Whenever I run, bike or exercise (exert myself) it brings on a headache. My headaches are not severe, they are a 1-4/10. I used to have an LP shunt, it worked for two weeks. I had issues with it because it not only kinked, but also over drained my spine (I had Chiari prior to having an LP shunt placed, but my NS was not concerned about it-at least not enough for an LP shunt to affect it). I now have a VP shunt and had surgery for the decompression.
Do you think yours is kinked? I know when my shunt was kinked I had all my symptoms come back. When it was over draining my spine it wasn't over draining my head because of the Chiari. I was having high pressure headaches and was miserable.
What are your symptoms, anything besides headaches?
Mallory

I am so sorry he treated you that way, you should not have put up with it.
Hugs to you Angie.

I had an LP shunt from 1991 through 2012. It was just removed and replaced with a VP shunt. Shunts don't take the headaches away forever, but they do make their incidence and length of time a lot less. When I had my LP shunt I would occasionally get a headache, but they never lasted for more than a day or two (with the exception of my pregnancies, when the shunt was working but simply couldn't handle the excess fluid/low absorption due to the hormonal changes of pregnancy).

My VP shunt is very new, so I can't really speak on it. I've only had it for about a month now, but I have no reason to suspect that it will be any different.

There are many here who have PTC as well as migraines. For this doc to tell you otherwise is simply false. And if anyone ever tells me to turn off my shunt, forget about it - there's no way I would ever do that. My shunt is one of my BFFs, and I definitely need it.

I'm also really sorry you had to go through this, Angie. I would suggest that you get a second opinion from another doc...

Hi Angie,what utter nonsense! This so called specialist obviously does not know his stuff.
While, it is still widely agreed, that shunts, in the first place work and second , stop the hds , the more study being done now suggest none of it is true. Or, I should say, at least 50% of shunt patients still have symptoms post shunting.

My story is one that supports this. I have a VP shunt since Nov 08.I have had very little trouble with the shunt, no revisions etc, but...it stopped" working" after 10 days
By working I mean, it no longer is able to handle the amount of csf my body produces daily.
My opening pressure is always in the mid 30s but I guess its better than prior shutting, when it was 49.

I had clear vision and no hds for all of10 days. It was wonderful! Then all my symptoms came back. I guess the best I can say about it all is that it has saved my sight, which was severely compromised at the time.
I was to have a second VP shunt done a few months later but unfortunately my ventricles had collapsed by then , so no more shunts .

Saying all that, I am still glad |I got it done. There was always the hope that it would work , for me, but now I don even have that.

Last year when my drs became concerned about me taking pain meds long term, I made a deal with them. I would undergo an lp and if my op was higher than 25, I would be allowed take the pain meds with out any more hassle.
My opening pressure? 34. End of fighting!

Thats my story but of course there are people whose shunt does work and they still have bad hds. I know Sea sprite has always advocated for pain management people. I know they helped her a lot so maybe this might help you?

I must also add, unfortunately, that you must be super prepared before every vist with a dr when you have IIH. Or, like happened to you, you will be caught and blindsided. Such a waste of your valuable time and going home upset.
Everyone one has to work so hard to know at the very least, as much as the drs if not more.
Its the only way to get ahead with them and to get the best care they can give you.

I am so sorry that you had to go thru all this. Next time, and make another apt! be ready for him! And win. Cath

I can't give you a lot of advice about shunts since I don't have one but I will encourage you to get another opinion as this is something I have done myself a lot lately in the last 2 years.
I treat new doctor visits like intereviews now - I know how bad this sounds but they are interviewing to treat me - I have to like them, trust them, and trust that the knowledge they have on IH is accurate with what I have heard from other drs, read online in studies and have heard from other experiened IH'ers like ourselves on here. You have to feel comfortable with who you see and I would not shut your shunt off without your NS advice to do so.
:) Mandy

I have not had my LP shunt for very long (only since April), but my headaches are not gone. The swelling in my optic nerves is now almost gone and that has helped me feel better. I am still taking Topamax and pain meds and I have not been able to get by without them.
My NS told me before he did my surgery that it was to save my sight and that it may or may not help my headaches. It was like a disclaimer prior to surgery.
I'm with everyone else that says to get another opinion. Having an MD title does not necessarily mean a doctor knows what they're talking about.
Brandee

~ My Shunt is not kinked it is working. 3 weeks ago I had to lower the setting Again ! dropping it by 10 down to 70,it only goes to 20 at that point it will be wide open. What is happening is every time it is reset or lowerd my body readjusts and then starts making more csf just to do it all over again,go back in every few mths to have it lowered... After it's lowered and my body catches up and starts making more most of the IH sx come back,ringing in the ear,blured vision,nausea,vomiting,high pressure headaches,I will add I've not been without a mild headache for over 3 yrs ! The shunt has helped lessening the migraines to 12 or so a mth sometimes more and mostly I can medicate and icepack to bring them down however 1x every 1 to 3 mths there's that 1 that sends me to the ER to have them break it .... I too was told before surg. that it may not do anything at all for the headaches it was souly to save my eyesight !

I have not been able to get to see a Neuro I'm working at this time w/ the Neuro Surgeon and NO in my town,the 2 of them have taken care of me since all this started April 6,2009 ( DX'ed)

This Doc. I saw yesterday was a University doc. who I thought would be at least somewhat knowlegeable and poss. even think outside the BOX ! My NO here sent me to him for that extra ( what else can we do ) I was so floored,dumbfounded,I mean you name the emotion I felt it yesterday ! & TURN MY SHUNT OFF !!!!

I wanted to punch him ! He clearly has no clue ... 1 I not even try to shut it off , I know within 12 to 24 hrs I would be right in the ER !
2 I've tried to take myself off the head meds I know you don't want to hear this but I had gotten so overwhelmed that I just did'nt want to take them anymore WWEEELLL NOT a good idea ! It lasted about 10 hours before the migraine started up so I want do that again and it was a while back I'm good now and know for a fact !!!! I at all cost CAN NOT just stop the meds or even slowly come off of them it does NOT work for me !

So yes after my body does it's thing and then starts making more fluid all my sx return... The first few mins with this Doc seemed like it was going ok & then he started asking really stupid ?'s every thing was faxed to him he had all my records he did'nt even look at them !

oh yea he also said you can't have ih without an open pressure of READY .... 250 or higher ! OMG !!!! sorry comp gonna die on me will return !

TY ALL !!! for ur support !!!! ANGIE

seriously? you have a tube stuck in your brain and he says no headaches? thats funny. i have a VP shunt and i still take OTC meds for headache at least twice a week and percocet a couple of times a month for the bad ones. you need to get away from that doc! good luck i hope you find some relief soon.

Yeah you talk to any doc they say "you are suppose to" get any headaches after shiny placement but I think what they meant at least how I took it from my NS when he placed my VP shunt 2 weeks ago is that I won't have any more of those "laying in bed, dark room, no sounds, no smells, trying to not move, praying you will pass out from the pain" kind of migraines. So far only pain I have is where the programmable device rests under my scalp and ice fixes that for me. Get a new doc. Good luck!

What a bad day. I'm so sorry. How long do get relief when your shunt is adjusted? My LP shunt is still very new, 2 months, but I have not had a headache since I woke from surgery. The recovery has been pretty slow and very painful, but that's a whole different story. I wonder if you don't have something like Mallory, with the Chairi?

I have a non-adjustable LP shunt. It does have a valve that is pressure activated, I guess that is the best way to describe it. It regulates itself based on your physical position. It is called an H-V shunt, horizontal - vertical shunt. Here is a link for what it looks like, even though the info is for surgeons.
http://integralife.com/Neurosurgeon/Neurosurgeon-Product-Detail.aspx?Product=64&ProductName=Integra%3Csup%20class=%22prodSup%22%3E%3C/sup%3E%20Horizontal-Vertical%20(H-V)%20Lumbar%20Valve%20System&ProductLineName=Hydrocephalus%20Management&ProductLineID=5

I do hope this works for me. I had a small headache over the weekend, but had been out in the sun and on the lake watching my kids play all weekend. Something I haven't been able to do in a long while. I may have gotten dehydrated. I see my surgeon next Tuesday to check on everything. I still have a lot of side pain and started getting massage and seeing a social worker at my neurosurgeons office who helps patients deal with pain. It has helped tremendously. Pain causes so much stress in the body all kinds of things go haywire and the pain gets worse.
BTW I don't take any migraine meds either. Non of those ever worked for me.
I hope there is an answer for you soon. I feel very sad that you are having such a difficult time.

Hugs and prayers
Amy

I have had a VP shunt since December 2010, and yes, I still get headaches. Nothing like before the shunt, but they do happen. Thankfully they seem to only last hours instead of weeks and seem to be brought on by heat and/or stress. Where the shunt is, actually seems to throb when one comes on. I do hope you find a more compassionate doctor that will listen to what you are saying.

Angie,
I felt the SAME way when I had my LP shunt. My headaches were getting worse and worse and I had to have it re adjusted till it was wide open. I had a different shunt than you, Strata 2 programable LP shunt. I had mild Chiari which was the reason I had such bad headaches. The Chiari was blocking the flow from my head to my spine, so my spine was over drained while my head was under drained. The Chiari was small, in fact it technically wouldn't be called Chiari by many doctors (NS) because it was under the standard 5mm diagnosis. Mine was 3mm. The LP shunt made it worse because it caused a suction to my brain, pulling it downwards.
It sounds to me that this could be the case, but you could also just be producing too much CSF like you said.

Have your doctors considered putting in a VP shunt insead of, or in addition too your LP shunt?
Thinking of you!
Mallory :)

THANKS EVERYONE !

Magna I see my NS next tue. I feel stupid for saying this will ask him again what type of Shunt I have ...

I'll try to look it up. As far as relief I have gone as long as 5 mths although I still have low grade headaches EVERY DAY they have never gone away I've just gotten use to them.A dozen or more Migraines a mth that I icepack toget them to come down,sometimes it takes 1 hour and upwards to 6-9 on ice.I've gotten the ER visits down to 1x every 2-3 mths,Its those I can't get to break that sends me to the ER.

Mallory - I'll ask him to look into poss. Chiari however I've had so many x-rays and scans,mri's ect you would think they would have seen this if it were the case ???

The VP s was the first option however my vents there to small !
Even today still to small ! It can't be done )-;

So I can move the shunt 5 more times till it's wide open so I do have alittle time,maybe a year if i'm lucky enough ....

I just am still dumb founded with that University Doc ! A real A33 ! If you ask me,I mean he without coming out and just saying it to a point insisted I had another problem not IH ?? & IN the same sentence says oh no I'm not saying you don't have it thens turns right around and says I should not be on any meds and I could shut the shunt OFF ! WOW I was blown away ! He then says I need more test I need a MRV , REALLY they have done that it was found to be clear ! Also to chk my spine to make sure it's not clogged there,Had that done to it WAS CLEAR ! So I don't think I will waste my time with him again ! I will see both the NS and my NOP next week to see what they have to say !

Thanks again for all your support and well wishes It's been a long 3 years and want my life back !

((( HUGS ))) ANGIE