Baclofen Pump: Miracle and/or Marvel? Yes!

[Marco]

What kind of spasticity do you have in your upper body?

My shoulders were rotated in making me look smaller than I am. Once the spasticity was controlled my shoulders went backwards, opening up my chest and making me appear bigger. The spasticity also decreased my nerve sensations; I could feel general pressure, but not touch. The spasticity had basically started to corkscrew my body. My arms were always tight and stiff with some pain, but nothing like the lower body.

Practical ways the spasticity impacted me

• The muscles in my mouth were so tight/spastic that I had a hard time speaking. It was almost like I stuttered, because I really had to push the words out. Having a conversation was a continual drain and I would be wiped out afterwards.
  
• A bus driver recently commented that he thought I was "always mad" because my face was scrunched up. He said he was confused because, "my words did not match my face." Meaning I was not cursing at him or being angry, but my face had a perma-grimace.
  
• My chest had spasticity and I was restricted to shallow breathing. Once the spasticity left, I could feel my chest and my breathing normalized.

Motor Skills -

• I could not cut a steak for a long time. I would either drop the steak, the knife or both. A week after the surgery, I was able to cut a steak (still work).
  
• Typing. I worked with computers for nearly 20 years. I could type in the 80-90 wpm range. Spasticity limited me to about 8-9 wpm. Once the spasticity left, I could type faster with fewer errors. I'm not near 80 wpm, but the difference is obvious.
• I went to elastic laces years ago. This was necessary because I could not reliably tie my shoes due to fine motor skill deficiencies.
  
• Strength - I had a hard time opening a water bottle. Now, I can open them without much effort. I still need to work on strengthening and increasing the endurance of my muscles, but it's infinitely better than before.

[Kimba22]

How did the Dr. know where to place your catheter tip in the spine?

Most of my spasticity is in my legs, but I do lean over when walking. Lately its been difficult to lift my arms over my head to reach in the cupboard or wash my hair.

I am going for MRI of my spine and brain with and w/o contrast, ordered by the neurosurgeon. I have another apt with him on Jan. 15.

I do feel he is being very thorough, but I just met him.

Hi ijustcallit,

I was told by my current doctor (who's specialty is pain management/ anesthesiology) the tips of the catheters are usually placed in the lower back, so it keeps them bathed in spinal fluid. He said when it's placed higher, there's less spinal fluid surrounding them, and crystals can form around the tip of the catheter. That can compromise it. According to my physical therapist, the vertebrae are spaced apart a bit more lower in the back, which explains why there is more spinal fluid there. http://www.mayfieldclinic.com/PE-PUMP.htm

Does your doctor (is he/ she a Physical Medicine & Rehabilitation Dr, who also also specializes in Pain Management?) know about your arms? Spasticity can worsen over time.

My hands and arms are sluggish/weak. Right side is worse than the left side.

This sounds like something you need to address with your PM&R doctor. They could just get weaker with intrathecal baclofen, especially if the dose needed to help your legs is greater than what you need for your arms.

I wonder if T9 is the place that is usually recommended for the catheter, since rdmc has hers in the same location? Mine was placed higher, to help with my back. I was told by my physical therapist certain locations address more nerve bundles than others, so my guess is that has something to do with it, too.

Here is some information (and diagrams) about the spine:

The spinal nerves carry information to and from different levels (segments) in the spinal cord. Both the nerves and the segments in the spinal cord are numbered in a similar way to the vertebrae.

http://www.apparelyzed.com/spinalcord.html

Here you'll find another diagram of the spinal column : http://www.makoa.org/scimap.htm

I didn't have any spasticity in my arms when my catheter was placed with my initial surgery, but do have it in one arm/ hand now. (Mine was placed high because of back spasticity, but my physiatrist still did not want it to affect my arms). I also now have weakness in that hand. Since my pump's placement doesn't have any effect on that arm/ hand, I also take oral baclofen. If that no longer helps, I will need to consider Botox.

Here's some information regarding catheter placement that will include the arms: http://www.ncbi.nlm.nih.gov/pubmed/16955045

Please keep us posted about your surgery and where your doctor recommends your catheter is placed. Best of luck

[Kimba22]

Kimba,
Why do you have to make me cry? That's so unfair! Going into the procedure I knew they could put morphine (my current pain medication) into the pump. The doctors were hesitant to do so because every medication added makes it trickier to control dosing. Since the medications mix there is no way to increase on medication without increasing the other. My medication was increased from 50 to 300 micrograms, so if morphine had been present I would have also been receiving 6x the dosing. No bueno! Morphine is also acidic and can be hard on the pump causing premature failure.

Hi Marco,

Awww ... I'm sorry. I found it interesting that you said morphine can be hard on the pump. I've also been told that is the only pain medication that is approved by Medtronic for the pump. Once, dilaudid was added to mine. Well, that turned out to be a miserable experience. (Never had it before.) I couldn't stay awake, which was a good thing, since when I was awake all I did was throw up.

My doctor told me it was a very small dose, but might give some idea if it made any difference with my pain. (I still have chronic back pain due to spasticity, that we haven't been able to address effectively with the pump). Sure didn't seem small to me! The worst part was that my doctor had gone out of town, and none of the other doctors in the practice would see me! So, for 10 long days I had to live with the medicine infusing into my body ...

Now I know better; I should've just gone to the ER.

And you are 100% correct about pain management doctors. My pain management doctor lost his mother, with MS, about 2 months ago. The second he found out I had MS he hugged me in the middle of the intake evaluation. Since that time he has hugged me every time he has seen me. His mother was not in good shape over the final years of her life. Multiple times per month, the doctor would drive over 14 hours to visit her. Beautiful! I cannot wait for him to see me, but it will be bittersweet because of the loss of his mother.

That's so sad. It's comforting when a physician is willing to do that, in turn showing that do they care about what we are going through. That was amazing what your doctor's mother's doctor did for her! I'm sure it will be bittersweet for him, but God puts people in our lives for a reason. Because of him, you've had an amazing transformation. It will give him joy to see what the pump has done for you!

Recently, my PCP also hugged me. His father-in-law, who was also not in good shape due to MS, died earlier this year. My MS Specialist has also gently placed his hand on my shoulder (you'd have to know him to realize the significance of the gesture), after some real challenges I've faced, thanks to my MS.

Please remember the trial dose is only 50 micrograms and the actual post-surgical dose could be much higher. Mine is 300 micrograms so the trial dose was only 16% of what I truly needed.

There can be up to 3 screening trials, with bolus doses done in increments up to 100 mcg, depending on a patient's individual response. (My initial screening dose was actually higher than 50 mcg, which my physiatrist decided to try based on the amount of spasticity I had, despite all the oral antispasmodics I was taking). Obviously, your doctor realized it would work for you after only a 50 mcg screening dose, even though the results did not seem "stellar" to you.

Screening phase
Test bolus: 50 mcg intrathecal by barbotage over <1 minute; if inadequate response within 8 hours, 75 mcg 24 hours later; if still inadequate, 100 mcg 24 hours later
Patients who do not respond to a 100 mcg intrathecal bolus should not be considered candidates for an implanted pump

http://reference.medscape.com/drug/l...lofen-343335#0

Because the pump infuses baclofen over the course of 24 hours, unlike the bolus dose given during the screening trial, the dose received via the pump can be much higher.

Post-Implant Dose Titration Period: To determine the initial total daily dose of LIORESAL INTRATHECAL following implant, the screening dose that gave a positive effect should be doubled and administered over a 24-hour period, unless the efficacy of the bolus dose was maintained for more than 8 hours, in which case the starting daily dose should be the screening dose delivered over a 24-hour period. No dose increases should be given in the first 24 hours (i.e., until the steady state is achieved).

Any changes in the programmed dose are always done slowly:

Very often, the maintenance dose needs to be adjusted during the first few months of therapy while patients adjust to changes in life style due to the alleviation of spasticity. During periodic refills of the pump, the daily dose may be increased by 10-40%, but no more than 40%, to maintain adequate symptom control. The daily dose may be reduced by 10-20% if patients experience side effects. Most patients require gradual increases in dose over time to maintain optimal response during chronic therapy. A sudden large requirement for dose escalation suggests a catheter complication (i.e., catheter kink or dislodgement).

http://www.drugs.com/dosage/lioresal-intrathecal.html

Maintenance dosage for long term continuous infusion of LIORESAL INTRATHECAL (baclofen injection) has ranged from 22 mcg/day to 1400 mcg/day, with most patients adequately maintained on 90 micrograms to 703 micrograms per day. In clinical trials, only 3 of 150 patients required daily doses greater than 1000 mcg/day.

http://professional.medtronic.com/pt.../#.VIfRt4xOnMJ

Quote:
Q. Does the pump run out of medicine? How long does it last?

Medication refills are also required based on your dosing. For example, your pump holds only so much medicine. You take that total medication and divide it by your daily dose, and then you need a refill. Most people get their pumps refilled from 1-3 times/year.

I forgot to mention earlier that refills are also subject both to the size of the pump (40 ml or 20 ml) and the concentration of the liquid baclofen used.

Q. Can you actually see the pump?
A. Nope, all the components are placed under the skin, but you may see a bulge under the skin. The pump comes in two sizes (20 & 40 mg), but are very close to the same physical size. The pump may be more noticeable on thinner people because they have less room beneath the skin. The pump, however, is made of titanium so you may set off metal detectors, alarms, etc.

The first pump I had was 40 ml. On me, it was very noticeable. Many times over the years my doctors have questioned why that size was even implanted by the neurosurgeon (could be his reasoning was so I wouldn't need it refilled as often). The suggestion by my doctors ever since was to go down to 20 ml size with my next pump.

My doctor told me the reason that size is not half the thickness (still the same diameter) of the 40 ml pump is because of the electronics housed inside the pump. I was shown both side by side before my second surgery. The 20 ml pump is still thinner, but only by about 1/3. The smaller pump is what I had implanted the second time, and it has made a difference in the way it looks and how my pants fit.

And to date, I haven't set off anything with mine.

There are two different alarms on the pump. One is a 1 second single alarm (the non-critical alarm; which means the drug is getting low and needs to refilled asap). The other is a 3 second dual alarm (the critical alarm; which means the drug has stopped flowing). The critical alarm went off on rdmc before, which was followed by baclofen withdrawal. I think her catheter became dislodged from her pump. She said she had to be put on IV benedryl, because of one of the withdrawal symptoms, itching.

The sounds of both alarms can be heard here: http://www.medtronic.com/patients/se...t/#pump-alarms. (This link also provides good information for anyone who has/ or is considering the pump.)

They placed my catheter at T4.

Is it possible it was placed at C4 instead? I think that placement would yield results such as yours on the upper body (which are absolutely amazing! ).

It's been a few years since I was told the exact location of mine , but I believe it's at T4 (my physiatrist also told the neurosurgeon where to put it). But, it doesn't have any effect on my arms. My physiatrist wanted it placed it there because he didn't want it to have any effect on my arms. Back then, they showed no signs of spasticity whatsoever.

My doctor's goal with placing it that high was to help alleviate my back spasticity. Unfortunately, my legs would always get too weak whenever we tried to increase the intrathecal baclofen dose so it would help my back. But, it has virtually eliminated my MS hug (sure don't miss that!). I was told it's because the intercostal muscles (between the ribs) aren't going into spasm anymore. My last doctor did a fluoroscopy on my catheter and said he'd never seen one placed that high before.

At times, mine still hurts (which is why my doctor did a fluoroscopy), and did not see any problems. But, a big part of that has to do with the spasticity I still have there. Another part has to do with irritating the location whenever I bump it against certain chair backs. I hope once yours has healed, it won't hurt anymore.

Here's a little mnemonic device I learned that gives the approximate location of the spinal cord:

C4 = C is 4 clavicle
T4 = T is 4 tips of nipples
T10 = Think of a cute little belly button (for the 0)
L1 = Lifeguard tan line (think of where the top of swim trunks would be)

Like I shared with ijustcallit, my current doctor told me that crystals can form around the tip of the catheter (I'm assuming that's from the medicine) when it's not placed lower in the back, because it's not being bathed in spinal fluid. After 7 years, though, mine is still working fine and I have no intention on having it moved unless I have to.

One suggestion...if they gave you a elasticized brace/binder, wear it. It helps secure the pump in the right spot while you're healing and your body is building up scar tissue to keep it in it's "home"...the pocket the surgeon made for it.

From the SynchroMed II Infusion system patient manual (p.48) :

During an MRI, you may also notice a slight tugging sensation at the pump. An elastic garment or wrap will reduce the tugging sensation.

I would suggest wearing the binder (ace banadages will also do) for at least your first MRI, especially if it is done within the first few months of the pump's implantation, when scar tissue hasn't had a chance to completely form around the pump.

Another member, Hunterd, said his moved because of an MRI he had shortly after it was implanted, and it made refills challenging for the life of his pump.

I wore mine during the first MRI I had almost two months after my second pump's implantation, and had no problem during/ afterwards. Then I needed an emergency MRI a few weeks later, and didn't wear my binder. Ever since, the top part of the pump, on one side, has been sensitive and will sometimes hurt (that seems to be happening less, so hoping it eventually goes away). For later MRIs, after scar tissue has had a chance to form, you may/ may not care to wear one. (I never felt anything at all with my first pump.)

Sutures are used to keep the pump in it's location until the body's scar tissue encapsulates and secures it in place, but it's possible one (or more - which happened to rdmc) can break. Her's then migrated out of the pocket, became a "floater," and eventually (despite wearing a binder all the time) migrated to the bottom of her pelvis (ouch).

I was never given a binder after my first pump was implanted, and because all my sutures held just fine (my doctor said they were still in place when he replaced my pump) until scar tissue formed around it, it never moved. I was also careful to follow all post-op directions. (Everyone should read the patient manual they are given) I was only given a binder to wear the last time because I had swelling (developed what was called a seroma) after my surgery.

Here are also some good videos for anyone considering this therapy: https://professional.medtronic.com/p...m#.VHIVDYxOnMI

Good luck with all your endeavors next year, Marco, I'm sure you'll be wonderful with the whatever advocacy work you do. As far as being an ITB Ambassodor, you are doing a great job spreading the word through MSWorld already! http://www.medtronic.com/patients/se...oups/index.htm.

Thanks for sharing your story here. I'm sure you will help many of our members who might benefit from the baclofen pump. I hope the information I shared only adds to your thread.

Best of luck with more rehab, too. I can't wait to hear how much more you improve over the next several months! (I also hope you reach your dance goal for 2016!)

Wishing you only the best ,

[ijustcallit]

Kimba22 - Thank you very much for the information!

The Dr. who did the pump trial and referred me to the neurosurgeon is a Pain Management/Rehabilitation doctor. Seems very knowledgable and confident. He works at a big MS clinic in my area. I like him.

I go back to the neurosurgeon on Jan. 15 with the MRI films. I am going to ask about the tip location. I like him too.

Thanks again for all the information. I'll let you know how it goes!

[Marco]

I don't have much time to respond to Kimba's awesome post. I did check the email and the PM&R doctor definitely put T4 on the email he sent me. I understand where T4 is, but could only post what information I was given. I'll verify with him at my next appointment. If it's a critical item for someone, I can call the office.

[BobOP]

Hi All

I am sorry I haven't been around lately...that pesky work keeps getting in the way...LOL

Marco, I am so glad that the pump has worked out well for you. In my experience with the pump, I can say things will keep getting better for you.

ijustcallit, it is nice to meet you. I will let you know my Baclofen Pump experience.

I have been on ITB therapy since April, 1999. I had my 4th pump implanted in July of this year. I have a 40cc pump. I get a pump refill about every 4 & a half months. The longest you can go between refills is 6 months. This is due to the shelf life of the liquid baclofen.

My current dose is 117 / 119 micagrams a day. With the pump being programmable, I get more at night to help with night spasms. My dose is 117 from 7am-11pm & 119 from 11pm-7am.

I have had the same catheter since 1999...if it aint broke why fix it..lol. When I got my latest pump, they did x-rays to check to see how my catheter is. They also ran a dye test to make sure everything was flowing nice through the catheter.

Yes, I did go horseback riding the day after I got my first pump replacement. I am unable to do that anymore per the farm director where I ride...LOL

Since, they didn't touch the catheter, getting a replacement pump is much easier for me. If you can call a surgery easy...LOL

Take Care, Bob

[bluegiraffe]

Hi,
I too have had my pump almost 4 years now!
I have the smaller pump and get the concentrated baclofen that allows me to get the six month refills.

I had no restrictions at all after my surgery and move in very awkward ways.

The pump has been a 'miracle' for me as well! Good to hear it is helping many!

[ijustcallit]

Blue Giraffe - How did you get the smaller pump, may I ask?

The PM/R doctor said skinny kids get the small pump. LOL Supposedly the big and little pump are the same size, the small one is thinner. If I can, I'd prefer the smaller one. And I am NOT skinny. Something I will bring up with the neurosurgeon.

May I ask, what your dose is?

[Marco]

Blue Giraffe - How did you get the smaller pump, may I ask?

The PM/R doctor said skinny kids get the small pump. LOL Supposedly the big and little pump are the same size, the small one is thinner. If I can, I'd prefer the smaller one. And I am NOT skinny. Something I will bring up with the neurosurgeon.

May I ask, what your dose is?

The PM&R doctor left the decision between 20 & 40 ml pump to me. I selected the larger pump to increase the time between refills. Not driving, I am required to take the paratransit bus that turns a 20 minute drive into a 2.5 hour bus trip. I now realize the pump may get rid of my pain medications, and related monthly trips to the doctor and pharmacy. This may save me 22 trips/year which is enormous to save time, energy and life.

With the 40 ml pump, I have a noticeable abdominal bulge. It almost looks like I am poorly concealing a .45 caliber/1911 handgun. If I had to do it over, I would go for the smaller pump, but I made the best decision at the time. In another 6 years, I'll swap to the smaller pump, but for now I am so thrilled to be out of a wheelchair, that the bulge is a great reminder of the miracle!

[Eileenf]

Marco,
I just read about your bacolfen pump. I'm very happy for you and your wife. Very glad you found treatment that works for you. My question is since you wrote about the positives of the pump are there any negativies ? Also, I'm on morphine patches, bacolfen and flexeril. My anathesolgist talked to me about a pain pump before but, I was not ready for that conversation yet. It is better than taking all that meds per day? Thank you, Eileen

[Marco]

Eileen,
Thank you for your response. I'm still in the honeymoon phase with my pump and I have had remarkable benefits. I will gladly admit to having a bias in favor of the pump.

The obvious negatives are the post-surgical recovery process, hospital stay and potential financial obligations. The pump can malfunction in a number of ways. The pump has to be replaced every 5-7 years. The pump also has to be refilled every few months. I am finding that certain garments don't fit as well, and some items are painful. I guess that could be a positive if you need another reason to purchase clothing. I'm pretty sure some women would have a harder time dealing with an abdominal bulge than others. I now have to carry around a medical ID card, have certain physical restrictions, scuba diving is prohibited, as are MRIs above 3T.

Since the majority of my issues were spasticity related, the baclofen pump has been a Godsend. My pain management doctor is already tapering off my pain medications; we hope to eliminate them all together. Since the pump medications are not metabolized, much smaller doses are used. The smaller dose can significantly reduce side effects, while proving superior benefits. I physically could not tolerate Baclofen doses high enough to give me this level of improvement. The pump also gives a continual medication dose and you never have to remember to take a pill. If you oversleep or go on vacation, your medication is still working. The pump can also be configured to give you more medication at specific times of the day. For example, my spasticity normally increases as the day goes on, so the pump has been configured to give me a slightly greater dose at night.


If you have any additional questions please feel free to ask! Thank you again for your response and have a blessed day.

[BobOP]

Hi Marco

I wish you continued success with the pump.

I can say since I have had the pump, I have done whatever I have wanted to do. In fact, I became a certified scuba diver 2 months. after I got the pump. My Copaxone rep, at the time, set up a certification class for 6 of us.

We were in contact with Medtronic before I started my check out dives. Medtronic said that my pump was rated for 1 atmosphere. That's what we went with. I had no issues with the pump at all.

The last I heard that the current pump is rated for 2 atmospheres

I have also done tandem hanggliding @ 2,500 feet. No problem there. I do know that sky diving is out of the question due to the air pressure at that height.

Take Care, Bob

[bluegiraffe]

just allot,
Sorry for the delay.
I just asked for the smaller pump.
As mentioned earlier my concern was needing to have more frequent refills, but after the first refill my physiatrist suggested the higher concentrated baclofen that allows me to need refills just as the larger pump size - so no difference between the two!

I am at 112 mcgs currently.

Hope this helps.

[bluegiraffe]

The last post is to 'ijustcallit' (spell check changed )

[rdmc]

Marco,
My question is since you wrote about the positives of the pump are there any negativies ? Thank you, Eileen

Hi Eileen, Marco, et al,

...been awhile since I checked in on this thread.

There can be complications, and problems arise from the pump. I seem to be the unlucky one and have had a number of "negative" issues over the years I've had the pump, I'll elaborate in a minute, however, even if I went in knowing the negatives would occur, I'd do it again in a heartbeat. The positives soooo outweight the negatives.

Negatives for me have been those freakish kind of things that my neurosurgeon says he's never seen happen before (and he's the only pump neurosurgeon around, so I figure I have a quirky body.)

First surgery was a cinch. No problems quick recovery, wonderful results.

But about 6 months after my first surgery, I woke up one morning and it look like I was "half" pregnant, i.e. half my abdomen was swollen to the size of a cantalope, the other half fine.

I called for an appt with the physiatrist, they were going to fit me in that afternoon, but the swelling was increasing so they sent me to the ER. Long story short, my catheter had come loose from my spine and had worked it's way back to the pump. On imaging, it look like a snake coiled up beside the pump...consequently it was pumping baclofen into my abdomen. Wasn't hard to diagnose, first x-ray, then CT and they knew the problem. (I was the star of the ER that day, all the staff wanted to take a look )

I tried staying home just using oral baclofen, but the withdrawal symptoms were too hard to manage so I was in the hospital about 4 days on benzos until the doc fit me back in his surgery schedule. Pump was reimplanted, catheter place and secured.

I was ready to be released a few days after surgery, and the hospitalist who would be discharging me took one last peak at the abdominal incision site. It had looked fine that morning, but by the afternoon it was obvious it was infected. I was told they'd have to remove it if the infection (MRSA) made it's way to the pump, but fortunately, it was contained to MRSA cellulitis so I was able to go home and use Vancomycin through a pic line for the next six weeks. Of course with any in hospital surgery the risk of infection is there, so I do not fault the pump on the infection, it just happened.

So I was a couple years with no trouble, and then my pump decided it wanted to live in another part of my abdomen (it broke loose from it's pocket and moorings.) As I told a friend, if my abdomen was a map of the US, it was living in Idaho, but decided to move to Southern California. It created a lot of muscular pain during the move, but the pump kept functioning. Day surgery was scheduled and the neurosurgeon made a new home for the pump in North Dakota...where it seems to be living happily. HOWEVER, I wear a binder almost all the time, my MS has weakened my muscles and my fascia, and I don't trust my body to keep the pump in place, so I wear the binder, more for my peace of mind though.

No other problems since them, other than quite an upswing in dosage in the last year or two, but that's because my spasticity has decided to be more bothersome. Wonderful part is I just go into the pump doc and she ups the dosage. I also went to a higher concentration and instead of going in every 6 weeks for refills, I go ever 5 months now. I'm at around 150 mcg.

But as I said before, if I had to have revision surgery over and over, the relief I get from the pump would be worth it.