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anthonym

New member
Joined
Apr 11, 2007
Messages
6
Reason
PALS
Country
US
State
louisiana
City
franklinton
Back from Houston, still PLS diagnosed, 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
 

Al

Moderator emeritus
Joined
May 25, 2004
Messages
7,960
Reason
PALS
Diagnosis
10/2003
Country
CA
State
On
City
NW of Toronto
We had some discussion of the pump a while back but I don't recall if anyone here is using one.
AL.
 

MtPockets

Very helpful member
Joined
Jun 1, 2006
Messages
1,528
Reason
PALS
Diagnosis
05/2006
Country
US
State
Ms
City
Gulfport
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

Member
Joined
Feb 12, 2007
Messages
13
Reason
PALS
Diagnosis
08/2006
Country
US
State
Florida
City
Osprey
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

Very helpful member
Joined
Jun 1, 2006
Messages
1,528
Reason
PALS
Diagnosis
05/2006
Country
US
State
Ms
City
Gulfport
Pump or not to pump, that is the?

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

Member
Joined
Feb 12, 2007
Messages
13
Reason
PALS
Diagnosis
08/2006
Country
US
State
Florida
City
Osprey
To Pump!

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

New member
Joined
Oct 1, 2007
Messages
3
Reason
DX UMND/PLS
Diagnosis
01/2003
Country
US
State
CA
City
CARMEL VALLEY
Baclofin pump and pls

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

Active member
Joined
Jun 9, 2006
Messages
51
Reason
PALS
Diagnosis
02/2006
Country
US
State
ky
City
lexington
Hi

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

Moderator emeritus
Joined
Sep 17, 2006
Messages
3,543
Reason
Learn about ALS
Country
US
State
New England
City
Anytown
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
 

Al

Moderator emeritus
Joined
May 25, 2004
Messages
7,960
Reason
PALS
Diagnosis
10/2003
Country
CA
State
On
City
NW of Toronto
I believe we have 1 or 2 members using the pump. Hope they see this and respond. Welcome.
AL.
 

janf

Distinguished member
Joined
Sep 23, 2006
Messages
132
Reason
PALS
Country
tift
State
ga
City
tifton
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
 

Geo

Senior member
Joined
Aug 24, 2007
Messages
500
Reason
DX UMND/PLS
Diagnosis
12/2001
Country
US
State
Florida
City
Ruskin
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

New member
Joined
Oct 5, 2007
Messages
1
Country
WA
State
Washington
City
McCleary
Feedback about how pump feels and works.

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

Member
Joined
Feb 12, 2007
Messages
13
Reason
PALS
Diagnosis
08/2006
Country
US
State
Florida
City
Osprey
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

Member
Joined
Feb 12, 2007
Messages
13
Reason
PALS
Diagnosis
08/2006
Country
US
State
Florida
City
Osprey
To Gina re: Baclofen Pump

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
 
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