Improvements!!

[Equinney]

Since I had the Baclofen pump installed my spasticity pretty well has went away. There have been a couple of dosage adjustments. I am now around 94 micrograms daily. I waited a while to make sure wasn’t a coincidence, but I’ve noticed some improvement in my bladder, I’m able to empty easier and more than before the surgery. I was still using my upright walker until a couple of weeks ago. I was at my neurologists, and I mentioned trekking poles as an option. She watched me walk and she lit up with and said if I don’t get them, she would get them for me. She thought my gait was that much better. So, thanks to Amazon, I have a set of trekking poles. LOVE THEM!! I get outside more, and I’m getting more “exercise” in. My dog loves going out walking with me even though it’s usually just a trip around the house through the yard. Balance and fatigue of course did not improve so have to watch distance and pay attention to each step. It took some getting used to using them, but wow. Walking upright and not bent over and leaning on the walker is great on my back and arms too. The only downside is not being able to carry things like I could with the walker, but oh well, I can deal with that.

[3WheelWonder]

Fantastic! One step at a time, Brother.

[COwithAMN Administrator AMN EASIER Volunteer]

Do any others here have positive experiences from using a Baclofen pump that they can share?

[sandiegogirl22 in reply to COwithAMN]

I have had the intrathecal pump for 8 years. It has helped my spasticity immensely. I developed peripheral neuropathy about a year and a half after I got the pump. I blame the neuropathy on the fact that I had them plunge a needle into my spine for the pump. I don't know if that is the case, or if some AMN patients have neuropathy.

In addition to baclofen, I have prialt in my pump. Initially, it was for the pain, but the prialt didn't seem to help much with the pain. It does seem to help some with the spasticity. unfortunately, the side effects are horrible. I had ridiculous anxiety and my brain just doesn't seem to work sometimes. I get lost ALL THE TIME. On my way home, getting out of an elevator, going to an office I've been to several times. I also have trouble getting my words into writing. Texting is challenging and takes me way too long. I also have a problem with context. Sometimes, I will start talking about something and not explain what I'm talking about. This drives my husband crazy. He always says, "think before you speak", which, if I could do, I would. When I have conversations with people, sometimes they look a lost. I usually ask now, if I'm making sense. This is a really long paragraph, but I did go through a treatment for TMS Trans magnetic stimulation for 6 weeks and my anxiety and depression were GONE for about 6 months. I have had depression my whole life, and the TMS helped with that too. I kind of feel like the anxiety is coming back, so I think I need to go in for another round.

I am lucky the intrathecal pump and baclofen have worked for me.

[Catrick]

Hello Equinney,My neuro advises that women using the baclofen pump become doubly incontinent, do you know if this is always the case? He's not suggesting this for me because of this. I can now barely sleep thanks to the spasticity, its becoming intolerable. Incontinence is not an option however. Baclofen is not an option either.

So sorry to hear of your divorce. I went through this 5 years after diagnosis, he then became ill, ( cancer) with little money so he came back and after I looked after him through all the treatments he now looks after me. A dysfunctional relationship at best but somehow its working. Ex came back saying he missed the 'family life', the animals!, and someone doing his laundry!

[Equinney in reply to Catrick]

That’s about right for a lot of guys on missing the laundry. On the baclofen, it actually seems to be helping me on that. I was bed wetting 3-5 times a week. It’s now been several months since I have. I have been able to empty my bladder better it seems. The urgency is still there though. I have never heard that about baclofen and women. I will message and ask my neuro what she knows or can find out.

[quilling]

So happy to hear something helping someone!!

[Djp1989]

Any worries with the pump and Adrenal Insufficiency?

[Equinney in reply to Djp1989]

there have not been any for me. And from what I understand there should not be. With it treating the spasticity and the Addison’s not being related to that directly.

[Djp1989 in reply to Equinney]

I thought I remember reading someone got an infection from the pump somehow and the addison's disease caused them to not heal well. Maybe I am mistaken? Glad you are doing well! Praying we all get a cure or treatment soon!