ITB Baclofen @3000 mcg daily w/ no relief

[armymech69]

Hello,
Im new on here and have been reading everyones posts on ITB and pain. My problem is I have a pump and I get 3000 mcg daily of baclofen and up to 11 mg of diladid daily and still having more spasms and pain than ever. I have gotten the flow study w/ dye and CT scan and the docs say everything OK. Im on the 1000 mcg baclofen now but tried the 2ooo and it got worse so went back to 1000 concentrate. I dont know if it was the volume of the drug I was getting or what but the 2000 which is less volume made spasms worse. Has anyone heard of getting it put in at base of skull or cerebral area where the SCF is made. My Dr said my injury site has to much scar tissue to put catheter any higher in cord. My spasms tighten my back and abs and messes with my bm and bladder. Any ideas appreciated

[arndog]

Skeptic that I am, is it possible that your doc is incorrect and that the pump is not functioning properly? Did he do a dye study? Is there a crack in the delivery system that is leaking the meds not into the proper place?

[armymech69]

Yes there was a dye study with a CT scan 10 min. after that. I swear there is some thing wrong. Here is my story to bring you to date.
sept 08-injury
oct 09-placement of pump
feb 10-revision and moved tube down to t-10/11
all well for about 1 1/2 months
after that I would go back every 2-3 weeks and get turned up for spasticity/pain
july 11-another revision but only found no teather where it goes in my spine and replaced tube going in spine
nov 11- another flow study with dye and CT, nothing wrong seen
present-still having spasms/pain at 3000 mcg baclofen and 11 mg diladid daily.

[zevobru]

my son has a Medronic Synchro Med II pump. He has many of the same problems. We found out the pump was recalled due to a problem with the battery, but no one told us. Medtonics is down-plying the seriousness of the problem. But check and see if it is one of these recalled pumps.

[armymech69]

CHecked with medtronic and it is one that is in the recall but they said its not really a recall and that .03% actually had a problem and the alarm would sound if there was a failure. Thanks and keep the suggestions coming.

[zevobru]

my son also has a recalled pump. He would up in the hospital, first with signs of baclofen withdarwal...rigid as a board, high fever, then went into a coma...signs of baclofen overdose. The academic hospital did $50,000 in tests...couldn't not find anything....but they never tested the pump. Medtronics is saying the same thing...the pump is not the problem...but I would guess its your pump with a yet unidentified issue.

[avictoria]

dilaudid has a short half-life and when it wears off you might get terrific spasms. do the spasms go away after you take the dilaudid? you might need to check with your doc about the dilaudid dose or a longer acting pain med? Even slight fluctuations in opiate levels can increase spasms

hope you get it figured out

[thehipcrip]

@avictoria, she's receiving the dilaudid through continuous infusion intrathecally, just like the baclofen.

@OP, I don't understand why/how the concentration of the baclofen would have any affect at all on spasticity. Using the more concentrated formula [2000 ml of baclofen per cc of saline] simply enables you to go twice as long between refills than the lower concentration.

[armymech69]

Wow! Sorry for your son and them not finding anything, I hope everything got better. I am due for pump replacement in a few months anyways so we will see then if it is in the pump.
On the 1000 or 2000 my pump manager cant believe it makes a difference but I can definetly feel a difference. We have tried it about 3 times and I always have to go back to 1000.

[Lazlo]

Not much to add here except that I'm in the same boat. Two catheter studies, one catheter revision, MRI, countless dose adjustments, everything looks normal but I've got more spasms than ever. The back spasms are the real killer because I can still feel my back and they're very painful. If the pump just got rid of those spasms I'd be happy with it.

I've never heard of someone getting 3000mcg/day before, that's really high. At around 900 I was basically going in and out of mini-comas and had to have it cut back. I'm at about 650 now and inching back up to try to address those back and abs spasms but no luck so far, and I can't go above 850. Overall I'm pretty unhappy with this whole bac pump experience.

Here's the thing though. My initial test dose was very effective. After over a year of pestering my docs they agreed to repeat the test dose to see if it was still effective. Unfortunately, this second test dose, nearly three years after the first, was completely ineffective. In fact the PT said I seemed to get more spasms after the dose.

So is this a case of becoming resistant to the drug over time? The docs say they have no idea, there are no more tests they can run, essentially they have no plan for me at all. So all I can do is push it back up near the comatose level again and hope for some relief from the most painful of the spasms.

It's interesting what you say about using the 1000mcg/mL solution. All I can think is that maybe the additional saline helps transport the drug further from the catheter tip. But if you're using 3000mcg/day with a 40mL pump filled with 1000mcg/mL solution, does that mean you're getting a refill every 13 days?

[zevobru]

pump

Very weird...do you have a Medtronic Synchro Med II pump? This is the one my son has and he has had problems and need for frequent adjustments ever since it was installed. He was up to 360 at one time. If it is that pump, it has been recalled. You can put the serial number in on the Medtronic website to see if your specific pump is part of the recall.

[fromnwmont]

Is the manufacture the same for both doses of meds? I have found a very real difference between metha dose and methadone and between different brands of hydrocodone same dosage but different bases apparently do not work the same for everyone.. I assumed it was just me but my pharm asked me if i was noticing any difference after i answered the affirmative he told me several other patients had mentioned it...

[maggie~mae]

my son has a Medronic Synchro Med II pump. He has many of the same problems. We found out the pump was recalled due to a problem with the battery, but no one told us. Medtonics is down-plying the seriousness of the problem. But check and see if it is one of these recalled pumps.

same here. medtronic NEVER notified me of the recall. i only found out because i googled the synchromed II once i started having issues with it. i'm having a revision done next wk.

[zevobru]

It seems like we may not be getting the straight story from Medronics. They are telling the doctors that the pump failure is so remote (3 in 1,000) that the pump can not be the problem. So the doctors never have the pump checked. So how do we know that all the pumps that are not being checked are not problematic. As for the alarm, wghat powers the alarm to sound when the battery fails. And what is the alarm is defective. When we started asking these questions, our doctor flat out said "it's not the pump". She made it clear that she is the doctor and the conversation about the pump was over.

[armymech69]

Update for you all

I went in and got the pump replaced and the DR did a revision but could not get the catheter above my injury site due to scar tissue and hardware he said. Still no relief and I think it is actually worse than before. SO here I sit wondering what is going to happen next. I go in on the 16th and find out.

Yes i do get refilled every 13 days and the diladid life span is about 30 days my NP told me. I never get mini comas and it is actually hard to sleep with my back hurting. If anyone has a solution or a question dont hesitate please.