View Full Version »› Baclofen Pump
anthonym
06-11-2007, 01:02 PM
Back from Houston, still PLS dx, no sign of LMN problems, thank God. They want to test her for a baclofen pump because she cant take more than 10 mg a day without getting terrible fatigue. Have any of you had a similar situation and had luck with the pump.
Thanks Anthony
We had some discussion of the pump a while back but I don't recall if anyone here is using one.
AL.
MtPockets
06-11-2007, 02:55 PM
I do not know about the pump, but I am taking 30mg by mouth a day and it seems to have helped slow the amount of spasms. My doc said to be sure to be consistent with the dose every day as it takes time to level out in the body??
God Bless
Capt AL
Raymond B
06-15-2007, 10:29 PM
Dear Anthony,
I had the pump installed about 8-10 weeks ago. I too became VERY fatigued with the oral medication. When I was at the Mayo they suggested that this might be a treatment to consider in the future. My Neuro decided that time had come about four months ago, I went through the testing with indications that it might be helpful. IT WORKS!!!!!!!
My spasticity has definitely improved. It seems to have been most effective in aiding with the ability to move my neck, turn my head and look to the rear, raise one of my arms more freely, bend enough to be able to pick up something from the floor (still not with ease but I can do it). This is not a cure all and does not work the same all of the time. It is still a great aid. I visit the pain mgmt MD about 2X per month. She gradually increases the dosage each time.
Apparently the dosage I am on can still be increased greatly..translating to hopefully staying a few steps ahead of the progression before I hit max dosage.
Questions welcome from anyone. Good Luck!
Raymond B.
MtPockets
06-16-2007, 06:57 AM
Hi Raymond,
I've never seen anything on the pump before. Can you give me an idea of what was involved with it, size, location, how do they change and refill, etc?
I appreciate the info. I'm currently on 30mg a day by mouth. It has slowed down some of the spasms, but they never completely go away.
God Bless
Capt AL
Raymond B
06-17-2007, 08:04 PM
Dear Al,
As we all know there is no perfect solution. What works for one person may or may not work for another.
After my experience I definitely think it is worth looking into if you are suffering from spasticity. Note that it does not work the same all of the time, nor does it always effect the same areas of the body. I have, however, had almost no clonus since the pump.
The pump is about the size of a hockey puck. It is inserted into the stomach, and then wired to the spinal column. A very small dose drips 24/7. This dosage is adjusted by the MD with a small hand held gadget which is held next to the skin at the location of the pump. Depending on the dosage the pump is refilled as needed. In my case that should be every 3-4 months bases on the current dosage. Clearly the insertion of the pump is a minor surgical procedure done as outpatient surgery. The refills are done in the doctor's office with a needle injecting the meds into the pump ain the form of an injection.
I have not had a "fillerup" yet. but I will keep you posted when this occurs. At my current dosage rate this will be in early Oct. If the dosage increases (which I believe it will) that date will be moved up.
Nothing ventured, nothing gained. Good Luck, and let me know if you have any other questions.
Raymond B.
candace
10-02-2007, 01:04 PM
Hi I'm new to this site. I've had PLS for 6 to 7 years. I'm able to walk with a walker and can still drive. I feel very fortunate to have as much abilities as I do. I have been looking into getting a baclofin pump to help ease the stiffness from PLS. I'm wondering if anyone has had one and what you think??Thanks Candace
kathmc
10-02-2007, 02:14 PM
Hi Candace,
Welcome to the group. You are lucky, wish mine was as slow as yours. I also have PLS, diagnosised about 20 months ago after 3 years of falling, loss of balance & strength.
I can not help w/ question as take that drug orally. Is there an advantge to the pump?
Kath
Lexington, Ky.
CindyM
10-02-2007, 06:25 PM
Hi Candace, welcome to the forum although I am sorry to hear of your DX. I odn't have much advice about your question but thank goodness we have highly informed folks around here who will have lots of input. Glad you decided to join us. Cindy
I believe we have 1 or 2 members using the pump. Hope they see this and respond. Welcome.
AL.
With the pump the meds go streight into the spine thus bi-passing the stomach . They put them in for people who can't tolerate the medicine. I have a friend Bryan who has one. Jan
Welcome Candy I dont tolerate baclofen at all , they gave it to me and in 2 days my Diaphram (which opens the lungs ) almost colapsed (relaxed too much)caught myself gasping for air . Tizannadine was the only drug i could tolerate ,makes me limp ,tried several different doses . When you get the pump make absolutley sure you need it and nothing else will work .it will be in your spine (between the vertebra ) Means limited movement . If you fall ,you could cause some major damage .So be really sure . Geo Good Luck
palomino722
10-05-2007, 03:01 PM
TO: RAYMOND B
Hello Raymond. I am a caregiver for my brother-in-law. He has the baclofen (ITB) pump due to a brain stroke Arterial Vascular Malformation. This was 3 yrs ago. I am interested in your feedback about the pump where you say below, "does not work the same all of the time". Shawn can not express language well anymore either (aphasia). We are seeing increased toning off and on. We think it is towards the end of the pump dose sometimes also. His is refilled 4-6 months.
Can you describe what you feel when it is not working the same all the time?
I need to find out from the DR what dose and what times it is administered by the pump, which we will be finding out soon. Toning/spasticity seems worse when sleep is not good or when upset (i.e. incontinent accident or bad news or frustration, etc).
Any feedback would be greatly appreciated.
Sincerely
Gina
Dear Anthony,
I had the pump installed about 8-10 weeks ago. I too became VERY fatigued with the oral medication. When I was at the Mayo they suggested that this might be a treatment to consider in the future. My Neuro decided that time had come about four months ago, I went through the testing with indications that it might be helpful. IT WORKS!!!!!!!
My spasticity has definitely improved. It seems to have been most effective in aiding with the ability to move my neck, turn my head and look to the rear, raise one of my arms more freely, bend enough to be able to pick up something from the floor (still not with ease but I can do it). This is not a cure all and does not work the same all of the time. It is still a great aid. I visit the pain mgmt MD about 2X per month. She gradually increases the dosage each time.
Apparently the dosage I am on can still be increased greatly..translating to hopefully staying a few steps ahead of the progression before I hit max dosage.
Questions welcome from anyone. Good Luck!
Raymond B.
Raymond B
10-05-2007, 09:28 PM
HI cANDACE,
i HAVE THE PUMP. hAVE POSTED A LOT OF INFO ON THIS SITE. i KNOW THERE ARE SOME PROBLEMS WITH THE SITE TONIGHT, HOWEVER, iF YOU HAVE ACCESS TRY TO FIND MY POSTINGS. iF YOU CAN FIND THEM AND HAVE ANY QUESTIONS..PLEASE FEEL FREE TO CONTACT ME. (IF YOU CAN'T FIND THE POSTS, LET ME KNOW AND i WILL ANSWER ANY QUESTIONS I CAN.
Raymond B.
Raymond B
10-06-2007, 12:28 PM
TO: RAYMOND B
Hello Raymond. I am a caregiver for my brother-in-law. He has the baclofen (ITB) pump due to a brain stroke Arterial Vascular Malformation. This was 3 yrs ago. I am interested in your feedback about the pump where you say below, "does not work the same all of the time". Shawn can not express language well anymore either (aphasia). We are seeing increased toning off and on. We think it is towards the end of the pump dose sometimes also. His is refilled 4-6 months.
Can you describe what you feel when it is not working the same all the time?
I need to find out from the DR what dose and what times it is administered by the pump, which we will be finding out soon. Toning/spasticity seems worse when sleep is not good or when upset (i.e. incontinent accident or bad news or frustration, etc).
Any feedback would be greatly appreciated.
Sincerely
Gina
Dear Gina,
When I referred to the pump not working the same all of the time, I was referring to the fact that the levels of REDUCED spasticity vary from time to time. Overall my spacticity is greatly reduced and my clonus has almost completely disappeared.
When I refer to not working all of the time I am talking about the amount of reduction in the spasticity and sometimes the overall effectiveness in a specific area.
The dosaga of medication is determined by regular visits from the administering MD. The dosage is delivered through an outlet in the spine which is connected to the pump and operating 24/7.
I also find that tiredness/fatigue reduce the effectiveness of the positive effects of the pump.
Best of luck with the effectiveness of this program of treatment.
Raymond
Raymond B
10-06-2007, 01:06 PM
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
candace
10-07-2007, 09:06 PM
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
bdyle
10-08-2007, 07:34 PM
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 B
10-09-2007, 10:11 PM
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
