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  #1  
Old 06-07-2010, 12:09 PM
bluegiraffe bluegiraffe is offline
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Baclofen Pump

As closed minded as I am for such an invasive option - I am considering the baclofen pump as a way to help me with the severe spasms and spasticity I am experiencing that has made me unable to stand or walk at all over the past 9 months.

Understanding is that the pump can be removed if needed and a trial of the therapy is done in the hospital before being surgically implanted.

Can anyone give me some first hand experience - pros and cons ?

Can I expect if I am a candidate that it will allow me to be mobile again ?

thanks for any input
  #2  
Old 06-07-2010, 08:16 PM
Mike B Mike B is offline
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Hi blue giraffe,
I'll tell you about my experience with my baclofen pump. Like you severe spasticity is one of my major ms issues. I've had my pump for five years.
  #3  
Old 06-07-2010, 10:27 PM
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Hi Bluegiraffe

I am more than happy to share my experience with the Baclofen pump. I have had a Bacvlofen pump since 1999.

I am on my 3rd pump & it has really made a great difference for me.

To answer a few of your questions:

Yes ,the pump can be removed it is not a permeant thing, if it doesn't happen to work out.

The pump trial is done before the pump is implanted. I look at it as taking a test drive with a car. To simplifie it: you are givin a dose of the liquid baclofen in the spinal column. You are then evaluated by PT's prior to the injection & few times over the next 4 hours. By the time you leave, the dose will be out of your system.

I can say the baclofen pump has worked for me. But I would not have gotten the full benefit from it with out doing physical therapy in conjunction.

I have links for all things Baclofen pump in my profile..LOL I am also a patient advocate for the pump.
Please feel free to ask me any questions you may have.

Take Care, Bob
  #4  
Old 06-08-2010, 05:41 PM
Mike B Mike B is offline
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Hi again, bluegiraffe. Whoops, I didn't finish what I meant to tell you yesterday. Anyway, I agree with Bob's assessment. I have had a pump for five years, and it will be another two years before I need a replacement. Each six months when my pump is refilled, my doctor gives me an updated printout of the pump settings, flow rates, and remaining battery life. The refill is quick and easy.

Bob makes an important point about physical therapy. My doctor stressed that although the pump will provide some immediate relief from stiffness and discomfort, the main purpose of the pump is that it would allow me to exercise (swim, in my case). In the long term, it is the exercise that would provide the lasting benefit.

Pros: It really works well. The amount of baclofen you get can be adjusted according to your needs by your doctor with his/her remote control. Lots of benefit with very little medicine ('like sniffing the pill,' my doctor says), so no baclofen side effects.

Cons: At first it is a little scary. That doesn't last too long. Also, it sits at the location of your appendix. I think mine looks like I swallowed a hockey puck. You may have to adjust how wear your clothes a bit to accommodate this.

Overall, I have had a lot of plus with little minus. My neurologist has patients who have been able to walk again after being in a wheel chair. However, this does require a commitment to PT/exercise.

If your doctor thinks it could help you, then I recommend you go for it. I'm glad I did. Best luck...
- Mike
  #5  
Old 06-08-2010, 07:20 PM
bluegiraffe bluegiraffe is offline
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thanks mike and bob - very helpful information, I appreciate it.

It makes alot of sense that PT is an important piece. Due to my spasms and spasticity I have been unable to make any progress with PT that I recently had at home.

Some more questions: -
- Does the initial trial - I think overnight in the hospital provide an immediate result telling you if the pump will help you ?
- Understand one of the risks is infection - have you experienced this at all ? If so; how is it handled
- Is there a choice on where the pump is placed ? Does it have to be in your abdomen ?
- How is the medicine replenished ? In the doctors office ? How long does it take ?
- How long does the surgery take - how long in the hospital ?

I am very scared of the surgery and of having the pump implanted. But the condition I'm in is unbearable and I don't see any end in site to improve - so this might be my only option to enable me to move.

Thanks again.
  #6  
Old 06-09-2010, 09:43 AM
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Hi Bluegiraffe

The pump study is usually done out patient. It is a long day but doesn't entail staying over night.

From what I have heard & my expereince, the dr gets with the pt's, etc to go over the results of their evaluation.

I have never had an infection from the installation of one of my pumps. I am on my 3rd one.

As far as I know, the pump has to go in the abdomen. It can be moved higher or lower in that area.

The pump refill is actually a pretty easy deal. For me, it usually takes about 20 minutes. First, my dr interegates the pump with the hand held device. That tells them the amount of baclofen left in the pump, etc.

Then the dr feels for the pump & places a plastic template over it. They then draw a little mark where the refill port is located.

My dr then preps the area. I always say the needle they use is the size used to draw blood. She says "Little Pinch" & in the needle goes. But since my dr is good at this process, I don't feel the pinch.

The liquid baclofen in the pump is withdrawn & checked with the total the pump says is left. Then, the fresh liquid baclofen is put in & the pump is recalibrated for the new baclofen.

Mike gets his pump refilled every 6 months & I get mine refilled every 4 & 1/2 months. The limit on how far you can go before a refill is needed is 6 months.

There are also 2 different size pumps. There is a 20 cc pump, which is the most widely used. It is about as round as a hockey puck but only 1'3rd as deep. There is also a 40 cc pump. That is the model I have. It is a hockey puck...LOL. It is also the same size as the old pump. The big difference is the old pump held 18 cc's & the new pump holds 40 cc's.

The implanting of the pump can be done in different ways. In my case, all of my pumps starting with the first one were done out patient. After talking with my Medtronic reps & many dr's, that doesn't seem to be the way it is done now.

In some cases, there are 2 dr's involved...the one implanting the pump & the dr who will be managing the pump. I know the managing pump dr will many times keep the patient in the hospital/rehab for a determined period. This allows for them to see how you are doing with the pump & if any adjustments need to be done. Adjusting the dose is very easy.

Sorry for this being so long

Take Care, Bob
  #7  
Old 06-09-2010, 11:32 AM
kmallory1 kmallory1 is offline
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I've had the baclofen pump for about 15 months. I have spasticity, most severely in my left leg.

I resisted the idea of a pump for a couple of years. It just sounded too weird and invasive. I was afraid of the surgery, too.

Now I wish I'd done it much sooner. I am 5'8" and weigh 150. The pump is in my abdomen on the right side, just below my waist. It doesn't show through clothing, but occasionally "pinches" on the edge if I wear jeans that are kind of tight around the waist.

The test took 1 day, outpatient in hospital. They did an injection of baclofen into my spine, then a PT came by every couple of hours to test spasticity.

Surgery was not bad, I stayed in the hospital for 48 hrs.

My pump is set at a very low dosage, because I have weakness in my right leg, and it has to be low enough not to make that worse.

I wouldn't say it's helped my walking much because of that.
  #8  
Old 06-09-2010, 01:30 PM
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hunterd hunterd is online now
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HI BLUEGIRAFFE,
I`VE HAD MY PUMP FOR 4 YEARS. IT WORKS GREAT FOR THE SPASTICIY, BUT REMEMBER, IF THAT SPASTICITY IS IN YOUR LEGS (LIKE MINE WAS), YOU`LL NEED SOME FOR MOBILITY. I`M IN A WC 24/7, BUT I STILL NEED SOME SPASTICITY FOR TRANSFERRING. I WAS ALSO HESITANT ABOUT THE SURGERY. NEVER HAD AN INFECTION. AND THE STUDY WAS DONE AS OUTPATIENT ALSO. - How long does the surgery take - how long in the hospital ? THE SURGERY ONLY TOOK A FEW HOURS (I THINK) AND MY STAY IN HOSP WAS 48 HRS. ABDOMEN WAS THE ONLY CHOICE I HAD. I ALSO RECOMMEND IT. GOOD LUCK,

DAVE
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  #9  
Old 06-10-2010, 06:23 AM
bluegiraffe bluegiraffe is offline
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thanks again for the responses - very helpful and triggers more questions for me.

- if you were unable to stand/walk - did the pump enable you to do so (in conjunction with PT/rehab) ?
- hunterd - why does spasticity help with mobility/transfers - I've heard this before but don't understand how it is helping me - I thought the spasms and stiffness were the reasons why I became immobile in my legs.
- I am too thin right now - 5'4'' most likely weight about 90 libs. will the pump cause me problems due to my weight do you think ? Trying to gain back some but think atrophy may be playing a part in the loss of weight.
- did you try baclofen via tablets before going forward with the pump ? if yes; how many mgs did you try before the pump and what was the determining factor to go to the pump ?

thanks again for your input - as you can tell I am not too ready (if ever ) to do this - but again life is not going well for me in the state I am in - alot of pain and no mobility.

I am trying to understand if the pump will provide both comfort and mobility for me to have the right expectations.

I am planning to set up an appt with a pain specialist that will do the trial test - but even going out of the house for a doctors appt is very tough. My husband carries me down stairs and in the car - I have pain in the car even with the slightest movements also.
  #10  
Old 06-10-2010, 07:21 AM
okie76 okie76 is offline
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Baclofen Punp

Thanks for the information. I'm scheduled to have the pump inplanted on June 16. Have you had a mri done with the pump?
  #11  
Old 06-10-2010, 10:41 AM
kmallory1 kmallory1 is offline
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I was taking about 70 mgs of baclofen a day, and couldn't tell that it was doing anything.

When you have spasticity and are stiff, the pump will help relieve that. If it is turned up too high, you have weakness and can't stand up. The nurse practitioner who does mine says that it should be turned up every week until we go too far and my knees collapse when I try to stand on my own. Then she will turn it back down a little.

I'm going slower than that because my leg weakness is so inconsistent. I never know what's going to happen when I stand up and start to walk.

I have had a couple of MRI's since the pump was implanted. They're no problem. The pump stops during the MRI because of the magnet. It needs to be checked right after the MRI to be sure it re-started OK. They told me they've never had one NOT re-start, but they check anyway.

They have a hand-held computer with a little disc that pops out on a wire. They hold the disc over your pump (through your clothes) and it reads out on the computer. They adjust the dosage on computer, it transmits back to the pump. They can see how much baclofen you have left, what your current dosage is, etc.
  #12  
Old 06-10-2010, 12:55 PM
Mike B Mike B is offline
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hi again, blue giraffe

you have a lot of responses here and I must say that I think they are all right on the mark! regarding your recent questions:

Everyone needs some stiffness in their legs, or else they would flop down like a wet noodle and couldn't get up. But too much stiffness (like us) and you can't move - and it HURTS. We're trying to hit the 'sweet spot' of just enough stiffness - but not too much. Sometimes I get my pump adjusted too high, and the next day I'm too noodly/floppy. No big deal - I stop back in and have the pump adjusted a bit. If I then feel too tight, I stop back in for another quick adjustment. I do this as often as needed until it's just right. The required amount changes over time and with the seasons. The doctor does this fine tuning in just a few minutes without even touching me.

When your pump is adjusted just right, you have a window for your pt/exercise. As you begin to regain motion and build muscle mass, your pump can be adjusted as needed to prevent your new muscle mass from also being spastic. Good pt will help identify the most beneficially exercise.

Sounds like you're doing the right things, bluegiraffe, and that you have the positive attitude and support that we all need. We are here for you too.
- Mike
  #13  
Old 06-10-2010, 12:57 PM
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hunterd hunterd is online now
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BLUE, YOU NEED THE RIGIDITY IN YOUR LEGS TO HELP PROVIDE SOME SUPPORT TO YOUR LEGS MUSCLES. WITH THE PUMP, THE DR WILL BE ABLE TO SET THE DOSE TO GIVE YOU ENOUGH RIGIDITY TO HELP WITH SUPPORTING YOU DURING VARIOUS ACTIVITIES. DEPENDING HOW MUCH "HELP" YOU NEED (ONE OF THE REASONS FOR THE TESTING) AND WHEN YOU NEED IT, THE DR CAN PROGRAM VARIOUS BACLOFEN LEVELS FOR VARIOUS TIMES.
I WAS UP TO 70 MG DAILY OF ORAL BACLOFEN. ONE OF THE SIDE EFFECTS OF BACLOFEN IS DROWSYNES(SP), THAT`S THE REASON I`M ON THE PUMP.
WHILE THE PUMP DID NOT "CURE" MY MOBILITY ISSUES, IT MADE IT MUCH EASIER TO MOVE AROUND. IT ESPECIALLY HELPED MY WIFE (CAREGIVER) AND ANYONE ELSE ASSISTING ME. ANY OTHER QUESTIONS, PLEASE ASK.

DAVE
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  #14  
Old 07-12-2010, 12:42 PM
Joan Joan is offline
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3 weeks post implant

Greetings. My baclofen pump was implanted 3 weeks today. I was walking with stiffness and imbalance for 3 years post an acute attack of transverse myelitis. Could not tolerate PO baclofen beyond 60 made me too sleepy. Immediately felt relief of spasticity after implant but spinal headache held me down for a week after. Once headache was gone, and I began doing more, the spasticity increased. I did however realize that the pump was a positive move as I could appreciate less stiffness in my hips thus improved walking.

I accept that it will take some time to titrate and get the dosage 'sweet spot' and it even makes sense that season adjustments would be needed. I have had 3 adjustments, first setting was at 30mcg, now I am at 48mcg. I was told it takes 24-48 hrs for adjustment to take effect. I'm not sure if I need to have more aggressive increases or wait until my body adjusts to all.?

I 'get' that some tone is needed as well. I have also had intense pain over the last week and night spasms making it difficult to sleep. I was also taking Neurontin pre-pump implant and stopped.

It is great to read all of your input. I am a single mom of and amazing 11 year old girl and a business profession; in the spine market ironically. I consider myself blessed and fortunate and know I could be worse off.

So, basically just venting. Comforting to know I'm not alone.
  #15  
Old 07-12-2010, 09:46 PM
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BobOP BobOP is offline
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--Hi Joan

Welcome to MS World. I am glad to hear things are going well for your new pump.

I had the same expereince that you have had with the spinal headaches. Mine passed & then I was on my way with the pump.

Just keep letting your dr know how you are doing with the pump. I did that for awhile before we got the dose right for me. I have had the same dose for pretty much the last 8 years.

---Hi Okie

I hope you are doing well with the pump. As for your question....Yes, you can still do MRI's with the pump....The first time I had a MRI with the pump, I just let the MRI folks know. I gave them the card I got from Medtronic & they called.

I also did what they told me about seeing my pump dr after the MRI to make sure things were fine. I did that a few times before the pump dr told me to only get checked out if I knew something was wrong. I have done over 10 mri's with the pump.

Take Care, Bob
 

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