Status
Not open for further replies.
Baclofen Pump Update

To all interested in the "Pump":

I have had the pump implanted for many months. It has definitly significantly improved my spasticity, and has almost completely eliminated my clonus. The MD has regularly increased the dosage in very small increments. I do not have the side effect of not being able to keep my eyes open as I did with the oral dosage.

One situation has occureed which "may be" attributable to the administered dosage. I am having major difficulty in standing erect. The jury is still out as to the exact cause. It could be:
* the PLS
* a chronic problem with my lower back

or

The amount of Baclofen I am receiving through the Pump.

As a result the MD is very gradually decreasing the Baclofen dosage. The intent is to find the correct balance of all of the meds along with my regular PT. Problem being is that as the dosage of the Baclofen is being decreased ( and it is very minimally ) the stiffness is beginning to increase. I hope the balancing act works because the worse my posture becomes has a direct effect on the amount of pain I am in, (oftentimes excruciating) There has also been a notible increase in cramping in my legs and feet since the decrease in medication,

Despite the aforementioned difficulties, I am still glad I had the pump implanted, and continue to receive notible relief from many problems associated with the disease.

As a note: I have had one refill to date. The procedure involve delivering the meds directly into the pump through a needle inserted at the port of entry. It was an outpatient procedure which was done in the MDs office, took about 15 min. and was basicly painless.

I will keep updating this thread should any changes occur, or if anyone has any questions.

Raymond B.
 
Hope no one minds but I merged these threads so that if someone uses the search feature under Baclofen Pump everything will be in one place and make it easier to find.
AL.
 
Tony
The Pump should only be considered as a last resort . Does she have alot of pain ? How long Diagnosed ?Tests results ? EMG etc . Ive had friends that regreted having one put in . So i would think long and hard before considering one . I took Tizannadine because as they say, people whom dont tolerate
Baclofen well (criteria for the pump ) . Tizannadine makes you sleepy Im currently on nothing as i can tolerate a little stiffness but dont have Pain . Geo
 
Baclofin Pump

Thanks to all of you for your pros and cons concerning the pump. It is helpful to get different points of view. I know the final decision is mine but needed some input. It is a relief to have found other PLSers to share with it is a lonely disease with few connection. I feel so blessed that it hasn't turned into ALS and feel a kinship with them but also a huge difference. I know I have a tough disease but feel so fortunate. Thank you again. Candace
 
Raymond,

On a previous thread, Geo said that the pump limited your movement and could cause major damage if you had a fall. Could you elaborate on this, as how this has affected you. Thanks Billy,
 
Raymond,

On a previous thread, Geo said that the pump limited your movement and could cause major damage if you had a fall. Could you elaborate on this, as how this has affected you. Thanks Billy,
Dear Billy,

I can't imagine what Geo meant by the pump limiting your movement. It is implanted in the belly. You can feel the pump if you run your hand over it. However, it does not in any way limit my movement. On the contrary the form of deliverance of the baclofen reduces my spasticity and therefore makes movement easier. Note: I did not say easy, but did say easier. I can, with some difficulty pick a pencil up from the ground. As I see it, that is better than not being able to pick it up at all. I can actually turn my head and look out the rear window of my car. Before the pump I could barely turn to see out the rear passenger seat window.

Unfortunatelly I still do more than my share of falling. With the positioning of the pump I have never hit it when falling. It would be hard to hit with its' location.

As far as potential danger is concerned, the only major warning I have received is to never let the pump "run out" of medication. This can be prevented by regular visits to the MD. They can determine the date the meds will run out from the dosage settings.

Anyone considering the pump will (or certainly should) be tested by the MD for tolerance and potential effectiveness. NOT EVERYONE is a candidate. Only you and your doctor can make that decision.

I am not necessarily an advocate for this method of treatment. I do however feel that whatever options that are out there are worth investigating. We are all in a situation that is far from what we expected in life. If there is an opportunity for something that can improve the quality of my life..I will investigate it. This forum is really a wonderful way in which we can share experiences, thoughts, feelings and ideas. Hopefully it can open some doors from which we can receieve guidance and direction in participating in making well informed decisions for the best treatment for each of us in consideration of the specifics of each of our cases.

Godspeed,

Raymond
 
Baclofen pump

Hello all-

This is my first posting as i am quite nervous tonight. Tomorrow i am having the baclofen pump inserted. All i know is that i had great results during my trial, but know about the risks involved. After much contemplation i decided to go ahead and try this type of therapy as my symptoms of PLS are getting worse- which include slurred speech which is not fairing well in my high school classroom as i am an 11th grade English teacher.

Diagnosed after many MRI's, EMG's and a couple of spinal taps later in October of 2007 after experiencing the onset of symptoms in the fall of 2004. I am 43, walk with a cane and have many injuries from falls and am so stiff and unbalanced by the end of the day i can barely make it to bed. I am praying that this is going to give me more mobility and allow me to continue to teach and confidently mother my 12 year old son on my own as his father has never been in his life.

I feel like it is somewhat of a gamble because there are a number of things that can go wrong. But i am tired and fatigued all of the time. When i am able- i will gladly post my experience so others can better understand this procedure. God Bless all who read this. I have been reading posts for a number of weeks and finally felt as though i had something to add. Take care to all-

Mia
 
Good luck Mia. Thanks for sharing and keep us posted.
AL.
 
mia

i really hope your baclofen pump procedure goes well
and it gives you all the relief you need.
i know a few who have had one and it has worked for them
and given them a new lease of life.
i hope it does the same for you.
godbless and take care.
caroline.:)

ps. let us know how you get on.
 
Mia,

I'm so glad you joined the forum. It's nice to have you on board.

All the best with the balcofen and please do share your experience with all.

GOOD LUCK!
 
Mia,

I am so glad you posted. I myself was tested three weeks ago for the pump. I can't tolerate the oral baclofen.

My results were extremely mixed. On the Ashworth? scale, my arms and legs had very good improvement. Unfortunately, my ankles and feet became completely paralyzed. I also had two muscles in my ankle pulling in opposite directions and appeared to sprain the ligament. I was kept overnight with ice on the ankle all night. By morning, most everything was pretty much back to 'normal'. The ankle was just a little tender to the touch.

This was the test where they give you one shot of 50mcg's? of the drug all at one time.

The doctor, nurses and physical therapist all said they had never seen results with such opposite extremes.

Anyway, I'm going back next week to have the more intricate test performed. This one, you are in the hospital for 3-4 days and they give you small doses over a longer period of time. With this test, they actually place the catheter in the spine for the duration of the test.

I really want this to work. The walker has just about outlived its usefulness. If I don't get the pump, I will be in a wheel chair very soon.

Mia, I wish you the very best. Hope this makes a big difference and allows you to get some of your life back. Once you're back on your feet, please keep us updated on your progress.

Thanks,

Jeanette
 
results from the baclofen pump

Hello all-

i am home from the hospital and it has taken me awhile to get back on my feet. i must say though my spasticity is decreased, but i am very wobbly and unbalanced. each day i seem to get a little better, but it is a very slow process and i am concerned that i have perhaps sacrificed my balance for decreased spasticity, but only time will tell. overall i am pleased with my legs though- what a difference and no more oral baclofen and sleepy afternoons. i start teaching again next week so we'll see how the legs hold up. my speech however is extremely improved and that is the best improvement of all especially because i teach for a living. this disease keeps me baffled as each day can hold its own set of difficulties. i do feel blessed to still be on my feet and i will continue to pray that we all have success with whatever treatment we try. thanks for all the well wishes- i appreciate it more then you know!

God Bless to all and you are in my prayers-

Mia
 
Thanks for the update Mia. Hope you continue improve.

AL.
 
Mia,

Sounds like you're doing pretty good. Will there be any physical therapy in your near future?

My 2nd test was successful; however, I ended up in the hospital for 5 days.

We are going ahead with the implantation. It's scheduled for Aug 15th.

I'm not expecting to be feeling great anytime soon. I realize before we can walk, we do need to recuperate from the surgery.

Please continue to keep us posted. Of course, I'm especially interested since I'm only a few weeks behind you in the process.

Take care.

Jeanette
 
Baclofen Pump Statements

I dont know what kind of doc. some go to But one person here made a statement that the Pump goes in the Stomach .This could be no further from the truth as the Pump is put in the Lumbar spine .The reason i show concern is yes It is in the Spine between the Vertebra and if you do fall yes you can break that needle off so yes i am concerned for some going into this . The Lateral Spinal Columns run down each side of the spine . If that needle comes in contact with those Lateral Columns you'll have a pain you will never forget . This is something you should not do lightly this is serious business . Geo
 
Status
Not open for further replies.
Back
Top