baclofen pump?

[JeanBee]

I am new to this site (Tifferbee's Mother) and I was wondering how many people are currently using a baclofen pump, and if you find it gives you some relief from your spasticity?

 

[Nighthawk]

Hi,

There is a recent thread HERE about a PALS (actually I should've said a person with PLS) that claims that had the Baclofen pump procedure done and legs feel better and has less spasticity. (See below)

https://www.alsforums.com/forum/general-discussion-about-pls/21606-bac-pump-improvement.html

 

[AKmom]

there have been a couple people that had one installed a while ago. But I do not recall them coming back to tell us how they are doing. I could be wrong and just missed it. However, it is rather radical proceedure since it can be dangerous and has to be carefully monitored in the hospital after its been installed.

My personal thought on spaticity is that learning to live with it to some extent is good because when you remove the spaticity, all you are left with is weakness. Its the spaticity that keeps us standing a little longer and such. Yes the spasticity is very uncomfortable, but to a certain degree, it is managable to be able to keep moving.

I have had spasticity for 20 years and it took about 17 of those years for me start taking baclofen. When I took the full amount per day that they recommended, I was falling asleep at the computer and falling alot more. I was not able to think clearly. I backed off and now have come to a place of realizing just how much I can take and still function at a full time business I just started 2 years ago.

So everyone is different. Hopefully if the people that got their pumps are still around, they can chime in on how they worked for them!

 

[hmm223]

Spasticity is a useful trait. I have way too much of it, but Baclofen was no help. No pump for me, but I took 50 mg Baclofen per day for months, with no effect whatsoever. Then I was referred to ALS clinic, where director/neurologist said the Baclofen was making me weaker, and we discontinued it.

 

[Nighthawk]

As AKmom pointed out, spasticity on a person with PLS or some other UMN damage means "strength".
It means you can still stand and your legs would support you.

You take spasticity away by using too much Baclofen and...weakness is what is left and, by having leg weakness, you wouldn't be able to stand and your legs would be too weak to support your body whenever you stand.
Keep that in mind.

NH

 

[baclofen pump nurse]

The baclofen pump CAN be very helpful. I have had 13 years experience managing patients with pumps. The reason it is a benefit is the way it delivers the medication - which is directly into the fluid that bathes your brain and spinal cord (CSF).
Most medications are in pill form, which must be processed by your body's organs and the small amount left over is picked up by your bloodstream and circulated to your brain. This is why most people taking baclofen pills are either awake with spasms , or asleep. It is a very sedating medication.
You need to be working with physicians and nurses that have lots of experience with pumps. The pump can be programmed to give you just enough medication to relieve your spasms, yet not remove all your 'tone'. Spasticity tends to make you stiff, which is something that can 'hold you up' so without any spasticity your muscles must do the job by themselves. As muscles loose their 'message' from your brain to work, they become weak. So you can either be like the Tin Man in the Wizard of Oz or you can be like a bowl of cooked spaghetti !
The Baclofen pump can keep you right in the middle, if managed properly. Hope this has been of some help. Feel free to ask me questions. I will do my best to answer them. I am not a pump pusher, I just have experience with the good and bad of the IT drug delivery systems - called pumps.

 

[Nighthawk]

Great post, Nurse.
Couldn't have explained it better.

 

[brayden722]

Thank you very much for this insightful explanation, BP Nurse. I am in the process of setting up my appt to have the pump installed later this year. I have been very hesitant about doing this, postponing it twice already. I would like to speak to you more on this if you would be so generous to take some of your time to do this for me. Thank you again.

 

[baclofen pump nurse]

I would be glad to help you, anyway that I can. I see your diagnosed of HSP. I have cared for a couple of people with that diagnosed. You will probably need a very low dose of Intrathecal baclofen. You have probably 'grown up' using your tone to support you. Have you been using oral baclofen?

Let me know your concerns and I will see if I can help you work thru them. OK?
Take Care & God Bless

 

[peter57]

Hi there.

I have a pump

Also have a thread on here detailing my experience with it

It's called
Baclofen pump test / use.

Have a read


Someone might make it a link for me as I don't know how to do it.

Also they might please message me and let me know how to do it for the next time.


Cheers

Peter

 

[John1]

Hi Peter,

Here's a link to the thread:

https://www.alsforums.com/forum/general-discussion-about-pls/21763-baclofen-pump.html

It is an interesting read. Your last entry was August 2010 at which time the pump was still not working well for you despite spending weeks in the hospital and several repeat visits for adjustments. How it it working for you now?

(To post a link, go to the web page you wish to link to, left-click the URL window at the top of the page to highlight the address, then right-click the highlighted address and choose "copy". You can then paste the address into any document you wish and it will appear as a clickable link.)

 

[TxRR]

I stretch my hamgstrings several times a day and have noticed a big difference in my ability to walk. I have never been a limber person or even able to bend over and touch my toes. But ever since I started stretching I have increased the flexability in my hamstrings which in turn gives me a longer stride when I walk and it feels more normal and relaxed.

There are alot of things that we can do to help improve our situation that does not involve surgery or drugs. Yes it takes a little more effort on our part but what is the alternative sitting on the couch, painful surgery's that may not work or those nasty side effects from the medications?

I drink a lot of fluids which has completely eliminated any muscle cramps. I am 100% cramp free. I exercise on a regular basis to maintain mobility which, yes it hurts and it's painful but that's only temporary. The long term effects are very benefical.

Forget the pump. There are to many risks involved. Just my two cents.

By the way, I have heard that if they ever open up the stem cell injection clinical trials all those with the baclofen pumps will be disqualified. Maybe someone else can elaborate on this?

 

[John1]

Hi TxrRR,

You provided invaluable advice on your old thread (now closed) on botox for treating spasticity. Your last post in June 2012 indicated a very upbeat prognosis for continuing injections every 3 months:

"Re: Botox injections to treat spasticity.
I just wanted to post an update on my progress. It has been a little over a month (May 10th) since my injections.

I have to say that I am very pleased with the results. It actually took about a month to really start feeling a difference. My doctor said it would be about two weeks but that was way off. I now notice that I walk a lot more freely and uninhibited. Today I was walking around like normal. Usually, I have to think about every step before I take it. Well, today I was walking around and not even thinking about it. I caught myself and said WOW this is truely amazing. Here I am walking around like a normal person. It felt great and to think I still have room for more improvement after a few more injections.

I would highly recommend this treatment to anybody."

Are you continuing with the botox treatments? Could you give us an update on the results of it to date?

Thank you.

John

 

[TxRR]

Hi John1,

I would be happy to update everyone. My last injections were in November but unfourtunatly for insurances reasons I have been unable to continue. My employer changed insurance companies effective Jan. 01, 2013. The new insurance company does not want to cover the injections so I am out of luck.

Although, during the time that I was taking the injections the results were good. Spasticity was reduced. My left foot tended to turn inward when I walked and that was corrected. Of course the injections only last for so long before another dose is required.

Currently, the only medication that I am taking is 60 mg. of Baclofen and 20 mg of Propranolol for tremors in my hands.

 

[baclofen pump nurse]

Thanks John
I am glad you mentioned stretching ! It IS the best way to directly effect your spasms. I know it is not the most pleasant thing to do, but I understand the pain does decreases if you continue to stretch on a regular basis - like 3 times per day.
Exercise and fluids play a major role in our overall health. I wondered if you ever tried drinking coconut water ? The kind without any sugars or preservatives. It will give you more potassium than eating bananas, and it hydrates you better than the sports drinks do.

I'm glad you advocate doing all you can for yourself - without relying on the medical 'professionals'