Pump people...a question

[rdmc]

I went for a refill yesterday. About a month ago, I started having pretty significant spasticity in what was always my "good" leg, so I went in and they upped the dosage of baclofen

I really didn't notice much effect from the increase in dose (I'm up in the mid 200's now, so I had a 5% increase.)

Yesterday at my refill the physiatrist asked about my tone, and I told her I'm still having one leg that just wants to be spastic, and she can see that when I try to manipulate that leg. My thinking has been that the good leg turned bad leg, was just having this increase in spasticity due to my MS progression, and I was being cautious and getting the dose raised in increments so the other leg would not weaken when spasticity was toned down even more. But that dosage hasn't been enough to take care of the advancing spasticity in the other leg.

My physiatrist's take was completely different (and hadn't even entered my mind), she wonders if the catheter is in place. I asked how a catheter out of place could be keeping the one leg almost spasticity free, yet not getting med to the other leg. She didn't know, but I've had weird stuff happen before with my pump...so I think they might expect a "Ripley's believe it or not" situation with me.

Long story, short...I'm going to have a dye study. And now I'm wondering because yesterday's increase, after the refill (5% up again) hasn't done anything for the ultra spastic leg.

Have you ever heard, or can imagine a scenario where the catheter would be positioned so the baclofen can be treating one leg, but not the other? That's why my theory seems more likely to me, but I've had a dye study before and it's such an easy test...I don't mind making sure everything is functioning properly.

[Marco]

Before getting the pump, my right hamstring was my primary problem. Even though I had whole body spasticity my right leg wanted me to bash my head through a wall. I was on multiple pain medications including several narcotics, but could not get relief. The pump has been able to reduce spasticity everywhere except the right leg. My right calf has an increase in tone (no real pain), but my right hamstring is still quite painful. We increased the dose 10% in January and 11% in February and each time the leg calmed down for about 2 days. After 2 days, the spasticity was back and increasing. At this point, we're not sure we can keep the right leg under control. I have less pain now than before my surgery even after stopping 4 pain medications. That's a major win, but the right hamstring remains a pain.

I am being told that nerves in my right leg are triggering repeatedly without a stimulus being required. I can briefly reduce the spasticity by doing some opposing muscle group exercises. A one-hour massage on my leg will provide 30-45 minutes of relief. TENS unit is about 1 hour of relief. Cold/Heat provide almost no relief. Oral baclofen remains a joke. I haven't tried acupuncture recently, but before it would provide 1 day of relief. Sitting increases the spasticity, but standing or walking have no impact. I am hoping to get a EMG done in the next month or two. I am also planning on talking to my doctor about possible botox injections for the right hamstring.

I remain thrilled with the pump, but like you would like to get this leg spasticity sorted out.

[hunterd]

I have never heard of what you are asked, but then again I have never asked about it in particular either. I do know that my left leg is more severely impacted than my right but I do not know how much of the dosage is for which leg. I on the other hand am starting to get upper body spasticity, which I have never had. I wish you both good luck in getting your situation solved.

[rdmc]

Thanks for the replies.

Both of you are experiencing what I think is happening with me. One area that is more spastic and doesn't respond as well to the baclofen.

It's a balancing game, especially if you're mobile...too much baclofen and the tighter area may ease, but render the spasticity controlled areas too weak.

Marco...the botox might be worth a go...I don't know if there'd be contraindication between the two meds, but I wouldn't imagine there would be. Your thigh pain seems more intense than what I'm experiencing. I'm like you with massage, works well, but residual relief is short lived. I'm with you, any issues with the pump are nothing compared to the overall relief I've been given.

Hunterd, about the upper body spasticity, I ended up reverting to a dose of 10 mg baclofen, 3 x a day, to ease the upper body, and it helps. What level is your catheter? Mine's at T9 so not much help with upper body issues.

At the time I had the pump implanted I had no upper body spasticity, but progressive disease progress (Richard Cohen quote.)

[bluegiraffe]

Hi rdmc,
I too would never have thought as your physiatrist is, I wouldn't think the baclofen would address one leg differently then the other. Only that one leg would be more spastic and need more.

I don't think there is an issue with getting Botox with the pump, my physiatrist suggested ii if needed a while back.

Rdmc, are you feeling weakness with your dose being increased?
Is it worth upping it more for the one leg, to see if it needs a substantial amount more?
If the dye test doesn't provide more information.

As you all have said, it is an individual balancing act.
I have keep my dose the same for a long time, have some episodes of spasticity at times, but it has not been consistent, mostly during sleep at night (sometimes) and during PT stretching (legs get mad after a while).

Hunterd,
I have only heard of Botox and/or oral baclofen for upper spasticity.
Let us know what you find out.
I'm not sure what position my catheter is at, when I asked my neurosurgeon years after the surgery he seemed to relay it didn't nessessarily make a difference (or I maybe I misunerstood).

[hunterd]

thank you for your reply. I am going to ask the next time I go in for a refill. I will try to remember to ask if a certain amount can be to directed to one leg while another amount is directed for the other leg.

[hunterd]

here is a link that will take you right to Medtronic the maker of the pump. I could not find the answers that were asked, but I may have just overlooked them.Spasticity http://www.spasticity.com

[Kimba22]

Hi rdmc,

Sorry about that leg. Your theory sounds perfectly logical to me. Since the liquid baclofen is in the cerebral spinal fluid, don't know how it would only help one leg? But, with your colorful history, who knows? It's probably a good idea to have the dye test done, anyway, just to make sure all is well with your catheter.

My left leg has always had more spasticity than my right, and nothing has changed there. But, now my left arm/ hand is being affected, and it's always the worst at night (makes sleeping fun - not ) I also take oral baclofen. My pump dosage has been the same for quite awhile now, but probably only because I'm now taking oral baclofen. There are times either leg (or both) will decide to act up more than usual, but since there's no consistency, I haven't opted to increase the pump dosage.

I don't think there's any contraindication for the use of Botox with a baclofen pump (I had Botox for my bladder), although the Botox site does say to let your doctor know if you are on any muscle relaxants. (Which is kind of a no brainer I'd think if it's used for spasticity.). It can be used to treat more than one condition, but there is a limit on the cumulative dose. (Generally speaking, according the Botox site, it's not recommended to have more than 360 units in a 3 month interval. I think that's because of the possibility of developing antibodies.) The larger the muscle, the more Botox would be required to be effective. Depending on someone's response, a higher dose may be used the next time.

Long before I ever had a Baclofen pump, it was injected into a few locations in my back. I have no idea how much was used, but I do remember it didn't do much to help with my spasticity there. It was never pursued any further. (I would imagine it was because the total dose was pretty high the first time.)

Let us know how your catheter checks out, and if you (or Marco) go the route of Botox. Hope you both find something that helps.

[rdmc]

Hey all,

Thanks for the replies.

I am going through with the dye test because there's no reason not to, and since my doctor thinks it's a good idea, I believe her

But I'm still sticking with just increased level of spasticity in the one leg being part of the disease process.

I did an experiment yesterday. We had a neighborhood garage sale, and I love garage sales, even though I never get out of the car...my husband does the actual "shopping"...but still I like viewing the things set out, even if it's from the comfort of the car...the dog likes them too, he sits in the back of the car and sticks his head out the window...although I think he's looking at the people not the goods.

Anyhoo, I wanted to go, but that leg is soooo stiff I didn't see how I'd make it in the car, even for an hour or so. So I popped an extra 10 mg of oral baclofen. Well that did the trick and loosened up the leg to where it would bend and fit in the car...still stiff, but doable (I usually take 10 mg in the AM anyway, so that was a 20 mg dose of baclofen.)

I got thinking and this level of spasticity hit me back in November and they sent me to the ER to have x-rays of the pump (as Kimba said, due to my "colorful history" with the pump.) Everything was okay with the pump back then, and the spasticity seemed to resolve with and dosage change in the pump. I'm to that level of spasticity again, but the dosage change hasn't seem to fix the problem.

As to the other leg getting too weak, when I upped the oral dosage yesterday and got some relief in the bad leg, I felt no added weakness in the good leg. So if the dye test is good, I'll be more aggressive on the dosage front, and ask for more than a 5% increase.

Kimba, sorry about your interrupted sleep. So it seems most of us have added spasticity in upper body and/or increased spasticity in one leg. I will say this, taking the oral dose has not made me sleepy like the oral baclofen used to, attributable, I'm sure to the low dose.

I'll post the dye test info once I have it.

[90stangg]

I have had botox injections after the pump. I was in PT and we were trying to build up one set of muscles, but another group were over powering so we used botox to knock them down a little.

My catheter was placed way up by C4. During the trial it helped with the spasticity in my right arm and also with the hug.

[rdmc]

Hi 90Stang,

C-4 is high...I don't think I've ever heard of one being that high. What made them decide to put it in the C-spine?

I think Marco's catheter is high too, but still in the thoracic spine...am I right Marco?

I'm a T-9 and for about 3 years that's all I needed. It's just recently that I have had some problems with upper body spasticity
.
Glad to hear you were able to combine botox and the pump.

[90stangg]

Hi rdmc,

During the trial I was able to raise my left arm over my head and the tightness in my chest seemed to go away. So the Dr said we were going to put the catheter up as far as they could to see if I could get upper body relief. I'm still seeing good results as far as the arm and chest go. My left leg during the trial and after was, and still is stiff and does not bend very well.

[rdmc]

Well I had the dye test...the pump is in working order, both pump itself and cath. That's a huge relief.

This test seemed a little different from my last dye test. They withdrew some spinal fluid to clear the catheter, they were talking about pushing a bolus, and I'm assuming that was the dye. When it came through on the machine they could see it go up the catheter and disperse from the catheter. The Medtronics tech rebooted the whole thing and told me it'd be about 15 minutes before the med reached the spine. My memory's not the best but I think last dye test was different.

I get home and am trying to get back to my work, plus grabbing some lunch, and some coffee (they had mentioned a possibility of headache from CSF fluid draw and I thought I'd premedicate with caffeine). I'm walking around and noticing I'm walking "speedier" (at least for me) than before the test, I try to lift my leg off the floor and it cooperates. A lot of what was "broken" before I went for the test seems to be "fixed"...at least to a degree.

I called my physiatrist office to report I'd had the test and wondering why from the test I was seeing some improvement. What exactly was the difference between before and after the test, I'm not sure, but something changed, and I'm very grateful for that. I'll talk to my physiatrist tomorrow and see what she has to say.

[Kimba22]

Hi rdmc,

I'm glad everything was in working order, which must be a huge relief! The dye test I had done wasn't like the one you just described, either. There was no spinal fluid draw, nor any rebooting by a Medtronics rep (who wasn't there). All that I had was the dye with the fluoroscopy. Also glad to hear you've noticed an improvement!

I wonder if something was blocking all the medicine from reaching your spinal fluid? (I read crystals can form around the tip of the catheter from the pain medications, but haven't read about it happening from baclofen. ) Or if your pump just had to be rebooted because it wasn't working properly?

Whatever it was, I sure hope it proves to be the fix you needed! Let us know what your physiatrist has to say tomorrow and please keep us posted on that leg.

[Marco]

I want a reboot!!! LOL

RDMC - so glad you appear to be getting relief and experiencing improvement. Wonderful news!