My neurologist has recommended I get a baclofen pump. I would welcome any advice/feedback.

[4Rosie]

I’m scared of getting a baclofen pump and would love to hear from others who are braver than me.

[Jesmcd2 CommunityAmbassador]

Hi 4Rosie welcome to our nut house!☺️ I don't have a pain pump mysef. But I know that Kenu does?

He and others might be able to to help answer your questions.

J🌠👻

[4Rosie in reply to Jesmcd2]

The pump I need is for spasticity. I worried about the surgery and if it works. Please forward this to others with a baclofen pump. Thank you! 😀

[Kenu]

I am on my second pain pump as they last seven years. They normally due a trial injection and watch you overnight to view outcome. There are several drugs that can be used and some can be mixed. The surgery was a little longer than second due to time to run tube and make a pocket for pump. Mine is under my right rib cage and just above my belt. Both surgery’s were out patient and went really well with minor pain at site. It took about ten weeks to dial it in 👍. Then refills are 3-6 months depends on medication and setting. Refills are easy just a little poke less painful then a shot ☺️. Takes a couple months to heal up and after a while you forget about it unless you bump it hard. Medicare and supplement paid 100 percent and covers refills 👍. Best thing I ever did 😁. No side effects and does not mess your mind or liver and kidneys 🙏. I also got approval from Doctors for a remote and can do bolus every four hours as needed 👍😉. For me this is so much better and easier than taking half dozen pills 💊 to barely touch the pain and put me in lala land😖. I still have some pain about four, but was at a Ten for years prior. 👍🙏🐾😉🎃 Ken

[4Rosie in reply to Kenu]

Thank you! I still want to hear from people who have a baclofen pump for spasticity not pain, please.

[Kenu in reply to 4Rosie]

I have two of my friends back in Pocatello Idaho with SPMS and both have baclofen in there pumps and love them😉. One now has baclofen and pain medication in hers and doing great 👍. 🙏🎃Ken

[4Rosie in reply to Kenu]

Thank you! Please forward my message to them because I have specific questions to ask. 😃

[Kenu in reply to 4Rosie]

👌

[htenuta]

This post could not have appeared at a better time for me. I will be following it very closely. It looks like I'm on a trajectory for a Baclofen Pump with possible pain medication too. I have spasticity in my legs that impacts my gate when I walk. It varies in intensity every day and hour by hour. I have spasticity in my arms too which can affect everything from typing this post to pouring a glass of milk. My left side is more affected than my right side. I also have severe pain in the lower part of both legs and arms that throbs and burns constantly. I am on fairly high doses of Morphine at this time which I want to get off of as it does not help that much and the complications and side effects are just not worth it most of the time.

So I have several questions for the forum. If you can help me it would be greatly appreciated so I can bring more info to my Dr.

They are as follows:

- Is Baclofen the right and only medicine to use with the pump?

- While spasticity and cramping are big issues for me, and I hope the pump can help address them, my server and chronic pain in my legs and arms must be addressed as it is severely impacting my quality of life and it has been for close to 10 years now and it is getting much worse. I'm about to give up.

- I also take Trazodone for cramping and spasms, Is that a necessary option too for the pump?

- What else can a pump address/treat?

I know there are a lot of questions here but I feel it is necessary since just typing this post has taken me more than 45 minutes. The pain has also escalated to an unbearable level that I have to address in a different manner.

Please help me if you can.

Harry

[StemSearcher63]

Best thing I've done for myself since 1989 diagnosis. Surgery was not painful. Getting the dose increased high enough took about 8-10 months so be patient during that process. I had painful sudden spasms and continuous stiffness that made it difficult to push my leg muscles to move forward for walking. Refilling the pump was something I unnecessarily dreaded. That turned out to be an easy painless process.

[4Rosie in reply to StemSearcher63]

Thank you! Does the “hockey puck” noticeably stick out? I no longer walk so I wonder if lessening the spasticity will make walking possible again! Someone else said that they had to stay overnight & then go into rehab for a few weeks, was your experience similar?

[StemSearcher63 in reply to 4Rosie]

Over night stay but no rehab. No headache. I did stay flat of back for 48 hrs but got up to go to bathroom and take meals. My dose is now 650 mcg. It started at 150 and was increased by 10% at each 4 to 6 day visit with pain doctor. I started wih baclofen but went to Gablofen which is a more concentrated form of baclofen that I now have to have fefilled about every 9 months. The nurse who comes to my house to refill the pump has been very knowledgable and helped answer my questions. She is better than anyone else.

[Eleyne]

4Rosie , I got a baclofen pump in 2010 and I'm very glad I did. Before the pump, my legs were so stiff, I had to manually bend them when sitting.

The surgery wasn't lengthy but I stayed overnight at the hospital and then a couple of weeks in rehab while my body for adjusted to the new med delivery system. Then, I had several weeks of physical therapy while the dosage was adjusted. I get the pump refilled about every 4 months. That procedure takes about 15 minutes and is relatively painless. I had my pump replaced in 2016, and that was an outpatient surgery. I was home by 2:30 and had very little discomfort.

Before i actually got the pump, the Dr tested its potential effectiveness by injecting some of the meds directly into my spinal cord fluid. I then had to stay on my back for several hours while they waited to see how my body would react and to allow the injection site to heal.

The only problem I had with getting the pump was the 5-day killer headache i got. I forgot about the need to at flat for at least 12 hours, post surgery, and apparently, so did the nursing staff. If you get the pump, make sure they keep you overni, flat on your back, with a Foley catheter so you don't need to get up to urinate right away. And drink plenty of caffeinated beverages.

[4Rosie in reply to Eleyne]

Thank you so very much! Does the “hockey puck” noticeably stick out? I no longer walk so I wonder if lessening the spasticity will make walking possible again! My doctor said it was a 1 day procedure & didn’t mention rehab so I obviously need to ask about that.

[Kenu in reply to 4Rosie]

The pump is not very noticeable and I am skinny. Nobody ever noticed it since I lost so much weight. The initial procedure was a 7:am appointment and I was in recovery at 9:am. Was released about 6:pm that night. It was a Friday so I had appointment Monday morning for follow up. It was 6 years and ten months when replaced. Went in at 7:am and released at noon. Best thing I ever did 👍 🙏😉🎃🐾 Ken

[Eleyne]

4Rosie , no, the pump itself doesn't stick out, at least in me. 😉 The scar is about 4 inches, across my lower abdomen, a little lower than my belly button. I don't walk any more, either, but that's not to say you couldn't regain that function with physical therapy.

The rehab/physical therapy is my neurologist 's protocol for the pump. I'm glad they didn't send me home right away, tho. I'm pretty sure I would have been back in the ER with that massive spinal fluid leakage headache.

[StemSearcher63]

We southern girls don't know much about hockey pucks but it does seem to be the size of a Skoal can! About 3 inch diameter circle that is 1 inch thick. It is visible under a stretchy tee shirt but my spandex days are over so that is OK with me.

[KarenUSA]

I had a Baclofen pump put into my body in 2011.

My walking at that time was very stiff and my legs felt very heavy, like slogging through thick mud. Seven years later, I’m still walking with a cane or a walker. My balance has become a problem and i’m afraid of falling without some sort of support. However, my leg stiffness and heaviness are so much better with the pump. I had the pump replaced this past April. Both surgeries were considered out-patient and I came home in one day. The first surgery was more involved because the catheter has to be inserted into the spinal area. The first surgery was done after a trial dose of Baclofen into the spinal fluid to determine if it would be effective for me. The surgery was covered by Medicare insurance. I have no regrets about having the pump. The pump doesn’t bump out under the skin and the drug going directly into the spinal fluid, avoids the “brain fog” the oral bills caused. Hope this helps you make your decision.

[4Rosie in reply to KarenUSA]

Thank you 😊

[Fayezdayz]

Also considering a baclofen pump. I have my first appointment with the pain clinic on October 29. The responses on here have been very positive, and I so much appreciate hearing about your experiences. There are also a couple of groups on Facebook Regarding the baclofen pump. Just type in baclofen pump in your search bar and you will see.

[Kerley]

I was taking 7 baclofen pills a day. It took all my strength. I do have some pain/discomfort but decided I needed the strength for now. Tough decision each person is different. Good luck!