I'm requesting advice in lieu of tracking down my now "world-famous" doctor who implanted my Medtronic Intrathecal Pain Pump.
BACKGROUND: Had Medtronic intrathecal pain pump implanted in January 1998 by Dr. Joshua Prager (UCLA). I can't say enough GOOD things about the pump's overwhelming positive effect on my rehabilitation from failed spinal-fusion surgery and intractable, severe pain. If anyone's interested in the details of how the pump changed my life, please ask.
CURRENT SITUATION: Pump has been turned off since 2002. Why? I wanted to take an international job in a country where pump refills were not available, so I successfully switched to oral medication (MS Contin). Pump is still inside my stomach, but switched off. It doesn't bother me, but I'm worried about long-term dangers (if any) of the pump sitting in my stomach and a catheter inside my spine.
REQUEST: Are there any immediate dangers of pump remaining inside me? What are the risks of having it removed? Can it remain inside me with no complications? If I choose to have it removed, can any competent surgeon take it out, or does it take a specialist who understands Medtronic devices? Any other commentary or professional advice would be appreciated.
I'm sorry I have no advice for the removal, but I was looking for the details, of how it worked, and how it changed your life. I am 20 years old, (and although not quite ready for the pump yet I want to know the details) and I have had chronic back pain for 5 years now. I have had every diagnosis from "she's making it up" to she has a spine tumor. They finally diagnosed me with Scheuremann's disease (which is a disease that begins to fuse an area of your spine, once the fusion of that are is complete the pain goes away) unfortunately Scheuremanns disease didn't start until I was almost done growing, so once I stopped growing, the disease stopped progressing, so I was stuck with my T10-L1 fused half way. The front of my spine was fused, but the back wasn't. SO 5 months ago they fused it, and told me it may help, it may not. Well so far I haven't seen any improvement and have actually had my dilaudid dosage raised. I have been on painkillers for at least 3 of those years. The other 2 I was on ani-inflammatories and arthritis meds. I have had physical therapy, braces, medications, bio feed-back, facet injections, steroid injections, everything. But I have never had one bit of relief! Except for when I've been under anesthesia, and asleep. So I guess these are my questions:
1. Where is the pump implanted? Is it implanted in an area depending on where the pain is? Where is yours implanted?
2. How is the pump implanted (are you under general anesthesia, where is the incision made, etc), and how long is the recovery after? Is there a hospital stay to get the dosage right?
3. How does the pump work, do you fill the pump, or does a doctor do it?
4. Does it get in the way of everyday life? How much is outside of your body and how much is inside?
5. What kind of medication goes in the pump? Do you still get all the side effects of the medications, like nausea, vomiting, etc?
6. Can you see where the pump is when looking at your stomach? Like the shape of a circle or something?
7. DO you get more relief from the pump then you did from the oral meds?
8. On a scale of 1-10 what was your pain level on oral meds? On the pump?
Sorry to bombard you with questions, but I'm so sick of this pain already and sick of having to take medications every 4-6 hours that make me sick to my stomach, give me headaches, make me dizzy, and without it the pain is unbearable!!!!!! Thanks for the answers in advance!
any foreign device in your body can be subject to infection. If it has been off for 4 years, it is not hard to take it out.
A general surgeon, or pain management doc who has experience with Medtronic implants can do it for you. It is usually quick and simple to remove.
Hi Over 50, There really is no medical reason to have it removed, it would purely b a matter of asthestics and comfort if it stills gets banged around from time to time, My pump some how ends up being a ledge that grocery bags sit on, other than that it really doesn't get in the way. As far as removing the actual pump, anyone could do that, and disconnect it from the catheter. However removing the catheter from your spine requires an experienced doc that has implanted, chaneged, and removed pump caths on more than one occaision. THere are things to look for like a granuloma at the cath tip in your spine that may need to be dealt with, and that's something your general surgeon isn't qualified to do.
For Ashley, the actual pump, It's implanted just under the skin, it's not in your abdominal cavaty under the muscle wall, it'sd where they do liposuction at, between the muscle wall and the skin wall where fat deposits.
As far as it showing, that depends on your body weight and how much fat you have betwen the muscle and the skin. If there is enough fat, they basclly scoop a pocket out and place the pump into the depressin . If you have no Body fat, they have to stretch your skin over the thing. I saw a girl who was having hers removed and she was probably 5. 6' and 115lbs. Yoiu could see the fill port she had so little fat in her body. It looked like a Tuna can slipped under the skin. The more weight I lose the more I can see it and the more proment it is, but this makes it easy for your doc to find the fill port when doing the refills, eanywhere from 28 days to 120 day s apart with the new pumps that have larger resevoirs.
Over 50, I am curious as to what changed from the time you needed to have a pump implanted to when you decided to take another job or return to work? Did you have more surgery and get things fixed, did you get so much relief from the pump you were able to rehab yourself when you hadn't been able to in the past with oral opiates?
Where's the cure that allows you to do this? I guess I'm, wondering why a pump would be implanted if you could have gotten by on oral meds in the first place.
For Ashley if your hoping that if oral meds can reduce your pain level say down to a 5 and your hoping a pump will reduce your pain down to a 2, It really depends on what's wrong with you and why you need to go to a pump. It is posible that the can deliver more meds with less side effects and get your pain down, or they may simpy be able to get you to the same level with less cognative side effects. There is no way to gaurentee what results you will get but you do a trial of the pumpprior to having one implanted. A good pump trial is one that relieves 50% of your pain.
They can use morphine, Dilaudid, fentanyl , suffentanyl or Prialt "the cone snail toxin" and there are a few adjunct meds that can be used. But the pump is just a tol to deliver meds more eficiently, it's not a ure all and you can easily be disapointed if your expecting it to be a miracle and restore you old life.
Everyone gets from pont A to point B in a different way. Some docs would rather use a pump because they require less maint and it's more profitable for them and doesn't draw attn to their prescribing practices. OTher docs use them as a last resort when you can't find relief or tolerable relief without intolerable side effects to oral meds. I couldn't stand another day on oral meds so having my head cleared was great but I basaicaly get about the same level of relief, 50% on good days.
It is out patient surgery and it takes time to adjust a pump, It took 16 adjustments over the first 6 months to reach the same level of relief I had with orals. I also know people that are still titrating and on their 3rd opiate and 2 adjunct med after 2 years. You have to go much slower with pumps and there is no quick way around titration. There just isn't a one answer fits all and you have to have realistic expectatins of what the pump can do. It's just anther tool to help manage intractable pain.
Nice to meet Ya, 50 and if your still planing on having children Ashley you may want to hold off on the pump idea or do alot of reading. You have to consider that women of child bearing age were not the orignl pump recipients , so studies done on hormonal changes really didn't matter as much to the older folks with cancer. It's done a number on my testosterone levels but I finally have hat under control. But it could geatly interfere with having a baby. Just the tummy growing would pull on the catheter that lays just under the skin and wraps around your side.
Sorry to be long wided.I am curious 50 as to what changed physically to allow you to shut the pump off.
Take care, Dave
Ashley: Sorry you have suffered for so long. Here are answers to your questions.
1. Pump is implanted just under the skin (within about half an inch of the surface), and centered about two inches to the right of my belly button. I believe most intrathecal pumps are put in that location to facilitate refills. Also, a key component of the system is the catheter (or thin tube) that is placed under the skin and wraps around to the intrathecal space in your spine (this is where the analgesic is infused).
2. For me, pump was implanted using a spinal block. Two incisions are made (a five-inch incision on your stomach, and a one or two-inch incision on your back). The procedure was done in an outpatient-type surgery center in Santa Monica, CA. Procedure was done in the morning, I spent the night, and went home the next day. Fine-tuning of the amount of analgesic infused was done in the doctor's office, and is accomplished electronically (via commands from a hand-held device held close to the pump). I was walking around the day after the implantation, albeit slowly.
3. Pump works by infusing an analgesic directly into your spinal canal. (NOTE: I believe I was told all pain sensations, anywhere in your body, originate in the nerves of the spine before signals are sent to the brain). Sorry I can't give you a more scientific or medical explanation, but if you go to Medtronic's website, they may have a more precise explanation). The doctor refills the pump at an interval depending on how much analgesic is infused. For me, it started at once every 30 days, and toward the end, just prior to turning off the pump, I was refilled once every 90 to 120 days. The refill procedure is usually quick, and takes a routine office visit.
4. Pump has never interfered with my daily life, except for one small inconvenience. I travel a lot via airplanes, and since 9/11, I always get extra attention because the pump activates their alarms. It's not a big deal. I have a personalized card from Medtronic that explains what's inside me, but TSA still inspects every other part of my body with their metal-detecting wand. The pump and catheter can be felt by anyone (it's the size of a hockey puck), but it's completely inside your body.
5. The type of analgesic inside the pump varies. For me, it was pure, liquified morphine. I remember my doctor telling me he was experimenting with other analgesics (NOTE: in 1998, these pumps were still a novelty, and I may have, unwittingly, been a part of Medtronic's research program. Why do I think this? The Medtronic Representative was inside the room when my pump was surgically emplaced). When morphine enters your body via the spinal canal, it doesn't go directly to your bloodstream, so I never felt the side-effects of an opiate. What I felt was IMMEDIATE and EXTREMELY effective pain reduction.
6. If you look close enough, you can see a slight bulge where the pump is implanted. However, it is easily hidden by clothing. This is more of a concern to a woman, especially if you are on the thin side.
7. From the pump, I received 90 to 100% pain reduction, far more than taking any oral analgesic. Prior to the pump, I was taking 80 mg of Oxycontin three times a day, and I had additional Vicodin ES on hand. Today, that may not seem to be a lot of oral pain medication, but remember, in 1997-1998, Pain Management was still in it's infancy, and my neurosurgeon hesitated to continue giving me oral opiates for the long term. Hence, that's why he referrred me to the PM doctor.
8. Pain level w/o pump and oral med: 6 (and intractable).
Pain level with pump: 1 to 2 (at times, no pain whatsoever)
Ashley, we have one more thing in common. I grew up in Oxnard, and was living there when the pump was implanted.
Prior to the pump, I was bedridden, declared disabled by the SSA, and miserable. Since the pump, I was able to rehabilitate myself by going to the gym, and I have held jobs in Japan, Thailand, Afghanistan, Washington, DC, and Korea.
Today, I still have pain, but most of the time, it's manageable.
Would I do it again, and do I recommend it? ABSOLUTELY! It changed my life!
Thanks for all the answers guys, its really helpful. I am young , only 20, but the pain is becoming unbearable. And as most of you know the more pain meds you take the more side effects. They have put me on Zofran (which is an anti-nausea med normally used for chemotherapy patients) but so far it hasnt worked all that well. It stops the nausea sometimes, so instead of being nauseous then throwing up i just throw up. And thats every day I throw up. I am SO SICK of the pain, and SO SICK of the side effects. The only problem I forsee is I am 5'1'' and 98 lbs. I'm pretty sure that the pump will be pretty visible. And I know I want to have children one day. A lot of children...so do you think a doctor would tell me if that would get in the way?? Or tell me that I'm not a good candidate because of that? Thanks for being so patient and so helpful. My doctor is Dr. Nirmala Hidalgo form the UCLA Pain and Spine Center in Santa Monica.