Baclofen Pump: Miracle and/or Marvel? Yes!

[ijustcallit]

Going for surgery tomorrow!

I have finally figured out how to find this post and update my reply. Tomorrow I go for the baclofen pump surgery. It will not have any baclofen in it though. I go to the Pain Management Dr. for the first refill in about 10 days.

I am not too nervous. Anxious to get it done and come home. This neurosurgeon does it as out-patient surgery. A little nervous about that. But I'd rather be home with some good drugs. LOL The PM Dr. said I will be pleasantly surprised about the recovery. I will see about that!

Thanks again for your comments and replies! Marco, I hope you are doing great. Talk to y'all soon

[Kimba22]

Hi ijustcallit,

I hope all goes well with both your surgery and recovery. I also hope the pump works very well for you!

I look forward to reading your updates. Best of luck!

[Marco]

I am not too nervous. Anxious to get it done and come home. This neurosurgeon does it as out-patient surgery. A little nervous about that. But I'd rather be home with some good drugs. LOL The PM Dr. said I will be pleasantly surprised about the recovery. I will see about that!

I'm excited for you and hope you respond well to the pump. My pump is still handling the majority of my symptoms. I remain walking without mechanical assistance and have been able to wean off my most serious pain medications. I still have MS and have good and bad days, but my bad days are incredibly better than my previous best days. I'm pulling and praying for you. Please update us when you can.

[hunterd]

+ experience

I have had two of them and each one received was not a problem at all as far as recovery and discomfort. The relief that I got from my spasticity was incredible! I went from having a 280 pound guy not be able to bend my leg, to being able to bend it on my own! While I do not walk anymore (it happened after I received my first baclofen pump [I was barely able to walk anyway]) I am more than comfortable exchanging what little was left of my mobility for the relief that I now have!

[ijustcallit]

1 week post surgery

Well, I made it!! Surgery was outpatient. We left the house at 9am and were home at 3pm. They sent me home without any antibiotics or pain pills. I thought, well, we will see how this goes.

I took my ibuprofen when I got home. I also alternated with Tylenol. No problems with pain or infection.

I went yesterday for my follow up appointment with the Phys. Asst. at the neurosurgeons. She said everything looks good. The stitches will dissolve on their own. Yay! I was worried they had to pick at the stitches.

I do have a 6-7 inch incision on my lower right belly. There is a bump there. Sometimes when I'm wearing jeans, it pinches. And a 3 inch incisions on my back. But overall, it wasn't too bad.

I go on Tuesday to the PM/R Dr. to get the pump filled with baclofen. I can't wait!!!

Thank you all for your help! I hope this letter finds everyone happy and healthy!! I will let you know when it's filled.

[Marco]

That's amazing and I am so excited for you! I'm so glad you did well with the surgery and recovery. It took the bulk of two months for the pump to feel normal and the pinching stopped. I just got my pump refilled this week and it was super easy. I just hope the baclofen greatly improves your quality of life. Please keep us informed!!!

[Kimba22]

Hi ijustcallit,

Thanks for the update. Glad to hear everything went so well! Did you end up getting the smaller pump?

I had the dissolving stitches (with steri strips) the first time, too. Liked that a lot better than the regular stitches and staples I had last time (especially when they had a hard time pulling out some of the staples! ). I asked beforehand, too, and this doctor told me he preferred to use them because he felt that was more secure. I still don't buy that, but not like I was given any other choice.

You are braver than me. There was no way I was putting on a pair of jeans shortly after either of my surgeries! Just wore elastic waistbands, that were looser fitting (like was recommended). Not that I would have been able to wear much else afterward, anyway. Besides the area being sensitive, it didn't help how much the larger pump stuck out on me and all the swelling (developed something called a seroma) and bruising that I had after my second surgery. I guess I had quite a bit of scar tissue form around my first pump.

Good luck with your first refill, Tuesday. It's a real simple procedure, like Marco said, and will become even easier as time goes on. I hope soon you soon find the pump greatly improves your quality if life!

[ijustcallit]

Well the honeymoon is over. I stubbed my toe pretty bad in the shower two days ago and couldn't stand up. Then while getting ready I fell on my butt. Good thing my husband was home to help me. He had to drag me to the carpet so I could crawl to the bed, and he helped me get up.

At the doctors office, I had to wait for the doctor for an hour, in a room that was too warm and on a flat table. The pump filling went fine. He set it for 75cc for the day. He said I probably wont even feel it and it wouldn't kick in for another 12 hours at 6am. I thought it was gonna start working so I could get off the table by myself..oh well.

So everything was fine all evening. Then when I woke up around 6am, I couldn't move. I had to be helped out of bed. Very very weak. Now it is 3pm and Im still very weak. Cant move my feet at all.

Not sure if its the baclofen or the fall. I did fall right on my butt and my back does hurt.

Im exhausted. My daughter is typing this for me because my hands are tired from typing it once but it didn't post.

Its been a rough day.

[Kimba22]

Oh, goodness! I'm sorry to hear this!

Sorry we weren't clearer that the effect wasn't instantaneous. I was given too much at my trial and later on that evening couldn't stand up. But, I know I could still feel my toes.

I'm wondering if the fall (or waiting in a warm room too long) put you in a pseudo flare, a real flare, or if the dose of baclofen is just too high?

I'd be on the phone with PM/ R doc to get your dosage turned down ASAP. You don't need to get up on the table for that, it's done with the remote device they have. You can always go higher or back up to 75 mcg/ day at the next visit. You can always cancel if things get better (just explain what happened.)

Call your neurologist, too. But, I think he/ she will also want you to get your pump turned down first.

Hope things improve, soon. Feel better!

Hugs,

[ijustcallit]

Hello!! I am going to call the PM/R Dr. tomorrow. I took a nap. I feel a little more normal. LOL Not strong but able to type. I feel pretty much the same, weak, from the waist down. I felt this same way after the pump trial, after if wore off. But that time, my strength came back within 12 hours.

I guess I am going to have to get in and out of the car to get to the Dr. office. Not sure how I am going to do that.

Thank you so much for your opinion, it helps to know someone else has gone through this.

[ijustcallit]

Hello! A quick update, the doctor called me right back after I called this morning. He met me at the side door and adjusted the pump from 75cc to 34cc. Its been about 4 hours and I still cant move. Im going to give it more time but I might go again for another adjustment tomorrow. We'll see how it goes.

He said if I was having trouble breathing or confusion then I should go to the hospital for an adjustment. He made it very easy. All I had to do was get in the car at home in the garage.

That's it for now. Ill let you know how it goes.

[rdmc]

Hello! A quick update, the doctor called me right back after I called this morning. He met me at the side door and adjusted the pump from 75cc to 34cc. Its been about 4 hours and I still cant move. Im going to give it more time but I might go again for another adjustment tomorrow. We'll see how it goes.

He said if I was having trouble breathing or confusion then I should go to the hospital for an adjustment. He made it very easy. All I had to do was get in the car at home in the garage.

That's it for now. Ill let you know how it goes.

So sorry to hear of all your problems. If they lower the pump and you don't feel any different, I was just wondering if they had investigated the fall you took and if any damage was done from the fall that would put you in the situation you're in.

My pump was filled when they implanted it...it was set at 50 mcg, same as the test dose...over the years I've always had the pump adjusted up, never down. But I do know others on this forum have had to have downward adjustments.

But with the pump, if they're adjusting up and nothing is happening, they start to look for another problem. And likewise, if you're having the dosage adjusedt downward, and not noticing any difference, I think I'd have somebody start looking for some other reason, especially in light of your recent fall.

[ijustcallit]

Tuesday was a rough day for me. With the fall and the excitement of filling the pump. But the symptom of this weakness only manifested temporarily after the pump trial. The Dr. said this morning, I have been walking, if you want to call it that, with the help of my stiffness. Take away the stiffness and I am left with weakness.

Not any stronger after 8 hours with the change.

Maybe I'll have to go to Rehab. They can monitor my dose and give me Physical Therapy. I have to something, I need a shower.

[Marco]

Wow! I am so sorry about your accident and possible dosing issues. Are you still feeling pains from the fall? Are you not seeing any of the received benefits from baclofen trial? Yes, some people need the extra tone to stay mobile (I believe Hunter was one of those cases). That said, I really hope things get sorted out quickly.

Please keep us informed and know that you are in our prayers!

[Kimba22]

Hi ijustcallit,

I'm glad you were able to get your dosage turned down this morning (sounds like a concerned and caring doctor), but really sorry you haven't noticed any positive changes, yet. How discouraging.

Thinking of you and hoping your strength returns, soon. Please keep us posted.