My doctor wants me to get a baclofen pump and I'm scared

[scott54321]

Hi again everyone. The doc wants me to get the baclofen pump. I have tried everything else and nothing has worked. He then put me on Zanaflex which did nothing, and baclofen pills made me feel sick. I've tried physical therapy three times, nothing improved. I have the strength they say, the doc says the spasticity is what is causing me to have trouble walking. Is weakness in the legs actually spasticity? Makes no sense to me.



What scares me about the baclofen pump is:

Will baclofen from the pump make me sick like the oral did?

The pump after insertion looks hideous, as does the scarring.

Every few years, it has to be removed for the battery.

Is sleeping a nightmare with this pump? It looks so protruding that you wouldn't be able to roll over on it.

Am I stuck with this for life?



Any help you could give me in making this decision would be greatly appreciated.

[hunterd]

Hi again everyone. The doc wants me to get the baclofen pump. I have tried everything else and nothing has worked. He then put me on Zanaflex which did nothing, and baclofen pills made me feel sick. I've tried physical therapy three times, nothing improved. I have the strength they say, the doc says the spasticity is what is causing me to have trouble walking. Is weakness in the legs actually spasticity? Makes no sense to me.



What scares me about the baclofen pump is:

Will baclofen from the pump make me sick like the oral did?

The pump after insertion looks hideous, as does the scarring.

Every few years, it has to be removed for the battery.

Is sleeping a nightmare with this pump? It looks so protruding that you wouldn't be able to roll over on it.

Am I stuck with this for life?



Any help you could give me in making this decision would be greatly appreciated.

you`re not 'stuck' with the pump. they can take it out as easily as it was put in.

i`ve never had issues sleeping with the pump(i sleep on my belly side too).

it does need a new battery every so often. i think it`s every 6 years, but i very well may be wrong.

i do still have scars, but they are faint to look at.

the ammount of medication you`ll need after the pump is minimal compared to oral meds.

the decision to get, or not get the pump is ultimately yours. i am glad i got one though!
good luck

[rdmc]

The pump was the best thing I've done for myself since I've had MS.

First, you get to do a trial, so you'll know if it makes you sick. I imagine it won't. They use 1/1000 of the med they use orally, and it is delivered directly to the spine...doesn't go through your entire system, so minimal side effects.

Oral baclofen did nothing for me. I was still able to walk, but couldn't move my legs much. I went to my PT and asked if there was anything else he could do for me and what did he think about the pump. He said I had zilch range of motion, so at that point, nothing he could do.

The pump trial went well. It doesn't stick out that much (well I have some "padding" so maybe that's the reason mine doesn't) You do get a couple scars, one on your backbone, one on your belly...and I'll be honest they look like pretty good sized scars.

Never had an issue sleeping, most of the time I don't know it's there.

As far as battery replacement, yep, you do need that every 6 or 7 years, but I'd go through a surgery a year, just to get the relief I get from the pump.

Get the trial and test drive the med.

[Sara Angela]

I have two friends with them. It has been good for them!

Sara

[Kalliope]

I did the trial and things worked out well, had it put in and then months later had it taken out. Mine was a pain/spasticity pump. I woke with my pump being on the left side, more toward my back. I wasn't able to sleep on my back or even lean back on a chair without feeling it. I think I could of gotten used to those things if I would have gotten some relief from my pain and spasticity. The scar was no big deal, it is a thin white line. It was actually smaller and thinner than I thougth it would be. As for it sticking out and looking hideous-if you were looking for it, you could see the outline, if you ran your hand over it you could feel it, but as far as it noticably sticking out- mine didn't. I knew that the battery would have to be changed every so many years, but for the chance of years of relief I felt like screaming "sign me up!"

I had high hopes for the pump. I know people who have one and it literally changed their lives for the better. By the time I had it removed, I was on as much medicines as I was before the installation and was tending to new and/or worsening problems. I am glad I tried it. Not having to remember to take meds, being able to take less baclofen and have better control over spasticity made me feel like it was worth trying.

I don't tell you these things to scare you more. Mainly to say it doesn't work for everyone and it can be removed if it doesn't help, but for the ones that it does help, from all I heard it makes things easier. Having it removed wasn't to bad. Just a matter of healing up again and getting my meds right. No matter what you decide, I hope you feel better.

[kmallory1]

I've had my baclofen pump for 3 years. It works great on spasticity and the pain related to spasticity.

The scars are there, but they aren't bad and I wasn't wearing a bikini anyway. It sticks out less than I thought it would. I had the idea it would be right under the skin and you would be able to see the outline. It's under a layer of fat which smooths it out.

Mine is on the right side of my belly just below my waist. I can sleep on my right side just fine, never even feel the pump. In fact, I pretty much forget it's there at all.

Refills are quick and pretty painless, as there is not much feeling in the skin right on top of the pump.


Check You-tube. There are some videos of a guy going through the whole process. You can see what it looks like.

It's given me more relief than anything else I've done. Oral baclofen did nothing for me, at 80 mg a day. Zanaflex put me right to sleep.

[bluegiraffe]

I too have the baclofen pump (had it implanted just over a year ago) with very positive results. I stopped taking any oral medication for pain or spasticity right away.

The pro is it took care of my extreme pain and spasticity. The tradeoff for me is it causes some weakness in other areas (everyone is different and at different dosages based on your situation).

I am very happy I got the pump, it didn't matter to me about the scar or anything as I was in the need for some type of relief that oral mediciation did not help me with and caused side effects.

Due to my size I got the smaller size pump, the initial drawback to the smaller pump is that it required more frequent refills - but my doctor refills with a higher concentration that only needs a refill after 6-7 months (just like the larger pump requires).

I do not notice the pump nor does it affect how I sleep. The scars are faint too.

I am a fan of the pump !

[scott54321]

OK, embarrassed as I am to ask the next question, here it goes. When the wife and I are being intimate, specifically the missionary position, it is very hard for me in general. The hardest part for me are the thrusts. I have been dealing with this for many years. Is there a chance that the pump might help with this? Thanks for reading this EXTREMELY embarrassing reply!

[kebsa]

i have one of these pumps but mine is used for pain relief not baclofen but it is still the medtronic synchromed system that is used to give either intrathecal (into the spinal fluid) morphine and clonidine in my case or baclofen for others

i had my 1st in 2000 and now i am on number 3, number 2 was removed due to post op infection and i had to use alternate medications for a few months to be safe that there was no risk of infection- a tough few months as the pump had been so very effective at very low doses and i had no noticeable side effects where as with the oral meds i required very high doses, still had less than optimal pain relief and had nausea unsteadiness etc as side effects from the oral versions of the same drugs- i was so relieved when i could have number 3 placed

the modern batteries should last around 10 yrs at least and then it is relatively minor surgery to have just the pump itself replaced, it was done as a day patient and i would say the pain is negligle. when they are placing the spinal catheter there is a small wound to the lower back and 2 or 3 small stab wounds so they can thread the tube under the skin from the back to the pump but basically i was able to get back to my usual daily activities the next day- the scarring for me is not bad infact is barely noticable but that depends a little on a persons tendancy to scar

as for side effects, certainly with pain meds and i would assume baclofen would be the same sort of case, because the medication goes straight to the site of action and does not have to go through the liver first like oral meds, it means that small doses can be used with far great effect. with my morphine it is 1/100th the dose

as for spasticity and walking for some it is an aid to help walk but for to
others it causes pain and you have to fight to get past the spasticity to walk, taking more effort and causing exhaustion. i have some spasticity in my remaining leg but it is not painful, i do have painful bladder and low back spasm but my neuro and pain Docs think that for me, some degree of spasm in my leg is what allows me to still stand and transfer, if they give me enough antispasmodics to get rid og the painful spasms it would also reduce the control of my knee. Its the same for some disabled with conditions like cerebral palsy, depending on the individual, spasms can be all negative or can give a small amount of control to aide mobility- it sounds like for you though it is far more negative

there is more than one company making pumps, but medtronic is one that i know has a lot of patient info on their web site, check it out and it might help you a bit

[rdmc]

OK, embarrassed as I am to ask the next question, here it goes. When the wife and I are being intimate, specifically the missionary position, it is very hard for me in general. The hardest part for me are the thrusts. I have been dealing with this for many years. Is there a chance that the pump might help with this? Thanks for reading this EXTREMELY embarrassing reply!

I'm not a man, so can't answer with any authority, but will say that the pump provided much more movement in my legs, and range of motion. Don't think it provided more strength, or stamina when walking. It did ease pain from spasticity. Maybe a guy will chime in, but didn't want you to think your question was too embarrassing as you put it. Nothing's too embarrassing to ask on this board. Unfortunately the disease causes us to deal with embarrassing physical problems.

[scott54321]

I'm not a man, so can't answer with any authority, but will say that the pump provided much more movement in my legs, and range of motion. Don't think it provided more strength, or stamina when walking. It did ease pain from spasticity. Maybe a guy will chime in, but didn't want you to think your question was too embarrassing as you put it. Nothing's too embarrassing to ask on this board. Unfortunately the disease causes us to deal with embarrassing physical problems.

Thanks so much guys. The doc says I don't have MS, although at times I truly believed that's definitely what I had. He says I have spastic paraplegia. I meet with the neuro surgeon tomorrow. I pray this is finally the solution that I have been looking for, for over fifteen years.

[StarFlame]

When in doubt, get a 2nd opinion.

[Redwings]

Thanks so much guys. The doc says I don't have MS, although at times I truly believed that's definitely what I had. He says I have spastic paraplegia. I meet with the neuro surgeon tomorrow. I pray this is finally the solution that I have been looking for, for over fifteen years.

Hi scott:
Now that you mention that you've been at this for over 15 years, it brings up more questions than answers. How many neurologists have you seen? What kinds of testing have you had? How many different neurologists told you you don't have MS? How many different neurologists confirmed spastic paraplegia?

What kind of spastic paraplegia do you have: ideopathic progressive spastic paraparesis or hereditary spastic paraplegia? Have you done much research about the different forms?

Have you been to forums for people with spastic paraparesis/paraplegia (e.g., at the Spastic Paraplegia Foundation http://www.sp-foundation.org/discussion-forums.html) to ask other folks with spastic paraplegia about their experiences with a baclofen pump?

It sounds like part of your uncertainty about getting a baclofen pump comes from being uncertain about your diagnosis. Do you think that if you had more confidence in your diagnosis and knew more about it, you might feel more confident in making a decision about a pump?

[scott54321]

Hi scott:
Now that you mention that you've been at this for over 15 years, it brings up more questions than answers. How many neurologists have you seen? What kinds of testing have you had? How many different neurologists told you you don't have MS? How many different neurologists confirmed spastic paraplegia?

What kind of spastic paraplegia do you have: ideopathic progressive spastic paraparesis or hereditary spastic paraplegia? Have you done much research about the different forms?

Have you been to forums for people with spastic paraparesis/paraplegia (e.g., at the Spastic Paraplegia Foundation http://www.sp-foundation.org/discussion-forums.html) to ask other folks with spastic paraplegia about their experiences with a baclofen pump?

It sounds like part of your uncertainty about getting a baclofen pump comes from being uncertain about your diagnosis. Do you think that if you had more confidence in your diagnosis and knew more about it, you might feel more confident in making a decision about a pump?

1. - 4

2. - 4

3. - 2

4. - ideopathic spastic paraparesis

5. - yes

6. - yes, that's why I'm here.....

[nappy]

Over all, a YES, on the pump.

I have had my pump for almost three years. I had been on over the max of baclofen at around 120 when the max is 80mgs daily- and was still having trouble.

I would get weak in areas that didn't need loosened up, arms and neck, and the relief I did get in my hips and legs would wax and wane with the oral baclofen.

I also took Zanaflex- at bedtime- it would knock me out almost instantly. I think it just made me sleep through the pain and spasms.

I also did the Botox shots for a year and a half with only a little improvement. It would take a while to help, then wear off until it was time to wait for the next round of injections.

I did get the bigger pump considering how much baclofen the dr. thought I would need. But with the higher concentration I should be able to go longer between refills. I am going to ask for the smaller pump when I have the battery changed in this one- whenever that will be. You have to have it drained and refilled every 6 months regardless.

The only issues I have had are when I bump it or when I bend over without thinking about it. I am very short waisted and need to remember to "tuck it" when I bend. At times I have banged it on the counter- it pinches so you learn not to do that. At first the incisions were right where my underwear and pants would ride but not that they are healed it is not an issue.

The only other issue I have is now at times I over do it. I have shoveled snow or helped throw hay and have kind of stretched too far and felt the tubing pull. But considering that the pump has allowed me to do those things again it is kind of a good reminder.

I even tried water skiing again last summer. It wasn't pretty at all and my balance was comical, but I was able to bend enough to get my skis on in the water. After a tiny bit of skiing, I let go. I needed to float around a bit to recover and even then my husband had to haul be into the boat practically. Really paid for it for a few day- but obviously still very excited that I did it!

Good luck with your decision.