Medtronic Intrathecal Pain Pump for Spasticity
About a year after my spinal cord injury, my legs started to become very jumpy and spastic. It got to the point where I couldn’t pull my knees apart because the muscles were firing non-stop. I decided to get a pain pump, or an intrathecal pump made by Medtronic to help control spasticity and pain.
I was evaluated at the pain clinic in Seattle, and the test procedure worked. The rigid muscles in my legs relaxed. The pump was placed on my right side in the lower abdomen. I’m currently on my fourth medtronic pump. The battery in it eventually wears out and needs to be replaced. The pump is the size of a hockey puck, and can be used to control both pain and spasticity.
I have baclofen (Lioresal) in my spasticity pump for the muscles, and in the past year mixed Dilaudid with the baclofen to control neurogenic pain I was having. It did the trick, and helped relieve some of the pain. I know others will have morphine placed in the pump.
One thing that is alarming about the procedure of placing an intrathecal pump is the cost. About five years ago, I had one replaced by a neurosurgeon for around $15,000. I thought the hospital bill was wrong on my last bill when I saw it was over $30,000. A radiologist placed that medtronic pump. Medical costs are out of control.
If the quality of your life is being effected by pain or spasticity, look into the Medtronic intrathecal pump, and ITB therapy for relief.
March 16th, 2008 at 9:55 pm
I am scheduled for med pump implant on March 24th. I have severe fibromyalgia and have delt with every type of treatment for 20 yrs. The pre-surgery trial for the pump, was a 60% pain reduction. I am looking forward to quality of life improvement, yet very nervous about the surgery and recovery. Could someone enlighten me on those fears.
Thank you Cindy L.
March 17th, 2008 at 8:07 am
Hi Cindy,
I’ve had the synchromed pump about 12 years now. I’m actually on my fourth one, due to battery changes.
The surgery used to be done by a nerosurgeon in my case, but they’ve become so routine, my last pump placement was done by a radiologist doctor.
When I received my first pump, I was allowed to choose which side I wanted. I chose the right. I’m quadriplegic, and my stomach sticks out some, and the pump impression is slightly noticeable.
You’ll have a scar about 6 inches across when it heals. I was showering right after surgery, with the surgery site covered.
If you’ve been through surgery before.. you’ll wake up groggy. My mouth is always so damn dry. They’ll have to regulate the pump, and it’s a matter of increasing the dose. It may take a few days. You’ll feel the effects immediately.
Everyone is different, and I don’t take meds, but I got a little woozy/dizzy feeling with the baclofen. It went away in a few days. Many don’t get that feeling. Oral pain meds do the same thing to me.
I’m happy to see your pain reduction. Hopefully you will have more when the pump is placed and regulated.
I get a refill every 3 months, and have baclofen and dilaudid in mine. It was a lifesaver in reducing spasticity and pain in my life.
If you have any more questions, Id be happy to answer them
Mike
April 9th, 2008 at 4:21 am
I have had the Medtronic pump now for just over a year. Just a little heads up, it may take close to a year for them to find the dosage that helps you the best. At first you will have to go in pretty often until they get you feeling better, then, about every 3 months you will need a fill up.
My pump has been a God send for me!! I have dealt with back pain for so long, and had gotten to the point that I couldn’t even function long enough to cook supper for my family. It took about a year of prodding from my regular physician, mainly because of fear on my part, and now I look back and see how much easier my life would have been if I hadn’t been so stubborn!!
A really amazing feature of the pump, for me at least, is that we have it programed to give me a BOLUS (boost of meds) at 5am every morning, so when I get up at 6am I feel great!!!! (Mornings are always the most painful for me.) I have 2 rods, 6 screws, and two cages filled with bone graft material in my back. Also a total knee replacement, and the other knee of the verge of getting replaced, which now, can be postponed due to the amazing pain relief I recieve from my pump.
I wish all the best to everyone going through the process of seeking a normal quality of life. I know that for me, getting the pump was the best decision I ever made!! (No matter how long it took)
Got any questions, give me a holler.
All the best, Crissy
April 16th, 2008 at 12:29 pm
Hi Mike,
Found your website very helpful. I’m getting ready to get the bac pump. I’ve had ms for the past 10 yrs and have spent the last 5 in a chair. I was wondering where to get help paying for it.(maybe the clinic can direct me) How much do the refills cost?
The pump is sure spendy but i’m going thru with it. I was tested 4yrs ago but i decided i didn’t need it then but now i have alot more spasticity and pain.
Thanks, Bob
April 16th, 2008 at 7:20 pm
Crissy… Thank you for your comments. I’m happy the pump was successful in helping you. I’ve never tried getting higher doses at certain times of the day, but as you mentioned, that is a useful option. You’re right too. It can sometimes take a while to finally get regulated just like you want.
Hi Bob… My pump was paid for by the private insurance I have. It’s expensive, but I don’t dare let it go. This link may help answer some questions on coverage for the pump.
As for refill costs. If you are filling it with baclofen it can cost over $1000 to fill the pump if they use the liquid form called lioresal. I get my drug mixed at a pharmacy that uses the powder form. $200/refill which lasts me 3 months. So there can be a huge difference in drug costs and how they’re mixed.
I hear you about it being spendy. All this medical equipment is so expensive. Best of luck!
Mike
May 13th, 2008 at 9:34 am
I have the pump and I am due for a refill. I prefer not to go into the physician office for the refill. Does anyone have recommendations of a facility in the Philadelphia area that sends nurses to the home to refill?
May 13th, 2008 at 3:47 pm
Hi Brent,
I’d start by asking your doctor if there’s a group they’d recommend.
May 26th, 2008 at 8:09 pm
I was fused from L5 to S in 2002, hrdwr removed 6 mths later, 6 mths later fusion failed, was fused L5 to S again, 6 mths later hrdwr removed. Nerve damage pain worse after each surgery. Take 10 mg meth & 20mg ER Ox and barely make it thru day (20 to 30 mg Ambien nightly). I’m desperate & considering the pain pump. 60 years old male. Have spent 20 hrs a day lying in bed (6 years) due to being horizontal decreases pain somewhat. If I could take a 2nd afternoon 20mg ER Ox, I could be comfortable, but years of constipation make it impossible even though I drink tons of water and eat only crappy high fiber food and laxitives. From what I read of other people’s problems, wouldn’t I be able to be on a low pain pump dosage. The problems people have after surgery w/the pump scare “H” out of me. Help?
May 27th, 2008 at 9:37 pm
Hi,
I am now working to have a pump installed. I am worried about the “hockey puck” size and how it will interfere with sleeping and playing with my 6 year old boy. I don’t have cages or screws, but I have many compression accidents (landing on derrier) and lots of never pain.
I am interested in finding more information on the subject of implanting this foreign device. Maybe they can lipo suck my flabby tire so that it is less noticable
. I see the potential side effects and problems and wonder what are the chances? I am glad to hear about long term use of the device. Not so happy about the year to dial it in or the two to three year battery problem.
I will return when after I get the device to report my progress. Thank you providing an open forum.
May 28th, 2008 at 7:19 pm
Gino,
If you’ve got some “spare tire” there already, you’ll probably just see a small bulge. Unless you’re really skinny, it doesn’t stick out that far. As for lipo.. good luck.. lol.
Battery length is a crapshoot with everyone, but the better the technology gets, the longer the batteries should last. Also, everyone is different in getting regulated. It may be fast or slow.
May 28th, 2008 at 7:36 pm
Marly,
Those are some good questions, and I don’t have the answer to all of them, but I can tell you my level of pain medication is very low, and I feel the difference with small adjustments.
You’ve probably built up some type of tolerance to the oral meds. An advantage of the pump is that the medication is directly introduced to the spinal cord. The spinal cord carries those pain signals to the brain. Hopefully that direct dose can work quicker on those pain signals.
I’m not sure about constipation issues.
As for complications after, everyone is different. If you’re able to have the initial test done to see if you’re a candidate, and get satisfactory relief, you’ll have to weigh the options.
June 21st, 2008 at 1:37 pm
Generalized Dystonia
I have a Bac. pump (5 years now) and I have read that my model and several other Medtronic pumps were recalled in Mar 2008. I have complained of various problems for almost a year. This is actually my 2nd pump and I have had previous problems with the Cath.
Anyone else with similar complaints?
I will probably get the next generation pump witin the next several months.
WARNING (GRAPHIC EXPLANATION)!!!
Currently, I have severe nausea, and I’m going to the bathroom like crazy, I’m also puking (no, I don’t drink nor am I sick). I think it could be related to a bac. leak.
I have been down this road before 5 years ago.
Anyone affected by the March 2008 recall?
256 468-0547
June 21st, 2008 at 4:15 pm
Hey Vin,
Nausea is definitely not fun. I’ve been there.
As for having a catheter leak… I had a leak a few years ago. It was found after my doc had a dye test done. Have you had this test? When I had the leak, it contributed to a definite increase in my tone and sweating. No nausea. I have had nausea though from too much baclofen. Everyone is different. Could you be getting too much?
As for the March recall…
http://www.medscape.com/viewarticle/571950
It seems the biggest problem caused are “inflammatory mass (granuloma) formations at or near the distal tip”.
“In a letter to healthcare professionals, the company noted that the reported incidence of inflammatory mass with intrathecal drug delivery has increased 5-fold from 2001 to 2007 (0.49% vs 0.1%) and is expected to continue increasing. Symptoms most commonly include decreased therapeutic response/inadequate pain relief (33.5% of cases), pain (32.6%), and neurologic deficit/dysfunction (17.4%).”
Hope this helps.
July 30th, 2008 at 8:45 am
My Husband has a medtronic morhphine pump that worked well for the first year and a half, but now NO relief. Is it possible to build a tolerance to the drug? Also, I have been reading the posts about dilaudid. Can this be used as an alternative to morphine? Will he withdrawal from the morphine if they switch to the different medicine? Any help would be appreciated. He has had 3 lamis, 1 microdisectomy, a dorsal column stimulator (also medtronic) that is currently not working due to slipping from the nerve, and deals w/constant sciatic pain due to permanent nerve damage… not doing too well… Thanks so much!
July 30th, 2008 at 8:57 am
Hi worriedwife,
You can definitely build a tolerance to the drug. I’m using dilaudid as an alternative to morphine.. so Yes.
If the pain came back suddenly, you may want to ask for a dye test to make sure the catheter doesn’t have any leaks.
The first step his dr. will likely suggest is increasing the morphine. If after a few increases.. let’s say 10% per increase, there’s no change, they should look at the other alternatives mentioned.
Hope for the best,
Mike
July 30th, 2008 at 9:19 am
Mike, Thank you so much for the response. I wasn’t expecting to hear anything so soon… and POOF, there you were:) He has had the dosage increased twice, both a 10% increase. I’m not sure how much more they can go up on it, but the info you provided is extremely helpful. He has been seeing his neurosurgeon for pump fills, but has been referred to a pain mgmt dr.. We are scheduled to see him tomorrow morning. Just knowing that we have another option is a huge relief! We were wondering if the pump had just run it’s course and was done, as so many other treatments have…Now, we can have some hope. Thanks again, Worried Wife
August 8th, 2008 at 2:14 pm
My mom just had an ITBP placed and I can’t say that I recommend the thing. She may be be one of the few that has had this many problems but they have not been good! She had a stroke about 2 yrs. ago and so they thought that this would help her. But now she has had such distress with it, she wishes she had never gotten it. She had a spinal fluid leakage and it’s made her have severe nausea and vomitting and dizziness and headaches. She has also had sharp pains running down her spine. I don’t call this a “great” experience.
August 26th, 2008 at 11:32 am
to everybody who has the pump or is considering getting one. I am the very first person to ever have one here in the U.S. that is an interthecal morphine pump. I had been in a care accident back in 1989 and suffered a broken back and neck and am being held together by rods and pins. I had immense pain and then the pumps came along. I thought this was the answer to all my problems. I had not worked in almost ten years as I was basically bed ridden. I first got the little pump that had to be refilled like every six weeks or so, then when the new pump came out, my doctor was quick to replace the small pump with the larger one to go more time between refills. Well little did I know that a month after I had this new pump put in, the FDA recalled the pump they put in me for various reasons. Mostly that it was not working correctly and had some delivery problems. Over the past two years, I have been in the hospital for various complications of my heart stopping, being paralyzed, migraine headaches which I had never suffered before this last pump was put in, episodes which presented as major stroke symptoms, but were indeed not strokes. I want to tell anybody out there that although this may be the answer you are looking for to your pain, and it did indeed help me to the point where I was able to open my own business and have a thriving business yet today, however, be aware, make sure that you investigate this option completely and know what you are getting into. The pump may be the answer, but nothing comes without side effects and the ones I have had lately are life threatening. make sure your pump does not get below 5mg. before next refill as the pumps are not accurate after this. Also make sure your doctor is placing a pump that is FDA approved and make sure that your doctor follows all protocol by Medtronic for filling and refilling of the pump. Never allow your doctor to get your medicine from different labs due to convenience. Once you start with one lab, that must be the lab your meds come from everytime. If not, you could be in big trouble as every lab makes their medicine differently and at diffenent strengths. I am at the point where I am going to have my pump turned off and possibly taken out and go back to orals for a while till I decide what to do. I am very scared at the side effects I have been having and don’t feel that the pump is doing what it should be doing at this time. I feel the pump has a mind of it’s own and pumps what it wants to and is not exact as my pump has gone empty five times now before the rescheduled refill date. So something is seriously wrong and thus causes me to have these central nervous system breakdown or problems. I was always an advocate for the pump. NOT ANYMORE!! be careful and really think it through. Plus any body seeing a pain management dr. should be able to have the pump installed by that dr. not an anethesiologist. Make sure your Dr. installs the pump and keeps and eye on the catheter as mine has come disconnected from the pump twice now and I had to have additional surgery to fix it.
September 11th, 2008 at 11:46 am
I am a 58 yr old female that suffers from cronic back pain. I had titanium cages & fusion on L4-5 in 2002. I have since had continual pain,L sided neuropathy & many scripts for pain meds & muscle relaxers.MRI’s show slight bulge above & below but Doc says no surgery needed. I have been given the option of getting an interthecal pump….I would be grateful for anymore info I can receive before I make this decision.
September 27th, 2008 at 4:16 pm
Hi everyone, after reading most of your stories, my hope for at least 50% of pain relief for my mom might be possible. We are celebrating her 80th birthday today and i hhope i can get her up and convince her to go. My mom suffered 2 strokes and has lung cancer. She also has pretty bad arthritis. She is in constant pain in one or more areas. The strok left her with spasticity pain and then there is the arthritis. She is on all sorts of oral pain medications. Non seem to help. She get constipated from all the narcotics and sleeps most of the time. She states she is too tired to get up to eat. The pain physician we saw suggested the pain pump after hearing how unsuccessful other meds were. She goes in on monday to have the pump inserted. We consider this her last hope for some pain relief. At least enough to enjoy what time she has left with us. So thanks everyone and wish her good luck. Ill up date all of you after we get it done.
October 21st, 2008 at 3:31 pm
I’m closing comments for now.
We’ve got a good group of comments regarding the pros and cons based on personal experience. No medical device is perfect, and every body is different, reacts different, and can change. Talk with your doctor to determine if it’s right for you.
Hope some of your questions were answered. Visit medtronic.com for more info.
Mike