problem and if so what was wrong and what was the outcome.

TRINITY1:
Hi Kelley  :wave

I moved your post here as its re your LP Shunt.

My daughter (7) had her LP shunt placed in Dec. She had to have it revised in Jan but its still not settled.  Sometimes (so I have been told), it takes your body a long time (months) to get used to the shunt.  Lana has high pressure headaches and low, but the high seem to be a bit too often at the moment.

She too has had xrays and her eyes checked and all was fine. She has non invasive pressure testing done at her hospital and this came out at 22. Her Neuro is wondering if her pressure is going up at night because thats when the worst high pressure headaches and nausea affect her. Does this happen to you or is it all the time?

We are back at the hospital on Wednesday (hopefully  :roll) and they will do further testing. The other theory is that she is constipated due to either the shunt rubbing on her bowel, or the constipation is causing her shunt to stop working because of the high pressure in her tum.....alas no one knows anything for sure :?.

Sorry I can't be of more help. But it is definitely worth telling the hospital if your headaches don't settle soon. They will just have to think of another batch of tests to do! :coolup

Take good care
Natalie :hug

kelley:
 :hello Natalie
                  well my headaches are all the time i don't seem to be getting any ease from them at all.I don't think they are low pressure as the don't go or ease when i lie down , i had an LP done last week at hospital when they did all the tests and the pressure was 16 which he said was what he would expect it to be with the shunt.
              i feel as if they think I'm lying as the tests have all come back normal , but something must be wrong as i feel sick and dizzy all the time and also I'm going hot n cold and clammy at times .
         hope things are getting better at your end and Lana is getting sorted , it would be nice if you let me know how she goes
        take care
                  Kelley xx :smile

LG:
Hi Kelley,

I'm home from hospital today after yet another week because of the same thing.

I've stumped the surgeons and have been referred back to neurologists to control the pain by medication.

Not happy with this solution as don't want to be a zombie.

Fed up fighting though and just going along with them. LP done yesterday was within normal range shunt is draining appointment with the neuro is not for another 6 weeks.

I've basically given up and resigned myself to a life of chronic pain.

Sorry to be so down

Lilias

Yumi:
My neurosurgeon, and pretty much everyone else has told me to expect the headaches to still be there. I've also read that the nerves can get used to mis-firing with IIH, and, as such you still end up having the headaches even with the pressure gone.

The other thing he told me?

Was to give my body 3-6 months to get used to the shunt. It's been malfunctioning for years, it suddenly has something new in it that is draining the fluid off, and has to learn how to work with it. As much as I want my setting lowered, I trust him. I'm going to wait the whole time.

I've had a LP shunt since August 13th of 2009. It had to be revised because the catheter in the my abdomen came out of the tubing, it was draining underneath my skin. Same symptoms came back as when my pressure was up. First revision October 23rd. Was due for a second one on Dec 11th, but found out I had oral abcesses. Finally got it done January 14th only to find out the reason for the revision was due to constipation causing an impaction and it popped the shunt out of place! In another month, we'll know for sure how I feel and see what he wants to do....but that's not the point of me telling my history.

They tried using X-rays to discover this....and we found out X-ray's alone DID NOT SHOW THIS. CT scans showed it though!

Only CT Scans. It helps to have both a shunt series and CT scan, but the CT scan showed them EXACTLY what was going on. If it's pulled out somewhere, the CT will show it. The X-rays are less able to show it. I refuse to leave the ER without a CT scan if I feel there is a problem

If you have a GP you can get to, tell them you want a CT scan of your abdomen. If you've had ANY pain there, tell them. My main symptom was pain in my spine, and then my abdominal incision started to hurt... Then the headaches got worse, etc.

I'm in the US, I know things work differently in the UK, but my position is, if I feel something is wrong, there's a good chance it is. And I am not going to stop until we find out WHAT it is...

I've got a killer headache, hope I was able to convey myself properly  through this fog...

Mystina

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