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scott54321
PostPosted: Sat Mar 24, 2012 8:17 am 
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Joined: Sat Dec 03, 2011 9:52 am
Posts: 11
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. 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.
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shaight
PostPosted: Sat Mar 24, 2012 10:04 am 
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Joined: Fri Apr 29, 2011 3:00 pm
Posts: 130
Location: NH USA
i did a quick search and there are some significant risks involved. personally, i would explore every avenue from multiple dr's before choosing this one.

Quote:
The most common side effects include:

Loose muscles
Sleepiness
Upset stomach
Nausea/vomiting
Headache
Dizziness

Pump failure may cause an overdose or underdose of intrathecal baclofen. The signs and symptoms of an overdose include:

Drowsiness
Lightheadedness
Difficulty breathing
Seizures
Loss of consciousness or coma

The signs and symptoms of an underdose include:

Increase or return of spasticity
Itching
Low blood pressure
Lightheadedness
Tingling sensation

Following are possible device complications:

The catheter or pump could move within the body or push through the skin.
The pump could stop because the battery has run out or because of component failure.
The catheter could leak, tear, kink, or become disconnected resulting in an underdose or abrupt cessation of intrathecal baclofen. An abrupt stop of intrathecal baclofen can lead to:
High fever
Altered mental status
Returned spasticity
Muscle rigidity
Death, in rare cases
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scott54321
PostPosted: Sat Mar 24, 2012 10:19 am 
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Posts: 11
Wow, no positives? I mean I can barely walk and was hoping this might be the answer.
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lyndacarol
PostPosted: Sat Mar 24, 2012 12:50 pm 
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Posts: 1698
Scott – Is it because of spasticity that you can barely walk? Somewhere I heard that baclofen could cause such muscle weakness that standing/walking was MORE difficult.

If your walking ability is affected by muscle weakness in the first place, I can't see how baclofen would help. This situation should be discussed with your physician; there must be other treatments to try. Maybe physical therapy?

If spasticity is the basic problem affecting your walking, I agree with shaight – explore every other possible avenue.
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scott54321
PostPosted: Sat Mar 24, 2012 2:36 pm 
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Physical therapy tried twice, nothing improved. I have the strength they say, the doc says the spasticity is what is causing me to have trouble walking. I don't get it either.
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HappyPoet
PostPosted: Mon Mar 26, 2012 9:06 am 
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Posts: 1281
Hi Scott,

A Baclofen pump delivers only a tiny amount of Baclofen compared to oral Baclofen, so there should be no worries about the med affecting your strength.

Going forward with having a Baclofen pump implanted will be one of the most important, life-changing decisions you will ever make, so research, research, research. Get a second opinion. Get a third opinion. Use ONLY a highly experienced, board-certified neurosurgeon if this is the route you ultimately take.

Also, join this private Yahoo group called the Pumpsters http://health.groups.yahoo.com/group/pumpsters/ and read every thread you possibly can as the pump is a whole new world you MUST learn before you agree to any surgery-do NOT rely on any surgeon nor Baclofen pump sales rep (who is an integral part of the process before, during, and after surgery) to tell you everything.

Best wishes.
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KateCW
PostPosted: Mon Apr 02, 2012 7:27 am 
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Posts: 123
I am not able to offer you any reassurances but I am in the same situation,waiting for the surgery.

I don't want the ugly thing either but I have poorly controlled spasticity and can't stay awake on the oral medications. I need o maintain enough tone to stand and assist with transfers.

I did ask the surgeon if it couldbe removed if I hated it and he assured me it could. I suspect my surgery will be inMay and will try to kep you posted.

_________________
Kathy, 49 with PPMS,full time scooter.
Married to a wonderful man, mother to a darling 9 yr old boy
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scott54321
PostPosted: Sat Apr 07, 2012 8:35 am 
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Posts: 11
HappyPoet wrote:
Hi Scott,

A Baclofen pump delivers only a tiny amount of Baclofen compared to oral Baclofen, so there should be no worries about the med affecting your strength.

Going forward with having a Baclofen pump implanted will be one of the most important, life-changing decisions you will ever make, so research, research, research. Get a second opinion. Get a third opinion. Use ONLY a highly experienced, board-certified neurosurgeon if this is the route you ultimately take.

Also, join this private Yahoo group called the Pumpsters http://health.groups.yahoo.com/group/pumpsters/ and read every thread you possibly can as the pump is a whole new world you MUST learn before you agree to any surgery-do NOT rely on any surgeon nor Baclofen pump sales rep (who is an integral part of the process before, during, and after surgery) to tell you everything.

Best wishes.


I did try to join pumpsters, but was declined. Doesn't seem to be a very caring group.
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jimmylegs
PostPosted: Sun Apr 08, 2012 5:22 am 
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Joined: Sat Mar 11, 2006 4:00 pm
Posts: 7749
hi scott can you please describe what has been tried and hasn't worked to address your spasticity? i could have some non invasive options for you to think about.

_________________
my approach: no meds so far - just balanced whole foods (partial 'paleo', much less outright elimination), science, supplements, & bloodwork
my regimen - www.thisisms.com/ftopict-2489.html
www.whfoods.com, www.nutritiondata.com
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HappyPoet
PostPosted: Mon Apr 09, 2012 5:45 am 
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So sorry, Scott. If you'd like to give me your email address (in a PM), I'd be more than happy to forward my daily Pumpster emails that contain all the posts for each day. I can forward them daily or in a batch once a week, whichever you'd prefer, so please let me know.
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tammyp
PostPosted: Wed May 09, 2012 3:27 pm 
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Posts: 4
KateCW wrote:
I am not able to offer you any reassurances but I am in the same situation,waiting for the surgery.

I don't want the ugly thing either but I have poorly controlled spasticity and can't stay awake on the oral medications. I need o maintain enough tone to stand and assist with transfers.

I did ask the surgeon if it couldbe removed if I hated it and he assured me it could. I suspect my surgery will be inMay and will try to kep you posted.


Did you get the pump surgery? I am at week 1 post surgery.

_________________
diagnosed may 1994 rrms now spms, use a cane, walker, or wheelchair depending on distance, started tysabri infusions nov 2008, baclofen pump surgery may 2012
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KateCW
PostPosted: Wed May 09, 2012 6:26 pm 
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Posts: 123
No my surgeon wants an MRI first ( in July ) and in order to attend weddings, etc that are planned my surgery will be October. Maybe I will be more used to the idea by then.

How are you feeling? What do you think so far? Unvarnished truth, please.

_________________
Kathy, 49 with PPMS,full time scooter.
Married to a wonderful man, mother to a darling 9 yr old boy
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tammyp
PostPosted: Wed May 16, 2012 5:00 pm 
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Joined: Wed May 09, 2012 3:15 pm
Posts: 4
The surgery was uneventful. Finding a good surgeon is very important. I will be getting the dressings off tomorrow...I don't have a clue what it is going to look like. I had to have the pump turned down the day after the surgery since I could not move either leg. My neurologist monitors & adjusts the pump which is fine since I see him every 4 weeks for tysabri infusions. These 2 weeks have been hard. The baclofen which reduces spasticity also causes weakness which has made it necessary for me to use a wheelchair in the house instead of the cane. I will update if you would like, as things progress.

_________________
diagnosed may 1994 rrms now spms, use a cane, walker, or wheelchair depending on distance, started tysabri infusions nov 2008, baclofen pump surgery may 2012
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KateCW
PostPosted: Tue May 29, 2012 12:04 pm 
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Posts: 123
How are you doing Tammy? I am very interested in your updates nd if the pump has been "tweaked" to allow you to stand/ walk again.

_________________
Kathy, 49 with PPMS,full time scooter.
Married to a wonderful man, mother to a darling 9 yr old boy
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tammyp
PostPosted: Wed May 30, 2012 7:06 am 
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Joined: Wed May 09, 2012 3:15 pm
Posts: 4
I will see the ms nurse tomorrow for a tysabri infusion. I have many concerns that need to be discussed. I still have not reached my baseline before the surgery. My legs have begun to be stiff again as well as weak. I am using the walker most of the day then return to the wheelchair around 3P. By walking I mean I slide my feet. Before the pump, I could at least pick up my right leg, but things were getting worse so I opted for the pump.

_________________
diagnosed may 1994 rrms now spms, use a cane, walker, or wheelchair depending on distance, started tysabri infusions nov 2008, baclofen pump surgery may 2012
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