9 replies to this topic

[MagiCiSee]

I have a c-5 c-6 incomplete injury n I been really looking into getting this bacloflen pump in me for lots of reason its to the point were these muscle spasms are hurting n me n my gf is tired of me kicking her while i sleep. ANY ADVIcE

[wiggy]

I'll probably get flamed for saying anything, but here goes:

My two major concerns are what happens when it runs out of meds and what happens when it runs out of batteries.

I went through the trial and everything, it worked really well and all but i'm not putting that big chunk of metal in my body it's just asking for trouble.

I simply changed the times i was taking my anti-spasmodics during the day and most of my spacticity and spasm issues have gone away. Turns out I didn't need someone opening me up and putting an 18oz peice of 20th century tech in my chest.

[MagiCiSee]

I like your honest and i am never of fan of surgery i just want to get all my facts straight before i do anything im scheduled for the trail next week.

[Apparelyzed]

Hi,

I've had a baclofen pump since 1992.

If you get the Medtronic programmable pump, the battery life is 5 to 7 years, then the pump needs replacing.

I have a gas powered pump, which has no batteries, and never needs replacing except in cases of mechanical failure.

The pump will be refilled every 90 days, depending on how the pump is set up. You will be given a refill date when it's implanted and refilled, so running out of baclofen isn't normally a problem, in fact, to my memory, my pump has never run out.

The issues with the pump which you can have, include pump failure (rare), catheter displacement, and kinking or disconnection of the tubing from the pump.

Another, usually post operative issue is a CSF leak, where the tissue around the tubing entering the spine doesn't seal, resulting in CSF leaking. This is usually easy to remedy, by injecting blood around the site, which clots and seals the leak. This seal is called a Blood Patch.

Problems I've had in the past, are CSF leak, disconnection of tubing, and battery dying after 5 years.

Even though there are potential problems, the benefits of the pump for me far outweigh any side effects.

Severe spasticity can make your life a living hell, in my case, it has a severe impact on my quality of life, so even if the pump goes faulty, and it needs replacing, that's only a couple of months out of my life, in exchange for years of relief from spasticity.

In my 19 years of having a pump, I've had a Cordis manual pump ('92), and three Medtronic pumps ('95-'05). I now have a Codman gas powered pump.

When a pump is first fitted, it's usually a Medtronic, as it can be programmed to change your dosage, without emptying the pump. Once your dosage has stabalised, and you have a dosage you are comfortable with, you could change to the Codman pump when the Medtronic needs replacing, which needs less maintanance.

One thing which will be an issue for yourself, is that you are incomplete. The use of a baclofen pump in incomplete injuries may mean your remaining function is weakened, below your level of injury. Dosages can be fine tuned so that you may have a little spasticity, which should help stop the baclofen interfering with your remaining function.

It may take up to 12 months for you to find the optimal dosage you can live with, as your body does get used to the baclofen, or, you may find it's too strong, and you want the dosage reducing.

If the baclofen is too strong, it could also have an effect on erections, so again, this is an issue with fine tuning your dosage.

Even though I've had problems with my pump, and my current pump is throwing a wobbly at the moment, I have no doubt that my quality of life would be vastly reduced by the severe spasticity I have had I not had the pump, as I am reminded when it has stopped working in the past.

Regards

Simon.

[megatrig]

Really reallllllllllllllllly way up the pros and cons!

I didn't have one or the need for one for 18 years. I useed oral Baclofen and Diazepam. Slowly as spasm increased the drugs and more drugs didn't work.

Muscle spasm took over my life completely and no matter how many drugs I took I got nowhere!

so sat here the pump is getting there regards drug delivery amount.

My bowel regime is ruined as baclofen can affect this. Along with bladder too!

The pump hurts me as it pushes through my skin.

I'm struggling with being convinced at the moment in honesty. Do I have any other options?? Sadly probably no!

[MagiCiSee]

Well heres y i wanna get it im a walking quad i am self bladder n bowl n i can hold it for how ever long i want and for sexual function its a hit. so i think i can deal with muscle spasms if thr baclofen pumps takes this all away

[wiggy]

MagiCiSee, on 27 January 2011 - 05:18 PM, said:

Well heres y i wanna get it im a walking quad i am self bladder n bowl n i can hold it for how ever long i want and for sexual function its a hit. so i think i can deal with muscle spasms if thr baclofen pumps takes this all away

dang man, count your blessings. you've got too much stuff that works to eff it all up with some ancient peice of tech.

[MagiCiSee]

wiggy, on 27 January 2011 - 08:37 PM, said:

MagiCiSee, on 27 January 2011 - 05:18 PM, said:

Well heres y i wanna get it im a walking quad i am self bladder n bowl n i can hold it for how ever long i want and for sexual function its a hit. so i think i can deal with muscle spasms if thr baclofen pumps takes this all away

dang man, count your blessings. you've got too much stuff that works to eff it all up with some ancient peice of tech.

but do u think the trial can mess this up

[wiggy]

MagiCiSee, on 27 January 2011 - 08:38 PM, said:

wiggy, on 27 January 2011 - 08:37 PM, said:

MagiCiSee, on 27 January 2011 - 05:18 PM, said:

Well heres y i wanna get it im a walking quad i am self bladder n bowl n i can hold it for how ever long i want and for sexual function its a hit. so i think i can deal with muscle spasms if thr baclofen pumps takes this all away

dang man, count your blessings. you've got too much stuff that works to eff it all up with some ancient peice of tech.

but do u think the trial can mess this up

IMHO i don't think so. the trial worked for about 36 hours in my body, then all effects had worn off. The trial will be a good time for you to see what, if any, of your abilities it takes away.

[MagiCiSee]

wiggy, on 27 January 2011 - 09:38 PM, said:

MagiCiSee, on 27 January 2011 - 08:38 PM, said:

wiggy, on 27 January 2011 - 08:37 PM, said:

MagiCiSee, on 27 January 2011 - 05:18 PM, said:

Well heres y i wanna get it im a walking quad i am self bladder n bowl n i can hold it for how ever long i want and for sexual function its a hit. so i think i can deal with muscle spasms if thr baclofen pumps takes this all away

dang man, count your blessings. you've got too much stuff that works to eff it all up with some ancient peice of tech.

but do u think the trial can mess this up

IMHO i don't think so. the trial worked for about 36 hours in my body, then all effects had worn off. The trial will be a good time for you to see what, if any, of your abilities it takes away.

Thank you so much u all have been very helpfull