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traveler1

Member
Joined
Oct 11, 2010
Messages
20
Reason
DX UMND/PLS
Diagnosis
04/2009
Country
US
State
CA
City
Long Beach
Hi All,

I'm not a great contributor to this site, but I truly appreciate those of you who are! You're created a supportive community that's both informative and kind, as well as a forum that often tickles the funny bone! Many thanks!

Now it's my turn to make an offering. I'm finally ready to earn my keep by sharing my enthusiastic endorsement of the Medtronic Baclofen pump.

I'm a PLSer (first symptoms 2005, first neuro visit 2007), and though I was still walking, the spasticity was making some outings a little dicey. If a shopping cart was available, I'd be fine. But if not, I had to be very careful and often used a single or a pair of hiking sticks.

I finally took the plunge and received a pump implant in November, 2015. I'm from southern California but decided to have the surgery at UC San Francisco. I was in and out on the same day, spent the night at a hotel, and drove home the next day to so cal. Almost immediately, I could see an improvement. We adjusted the amount of baclofen i received four times in the first two months, each time slightly upping the dosage. I still have my moments of excessive spasticity, but they are very rare and not nearly as severe as they used to be. And I no longer need my hiking stick(s). (Although I sometimes carry them on walks in the hills, just in case i run into an errant coyote or mountain lion and need to make a hasty retreat!)

I don't want to be melodramatic, but the pump has truly made a positive difference in my life. I'm much more independent--I can go almost anywhere alone again! And traveling is much more fun now. In fact, for the first time in years, I was able to visit our Mammoth Lakes condo in the winter....in the snow! I'm also planning a trip to NYC for this summer. Things are definitely looking up!

I'd be happy to answer any questions anyone may have about my experience with the pump. It's been a miracle worker for me and I'm thrilled to spread the pump gospel!

Cheers!
Lauren :)
 

Schmutz

Active member
Joined
Apr 6, 2013
Messages
72
Reason
DX UMND/PLS
Diagnosis
06/2012
Country
US
State
NY
City
Rochester
'So glad you had good luck (or maybe I should say "good medicine"). I'm feeling iffy about my Baclofen right now. 'Twitches at night are waking me up again. This condition is such fun!
 

Tractor Boy

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Joined
Nov 1, 2014
Messages
165
Reason
PALS
Diagnosis
03/2012
Country
US
State
Michigan
City
Belleville
Lauren, glad the pump is working out for you! I've been thinking about it and I know it would do me good, but the pictures Dr. Google shows freak me out totally. Is it noticeable? Is it uncomfortable? Does it hurt?

Also, I see no easy way to decipher what spasticity feels like to different people. To me, it was a miserable, aching feeling in my hips and legs. I took my first dose of Baclofen in 2012 and that achey feeling went away. I've been taking Baclofen on a regular basis ever since. Lauren, how would you describe what your spasticity feels like?

Also glad to read you are still somewhat able to walk... Good for you! I've been in a PWC for nearly two years now.

TB
 

ShiftKicker

Moderator
Joined
Mar 16, 2015
Messages
3,521
Reason
DX UMND/PLS
Diagnosis
06/2015
Country
CA
State
BC
City
Vancouver
Wonderful endorsement! Thanks so much for posting that. I am so glad it's made such an improvement.

Did you notice a difference in other symptoms? Was there an increase in energy? While Baclofen did NOT work for me orally, it's been floated that a pump might bypass some of the negative side effects of taking pills.

Fiona
 

traveler1

Member
Joined
Oct 11, 2010
Messages
20
Reason
DX UMND/PLS
Diagnosis
04/2009
Country
US
State
CA
City
Long Beach
Hi Schmutz, TB and Fiona,

Schmutz--I generally don't get twitches and I don't know if Baclofen is supposed to help with that particular symptom. I can say that I took oral Baclofen for years, but it never really seemed all that helpful. My neuro thinks that oral Baclofen isn't very effective; at this point I'd agree.

TB--Stay away from Dr. Google! The pictures are so much scarier than the reality. I have a scar, but since i rarely prance around in belly shirts and bikinis, it's really no big deal. I'm actually rather proud of it! I think it's so cool that I have a pump in my abdomen, with a catheter snaked around to my back and up my spinal cord. Science rocks! And it's not very noticeable, hardly ever uncomfortable, and it doesn't hurt at all. Most of the time, I don't even know it's there. I did opt for the smaller model, so it doesn't pop out quite as much as the larger version. But even with this model, I only need refills every five months or so. No biggie.

In regards to my spasticity, I would only get achy when I overdid it. The difficulty for me was that it didn't take much to provoke the spasticity to freeze my legs. If it was the least bit chilly, or I was at all anxious, or started, or whatever, I'd stiffen up and my mobility would be severely compromised. I still get a little spasticity (as in tightness/ the zombie walk), but overall, it's soooo much better!

Fiona--I haven't really noticed a difference in my other symptoms. My speech is decent, but frustratingly slow compared to the old me. My hands are a little clumsy. And my legs are still rather weak. (Though I think the decreased spasticity has allowed me to exercise more effectively.) My energy is about the same--not a big issue for me. Also, I never experienced negative side effects from oral Baclofen, but if you did, the pump could be great for you. My understanding is that instead of milligrams, the dosage is in micrograms, and decreased side effects is common.

Overall, it's been great for me. I only wish I would have done it sooner!

Lauren:)
 

LouLou

Active member
Joined
Jul 11, 2011
Messages
91
Reason
DX UMND/PLS
Diagnosis
06/2011
Country
US
State
Washington
City
Woodinville
I've had my pump for 2 1/2 years. It is working very well for me too! I was taking 30 mgs of oral Baclofen per day before and it really wiped me out. My legs are doing quite well. The first year I had my dosage adjusted several times, and the we finally hit the optimal dose. The pump did not help my upper body spasticity at all. I still have occasional spasticity in my legs, but I've learned it's normally due to stress. Once I chill for awhile I bounce back. The pump is not uncomfortable, but sometimes it protrudes out more, which is probably from digestive issues. I have my pump refilled every 6 months now. I love to tell people about my new body part! And I named it "Pumpty Dumpty"! I'm able to ride my stationary recumbent bike 3 days a week for an hour (8 miles) with no discomfort!
 

avnl

Distinguished member
Joined
Sep 6, 2011
Messages
158
Reason
CALS
Diagnosis
02/2005
Country
US
State
RI
City
warren
M has had his pump for greater than 10 years. He had the pump replaced 2 years ago. For him the biggest advantage of the pump is that he does not have the drugged feeling he had on the oral Baclofen. This past February, he had Baclofen withdrawal due to problems with the catheter. This had been my biggest fear. He was stiff as a board, sweaty, itchy, hypertensive, and delusional. we had a horrible experience at our RI hospital and ended up at Yale New Haven very sick and was in the intensive care unit for 4 days. All the tubing was replaced. He went from Plankman to Gumby. Michael requires a large dose and has his pump refilled every 2 months. He wishes he had the bigger reservoir. The smaller one feels like a hockey puck under his skin but it is not painful and he really does not think about it. Despite the issues he is glad he has it. We now get our pump care in Boston which is inconvenient.
Anna
 

NanJay

Member
Joined
Feb 19, 2015
Messages
12
Reason
DX UMND/PLS
Diagnosis
11/2014
Country
US
State
Georgia
City
Atlanta
I have trouble with Baclofen due to the haze and druggy feeling, but if it works for you, they will do a trial with the pump, before you have to commit to getting it implanted. I had an epidural and the pump on a belt, so it was external and could be adjusted. I'm in Atlanta, so our Shepherd Spinal Center is very capable with these procedures. They will let you try it for about 3 days or so. It's great in that the medicine stays in the spine and not all over as with oral meds, so way decreased side effects. Unfortunately, it didn't work for me, so I didn't have the implant. If you are slim, it'll stick out, but the cost-benefit has to be considered; if it had worked for me I'd at least have that option to consider. Ask your health care folks about a pump trial if you haven't already discussed it.
 

Tractor Boy

Distinguished member
Joined
Nov 1, 2014
Messages
165
Reason
PALS
Diagnosis
03/2012
Country
US
State
Michigan
City
Belleville
Lauren (love the name Lauren), now you have me wanting the pump. I can't say I have any adverse side effects from oral Baclofen. I think I'll see about a getting a trial at my next Clinic visit in Oct, but it still seems pretty invasive though (to me).

Thanks for making us aware there are smaller ones...makes me wonder why anyone would want the bigger one...duh? The ones Dr Google showed me are round discs approx 3.5 inches in diameter and about 1 inch thick...ouch! How big is yours (approx)? TB
 

traveler1

Member
Joined
Oct 11, 2010
Messages
20
Reason
DX UMND/PLS
Diagnosis
04/2009
Country
US
State
CA
City
Long Beach
Hi all,
I just wrote a lengthy reply, but it seems to have disappeared. Argh! I'll try again tomorrow.
Lauren:)
 

konagirl

Active member
Joined
Oct 16, 2015
Messages
56
Reason
CALS
Diagnosis
04/2016
Country
US
State
FLORIDA
City
Jacksonville
This is something we are hoping for soon so I loved reading this! My husband has ALS but it is UMN dominant, his spasticity his biggest downfall right now. Hes on 80mg of baclofen orally and we really cant tell if he is seeing any help from it or not.

Question, to those of you with the pump already, did you do a trial run first? Our Dr said they can give him Baclofen injections first to see how well he tolerates it before doing the actual implant. Also, he does have a bit of foot drop, if the spacticity goes away (or at least improves) do you notice the weakness in your legs (or elsewhere) even more?
 

traveler1

Member
Joined
Oct 11, 2010
Messages
20
Reason
DX UMND/PLS
Diagnosis
04/2009
Country
US
State
CA
City
Long Beach
Hi All :)

LouLou, I'm glad you're doing so well with your "Pumpty Dumpty". (Hee hee) I named mine, too; she's Lulu! (Think of it as a misspelled homage!) And I'm impressed that you can ride the recumbent bike for so long...well done! I, too, get some spasticity in my legs. It's from the usual causes:mostly cold or stress. I'm thinking of fiddling around with my daily dose. I thought I'd already hit the sweet-spot, but I think it's worth experimenting with it a little more. How did you know when you found the right dosage? I think I'll start increasing again until either A) my spasticity is completely gone (ya, right!), or B) I start getting weak or I see diminishing returns.

Anna, Your experience with the catheter sounds very scary, indeed. I'm so happy that all is now well. And with getting refills every two months, I can see how Michael would possibly prefer the larger reservoir. It's a trade-off, I guess. For me, the larger unit was more than my frame could happily handle. For a larger person, it would probably be fine. Maybe he could switch his pump for a larger one when his current pump runs its course.

NanJay, I've never heard of an epidural trial with the pump on the outside; that's pretty cool. I'm sorry it didn't work out for you, but it sounds like you gave it a good try. When I did my trial, I seemed a bit looser, but since my spasticity comes and goes, it was impossible to definitively say that my experience was a success. I just thought I should give it a go, and if I didn't see improvement, I'd have the pump removed. Thankfully, it worked for me. But it's worth noting that this was my second trial. Maybe you could try again someday and hope for better results.

TB, You crack me up! But I feel ya! Googling the pump is the kiss of death! It looks huge, invasive, and very scary! Believe me...it's not. If you get the pump, and it works for you, you'll come to love it...scars, hockey puck-sized lumps, and all! I'm 5' 3 and usually weigh less than 100 lbs, so if it's no big deal on my frame, it'll probably be fine on yours (assuming you're bigger than I am). As to the different sized pumps, it's my understanding that both the large and small pumps share the same diameter; the larger version is just thicker/more depth. If you'll be needing a higher dose of baclofen, the larger pump would probably be better; if not, the small one would probably suffice. I say consider it.....nothing ventured, nothing gained!

Kona Girl, To my understanding, 80 mg is quite a lot, especially if he isn't sure it's helping him. I was in a similar situation, albeit on a smaller dose. I also questioned whether my oral baclofen was doing any good. And my neurologist outright believes oral baclofen in ineffective. When you switch to the pump, meds are administered in the micrograms, not milligrams, and at least for me, they're much more effective. But the first order of business is the trial run. During both of my trials (two years apart at different hospitals), baclofen was injected directly into my spine (epidural space?) and I was evaluated for the next few hours to check for spasticity. My latest trial wasn't a smashing success (see above), but it was hopeful enough to give the pump a try. I'm so glad I did. It's taken a least a few years off my disease process, and to me, that's huge! And your query about weakness, I'm not experiencing any more than I had before. I do feel, however, than I'm better able to exercise what I've got, so I actually feel a bit stronger.

Thanks everyone! Good luck!

Lauren :)
 

brayden722

Member
Joined
Aug 7, 2010
Messages
27
Reason
DX MND
Diagnosis
05/2007
Country
US
State
WI
City
Beaver Dam
Hi everyone. I don't post on here much but I thought I would give my two cents worth about my pump experience.

I went thru 2 trials for the pump. Both trials had me as a candidate for the pump. I, too, was on oral baclofen and two other muscle relaxers to take at night for sleep. I was very limited on the amount of oral baclofen I could take during the day as it made me very drowsy. I had to wait until bedtime to take it. Anyway, after the first trial I still couldn't convince myself to put that in my body. After over a year and going thru afo's, kafo's, cane, and soon to be wheelchair, I decided to have it done. I had to have the second trial to check the reaction to the baclofen being injected into my spine.

I had my first pump implanted in 2012. It was great! I had no need for assistive devices. I was able to walk somewhat normally and be active. As mentioned by others, I went back to have the doses increased and the best part, they can up the doses at night to help with spasticity and sleep.

This is long enough. I had to have the pump replaced last April because my pump malfunctioned and I passed away from withdrawals but that is another story lol Anyway, I am feeling better and have a new one in place :)

As the others have stated, if you have any questions, please don't hesitate to ask. I had the same questions and concerns that all of you have mentioned. It even killed me and I still went back to it. That should say something about the positive affects of the pump. Or it may say something about the time I was 4 and tried to be Superman by running head first into a concrete porch. I still think I would have went thru the wall if I would have been 2 steps further back lol

Take care all. Wish spastic free nights for everyone.

Craig
 

dkcarl62

Distinguished member
Joined
Nov 12, 2014
Messages
220
Reason
DX UMND/PLS
Diagnosis
03/2015
Country
US
State
mi
City
Novi
So I gather that most of you were taking upwards of 80 mg of oral baclofen before getting the pump. Any problem lying on your side with the pump? Lying on your stomach? I was directed by neuro to take 100 mg of baclofen during a bout of bad spasticity, and it actually made the spasticity worse! That said, would I still be a good candidate for the a pump?

Deb
 

brayden722

Member
Joined
Aug 7, 2010
Messages
27
Reason
DX MND
Diagnosis
05/2007
Country
US
State
WI
City
Beaver Dam
Hi Deb,

I had the same concerns as you are expressing. I was taking a high dose of oral baclofen and 3 other sleeping aids and muscle relaxers to get some sleep at night. Actually, I don't even know the pump is in me most times, especially when I am sleeping. At first you are very conscious of it because it is new and different. It has done wonders for me and my ability to become more active. I would recommend having the trial to see if you are a candidate. Best of luck to you.

Craig
 
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