Help, please! Ongoing headaches and vision issues...

[kriserin]

The saga continues... Collin is still having severe headaches. When he had his shunt revision at the end of November, he got a programmable valve (Strata). He did great for about a month and a half and then started having headaches again. At first he just mentioned that he had a headache, then a couple of days later more headaches, and then within a few days he was back to putting his head down at school, and going down to the nurse's office to lie down, etc. We have re-programmed his shunt twice in the past three weeks. The NS has tried turning it down with the assumption that Collin was underdraining, but there was no improvement, so he turned it up with the thought that maybe he was overdraining. We were told to give it two weeks unless things got drastically worse. Two weeks will be up on friday, and we have an appointment to go back in. Things did not get drastically worse, but seem to have gotten gradually worse despite the adjustments. Collin also complains about blury vision when he is having headaches.
The NS mentioned the possibility that the headaches might be unrelated to the shunt or the arachnoid cyst. He said that we could try various medications. I am not opposed to trying different treatments, but I have a hard time believing that these headaches are unrealated. We have NO family history of migraines. Collin never had headaches before last spring, when he started having headaches and morning vomiting. The first shunt was placed in June, and we saw immediate improvement. He started having issues again in november, and then again after the revision we saw immediate improvement. I don't want to get in a cycle of trying various medications with various side effects just to try to figure out what is going on. Collin did have a CT scan 3 weeks ago, which we were told was stable, but his CT's don't usually show any change.
We go back to the NS on friday, and I want to have some idea of the direction we are going. I would love your thoughts on trying medication, and on whether or not this is related to the cyst or the shunt. I always feel like they think that Collin is exaggerating because he is not missing school. He loves school and does not want to be sent home. My DH and I have not kept him home because we figure he can either have a headache at school and still keep learning, or he can have a headache at home. His teacher has been very flexible about letting him lie down or take breaks if necessary. He is not an attention seeker, and tends to be fairly stoic. I can't see any way that he is getting rewarded for having headaches, he doesn't get any special treatment. I really don't think that he is exaggerating.

What should we push for?

TIA,
Erin

[Brandon's Mom]

Me personally, I think that trying different headache preventative medications would be a waste of time and an exercise in futility. Like you said, it is not coincidence that Collin started having headaches when he did. I would bet my bottom dollar that they ARE shunt related and both experience and knowledge I've gained from reading research papers tells me that if the headaches are an ongoing battle like Collin's are, it is time to try yet another shunt.

My daughter tried a programmable when she was having major problems with both headaches and migraines and we ended up pulling it out and going to a different type of shunt (LP in her case). Her headaches were caused by having slit ventricles which caused her to have intermittent shunt failure so her case may be different than Collins. HOWEVER, the research papers that discuss headaches in relation to Hydro clearly state that if the patient is school aged and is going down to the nurse's office, or having to lie down in class due to headaches more than a few times a month then a revision is in order.

[KathiDG]

I was thinking the same thing, Joy. I happen to have the hard copy notes from the slide presentation a well known neurosurgeon/hydro specialist did for the Hydro Assoc Convention last year. It does mention that if a student/adult has to leave school or work, or even lie down in the nurse's office more than 3 (I think) times in a week, then it's time to talk revision.

Somewhere, somehow, it doesn't seem like the little guy's valve is working the way it should. I have a Strata myself. So far I've been OK with it and haven't had to have the setting changed at all from the 1.5 my neurosurgeon set it at during surgery in August.

But, if you've tried the settings up AND down...then I'm pretty sure that valve isn't working. My neurosurgeon sent me to a neurologist who tried me on a lot of different meds for "migraines" too, before he bothered to change the shunt.

I had Imitrex (didn't work), Topamax (didn't work), Fioricet (didn't work), AND even Ultram/Tramadol (didn't work). The neurologist also tried me on muscle relaxers like Zanaflex and Skelaxin and neither worked....

I mean, it *might* work for your son, but the likelihood is that it won't because I've seen this situation before in myself BEFORE I got my programmable valve. I had a fixed-pressure valve for 20 somethin years before getting the Strata.

Hope this helps,

Kathi