New baclofen pump: So last Tuesday I... - Leukodystrophy Su...

Leukodystrophy Support

195 posts

New baclofen pump

Pugman37 profile image
6 Replies

So last Tuesday I got a baclofen pump implanted. I would like to know if anyone has had my experiences. I currently can only stand a little unlike before the surgery. I also have some incontinence and can no longer get an erection. Is there any hope that this will get better after a few weeks? I just want some

Written by
Pugman37 profile image
Pugman37
To view profiles and participate in discussions please or .
Read more about...

The ability to reply to this post has been turned off.

6 Replies
monkeybus profile image
monkeybus

Hello,

I had the Gablofen spinal injection earlier this week. Completely killed my ability to walk. And I couldn't urinate to save my life.

I take it you had the injection? How did you feel on that?

Hasn't put me off, I am having my operation in three weeks.

Pugman37 profile image
Pugman37 in reply to monkeybus

When I had the injection it took away the spastcity but I couldn't walk

monkeybus profile image
monkeybus in reply to Pugman37

Yes, takes away all muscle tone completely.

More so than an enormous dose of Lyrica.

I am having the pump fitted because I am worried about the damage to my brain from all of the high dose Lyrica/Gabapentin.

Even the spasticity I can live with. If I can but stop the night spasms, I'll be happy.

Allder profile image
Allder

I will get the injection soon to see how the pump can help me. I can walk today with a cane quite good, it's the spastcity that is a big part of my movementdisorde. So if it's harder to walk with this pump I get confused, I was hoping this should help me with that instead.

Pugman37 profile image
Pugman37 in reply to Allder

I hope the injection works. I would love to be back to a cane. But everyone is different

monkeybus profile image
monkeybus

I like how the pump Baclofen dose is in the microgram range.

Couldn't really get much lower.

Once the Gablofen was starting to wear off, I took a huge dose of 4-AP, about 20mg.

I could walk quite well. I've posted before about the relation between a decent muscle relaxant and 4-AP. I am really hoping a decent trickle of Baclofen and plenty of 4-AP will see me right.

The ability to reply to this post has been turned off.

Not what you're looking for?

You may also like...

Difference between AMN and ALD

My 32 year old son just passed on June 27th . He was diagnosed at 25 with ALD. Everyone told me it...

New in fight with ALD

Hello everyone, My name is Ramona from Romania,my son was diagnosed recently with X-ALD ,he has 8...

Genetic testing for under 16s

Is it hard to get genetic testing for your son or daughter? It is suggested it is difficult for...

New to health unlocked

Hi, my name is Alisha. I’m a 33 year old carrier of ALD. My family found out about this disease...

Is there any aspect of your condition where you would support?

Whether you are interested in dieting, exercises, or a particular clinical trial, please share them...