?? for experience with baclofen pump

[WorkinMom]

Hi,

As you may have already read Drew had the baclofen pump implanted this past Monday and ended up having a spinal headache for oh 4 days:eek: Anytime he sat up it was horrible and continued for hours.

Well today we have started a gradual rise with his head on a good sized wedge. He is still complaining of dizziness though. The dizziness is not like that of a quick rise that diminishes in a few seconds. This lasts for much longer. Almost to the point of laying back flat but I have encouraged him to try and stay somewhat upright. But I don't want to be hurting him so I am worried. Has anyone else had this? There is no swelling on the pump area nor the back incision so I am wondering what the heck is going on. He is eating and drinking just fine.

When in the heck do you know something is wrong???

Jennifer

[NJenn]

I think you should assume something is wrong and take him in. They can do a blood patch in the ER that will help with the spinal headache--4 days is a long time to hurt like that. Caffiene also helps spinal headaches. A friend of mine who got the pump downed Mountain Dew for days.

[RathyKay]

I was thinking caffeine for a spinal headache, too. I seem to remember that from epidural discussions. I didn't get the headache, so I never tried it.

Mr. Kay has recently been having dizzy spells that go on and on. In his case, the doctor told him to watch his sodium consumption. (He's not following the nutty diet the kids and I are on.:o) Somehow, the excess sodium was affecting his ear and making the world spin. (Just in case you have more than a spinal headache going on.)

I hope you're able to help him out. Four days is a looong time.

[WorkinMom]

Believe I KNOW four days is a long time. It's been extremely rough here.
NJenn - we've been downing the Mountain Dew too. Heard it is the highest in caffeine. I just hate to call the doctor again. I've already called him 3 times and I feel like a pest. He's not got the best bedside manner at all I might add. I had read about the blood patch too but the neuro didn;t mention it. All he says is lay flat and increase fluids.
Kathy - thanks for the tip but geez to get the caffeine from the soft drinks he is getting loads of sodium I;m sure.
Today will be post-op day 6. Keeping my fingers crossed he will be back up to par.
Thanks again
Jennifer

[NJenn]

I know you know Jennifer, just saying is all...


The blood patch will relieve the headache almost instantly. I'd bypass the neuro if he's a grump. They can do it in the ER. Did he have a spinal headache after the trial? How's the spasticity relief?

[WorkinMom]

NJenn

With the bolus there was no headache. He didn't have any negative effect at all. As far as the spasticity - I really don't see a major change. Maybe very little but it's hard to tell with him still laying. He does still have the startle reflex which he is upset about.

Yesterday he was fine all day (though still laying down) around 7:30 last night I put him in the shower and soon after yet again he got dizzy and sick and the headache started. So back down he went. Called the neuro (and yes we bothered him) and he said the same thing over again - lay flat increase fluids. He did mention a bloodpatch this time though but said you run a high risk of infection and damaging the catheter. He informed me he had surgery all morning but would call today.

School starts back a week from today. He's gonna be weak as a kitten.

Jennifer

[lkelley]

i would be concerned, chelsea has had her pump for just over a year now and we havent expirienced any kind of problems like that,
i may be late chiming in you could already have the situation worked out if you do let me know how things happened and what they did.
if not i would be calling his dev. ped. or his neurosurgeon.
my 2 cents for what its worth

[moose53]

((((((Jennifer)))))),

http://chocolate-moose.p5.org.uk/MINIS/huggiebears-mini.gif

Is it possible that something is preventing the baclofen from flowing when Drew is in a certain position (like a kink in the tubes or something like that)? Have they checked to make sure that the pump is working correctly??

http://www.pubmedcentral.nih.gov/articlerender.fcgi?artid=514562

and

from:
http://www.clevelandclinic.org/health/health-info/docs/0300/0369.asp?index=4590


What are the side effects of baclofen?
Some side effects of baclofen include dizziness, drowsiness, headache, nausea and weakness. Problems with the infusion pump can cause either overdose or sudden withdrawal of baclofen.


This seems like a long time for him to be having the headache and also having to lay flat. Have you thought of bringing in another doctor for a consult/second opinion??

I hope you find out what's going on ASAP. BIG HUGS for both of you. And no more headache for Drew.

Barb

[Tigger 76]

Jennifer,

Check your pm box.