Baclofen pump FAQ - Page 29

Slara · 06-16-2012, 09:27 AM

Quote:

Myths/Facts

MYTH: A test dose of baclofen into the spinal fluid is a good test of how a person’s spasticity would be changed if a baclofen pump were inserted .

FACT: The test dose is given to answer one question: does it relieve spasticity. The test dose often produces more relaxation than would be desired day after day.
MYTH: A baclofen pump improves spasticity in the legs but not in the arms.

FACT: The amount of spasticity reduction in the arms depends on where the catheter is positioned in the spinal fluid. When baclofen was first given, catheters were placed low (T10-12) and improved mainly the legs; now, catheters are positioned higher (e.g., T 1-2) and arm spasticity is improved much more .

Follow-up
The pump needs to be refilled every two to six months, depending on the pump size, concentration and dose. Refills are done in the office (or occasionally by visiting crna nurses) using a syringe and needle and take approximately fifteen minutes to complete. At that time, baclofen doses are adjusted depending on the effects that are being seen. Doses typically increase slowly during the first year, then remain at that level for years thereafter. The battery in the pump lasts seven to eight years at which time the pump needs to be replaced. Baclofen has been used for more than fifteen years with no long-term complications being reported.

Futher Reading: http://www.neurosurgery.pitt.edu/ped...pasticity.html

SCI-Nurse · 06-16-2012, 11:01 AM

Not true- the test dose is a test dose ( but it is a bolus- injection of 50 mcg to 100 mcg so you can see the effect fast. Once the pump is implanted it is a basal rate or hourly to begin with and the pump is titrated slowly upwards 10-30% at a time. You do NOT want to overdose the person- it is not just your legs- the medicine circulates to the brain and usually doesn't affect much above the lower extremities but if it was an overdose then you could have serious side effects. The titration can be done every other day at the earliest to see the effect of the dose.Then once the desired effect is there you stop and/or you can tweak periodically. There is also a Flex confusion that you can individualize it ex: increase during night or whatever hours are needed or give a bolus- amount at certain times to help when needed and then have the basal or hourly rate also.
Every person is different and pump settings are different and you have to deal with people who know what they are doing or you will get overdosed and go into a coma or the catheter won't be put in correctly or will break loose or leak. If there was a pump malfunction- there is a history or LOG that can be read. An investigation is done by theprovider and also Medtronic or pump company. If this wasn't done then it was the providers fault. You should ask for a read out of your settings and also a log if there were every any complications. Compare the settings and dosage and see what happened. The company will take the pump and test it also!
Not to say the pump can't malfunction but.... operator or implantation error or post op issues- i.e. moving. bending, lifting etc.. when you should NOT bend forward, liftor twist sideways for 6-8 weeks- if you do the possibility of the catheter disloging etc is there. Then you wil get a free flow of medicine. of course this won't show up on the pump log. Most just implant send home and don't give specific enough instructions.

CWO

MSspouse · 07-23-2012, 10:55 PM

What is the latest on Medicare coverage? My wife finally got the referrals to see a surgeon and we had the visit, but all we heard was a vague $8K copay with no details in a phone message. Nothing about continuing copays for refills. We don't even know if it will work. I'd consider the trial just to know if it's even worth considering. We wasted a $600 copay on botox to find out that was worthless. I tried calling back to get a detailed statement but all I got was runaround. I don't really think they want to do it. I'd look for another surgeon but I don't want to waste time if they are going to tell us the same.

zevobru · 08-19-2012, 06:00 PM

My son had problems with Baclofen. We still don't know the long-term impact. Many physicial therapists we talked with say there are many others who have had problems with the drug.

SCI-Nurse · 08-21-2012, 09:55 PM

It is an approved procedure and your INSURANCE COMPANY OR MEDICARE WILL PAY. Again depends on your cpverage. Who is your insurance case manager? You may need to have letters or justification written.You can contct medtronic and they can give you providers in your area that perform the trials/implant and manage itb pumps.And know about the funding issues and rules. www.medtronic.com
CWO
CWO

MSspouse · 09-01-2012, 10:22 PM

Quote:

Originally Posted by SCI-Nurse

...Again depends on your cpverage. Who is your insurance case manager? ...

As stated, just straight Medicare part A & B. I've never heard of a case manager for Medicare. Probably not a bad idea to go straight to Medtronic but I would think there is a standard cost allowed for this procedure from which the Medicare copay/deductible can be calculated.

sjean423 · 09-02-2012, 11:04 AM

Quote:

Originally Posted by MSspouse

I'd consider the trial just to know if it's even worth considering.

I don't think you could even get a pump put in without the trial, so that is the place to start anyway. See if they would cover that part, and go on from there if it is effective.

zevobru · 09-15-2012, 09:30 AM

Before having a baclofen pump put in, I would suggest reviewing the potential side-effects of baclofen with the doctor. My son had many problems which his psychiatrist attributed to baclofen. Also talk with your physical therapist and ask if any of their patients had side-effects. Then you can balance the benefit and risks.

quad79 · 09-26-2012, 06:38 PM

I just got my pump a few months ago & so far life is so much better! No interference with driving, sleeping, getting dressed...the list goes on.

I was taking 90mg oral & it wasn't getting many anywhere, just feeding my bodies addiction to it.

I was very surprised that the process took so long. Mr dr. sends every patient to the psychologist for testing. The do this to make sure you have realistic expectation, aren't bi-polar or schitzophrenic, or have a possible drug habit. Then there was the trial. Then the surgery. To my amazement, I was awake the entire 2hrs. under general anesthesia & a spinal block. I went home just hours later too!

It's alot to consider but if you're @ the end of your rope like I was, go for it.

MSspouse · 10-10-2012, 11:48 PM

So I finally called Medtronic but wasn't able to get any average cost data. After pressing the customer service rep for a way to at least research the drug refill on insurance formularies, I did learn that the form of the drug is called Intrathecal. Should have guessed that, but then again the consumer should not have to do this kind of research to get an estimate. Ironically, a few web searches including the term Intrathecal lead me to the professional section of the Medtronic web site where I found links to coding and 2012 Medicare national average prices.
http://professional.medtronic.com/pt...m#.UHY7ixx7NZ0
The prices vary greatly depending on where it is performed. Even a trial could as much as $2000 in Medicare deductible/copay if performed inpatient. We will definitely need to find Surgeon willing to do a trial outpatient or a surgery center.

09-26-2012, 06:38 PM	#289
quad79 Senior Member Join Date: Jul 2007 Posts: 3,843	I just got my pump a few months ago & so far life is so much better! No interference with driving, sleeping, getting dressed...the list goes on. I was taking 90mg oral & it wasn't getting many anywhere, just feeding my bodies addiction to it. I was very surprised that the process took so long. Mr dr. sends every patient to the psychologist for testing. The do this to make sure you have realistic expectation, aren't bi-polar or schitzophrenic, or have a possible drug habit. Then there was the trial. Then the surgery. To my amazement, I was awake the entire 2hrs. under general anesthesia & a spinal block. I went home just hours later too! It's alot to consider but if you're @ the end of your rope like I was, go for it. __________________ ______________________________________ Proud owner of an AR15

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06-16-2012, 11:01 AM	#282
SCI-Nurse Moderator Join Date: Jul 2001 Location: USA Posts: 41,361	Not true- the test dose is a test dose ( but it is a bolus- injection of 50 mcg to 100 mcg so you can see the effect fast. Once the pump is implanted it is a basal rate or hourly to begin with and the pump is titrated slowly upwards 10-30% at a time. You do NOT want to overdose the person- it is not just your legs- the medicine circulates to the brain and usually doesn't affect much above the lower extremities but if it was an overdose then you could have serious side effects. The titration can be done every other day at the earliest to see the effect of the dose.Then once the desired effect is there you stop and/or you can tweak periodically. There is also a Flex confusion that you can individualize it ex: increase during night or whatever hours are needed or give a bolus- amount at certain times to help when needed and then have the basal or hourly rate also. Every person is different and pump settings are different and you have to deal with people who know what they are doing or you will get overdosed and go into a coma or the catheter won't be put in correctly or will break loose or leak. If there was a pump malfunction- there is a history or LOG that can be read. An investigation is done by theprovider and also Medtronic or pump company. If this wasn't done then it was the providers fault. You should ask for a read out of your settings and also a log if there were every any complications. Compare the settings and dosage and see what happened. The company will take the pump and test it also! Not to say the pump can't malfunction but.... operator or implantation error or post op issues- i.e. moving. bending, lifting etc.. when you should NOT bend forward, liftor twist sideways for 6-8 weeks- if you do the possibility of the catheter disloging etc is there. Then you wil get a free flow of medicine. of course this won't show up on the pump log. Most just implant send home and don't give specific enough instructions. CWO

07-23-2012, 10:55 PM	#283
MSspouse Senior Member Join Date: Jul 2011 Posts: 341	What is the latest on Medicare coverage? My wife finally got the referrals to see a surgeon and we had the visit, but all we heard was a vague $8K copay with no details in a phone message. Nothing about continuing copays for refills. We don't even know if it will work. I'd consider the trial just to know if it's even worth considering. We wasted a $600 copay on botox to find out that was worthless. I tried calling back to get a detailed statement but all I got was runaround. I don't really think they want to do it. I'd look for another surgeon but I don't want to waste time if they are going to tell us the same.

08-19-2012, 06:00 PM	#284
zevobru Member Join Date: Dec 2011 Posts: 91	My son had problems with Baclofen. We still don't know the long-term impact. Many physicial therapists we talked with say there are many others who have had problems with the drug.

08-21-2012, 09:55 PM	#285
SCI-Nurse Moderator Join Date: Jul 2001 Location: USA Posts: 41,361	It is an approved procedure and your INSURANCE COMPANY OR MEDICARE WILL PAY. Again depends on your cpverage. Who is your insurance case manager? You may need to have letters or justification written.You can contct medtronic and they can give you providers in your area that perform the trials/implant and manage itb pumps.And know about the funding issues and rules. www.medtronic.com CWO CWO

09-15-2012, 09:30 AM	#288
zevobru Member Join Date: Dec 2011 Posts: 91	Before having a baclofen pump put in, I would suggest reviewing the potential side-effects of baclofen with the doctor. My son had many problems which his psychiatrist attributed to baclofen. Also talk with your physical therapist and ask if any of their patients had side-effects. Then you can balance the benefit and risks.

10-10-2012, 11:48 PM	#290
MSspouse Senior Member Join Date: Jul 2011 Posts: 341	So I finally called Medtronic but wasn't able to get any average cost data. After pressing the customer service rep for a way to at least research the drug refill on insurance formularies, I did learn that the form of the drug is called Intrathecal. Should have guessed that, but then again the consumer should not have to do this kind of research to get an estimate. Ironically, a few web searches including the term Intrathecal lead me to the professional section of the Medtronic web site where I found links to coding and 2012 Medicare national average prices. http://professional.medtronic.com/pt...m#.UHY7ixx7NZ0 The prices vary greatly depending on where it is performed. Even a trial could as much as $2000 in Medicare deductible/copay if performed inpatient. We will definitely need to find Surgeon willing to do a trial outpatient or a surgery center.