Pain pump problems

I got the pump 5.12.12. It flipped over on 9.7.12. They couldn't refill it on 10.10.12 so they surgically flipped it back over after fiddling with the fluoroscope for hours to determine if it was facing up or down. When the pump is upright it feels bumpy when it's flipped it feels like a smooth dome. They never checked the cath when the pump flipped. I was not getting adequate pain relief after the repair.

I kept complaining. Then docs suspect the catheter broke in early Dec after an airplane ride. The runway was bumpy so maybe the tip got sheared off. Since I had no difference in pain relief after the pump was flipped back over, I think the catheter was yanked out of my spine when the pump flipped. But the protocol for a flipped pump doesn't include checking the catheter.

I had a dye study on 12.6.12 and they repaired it 12.13.12. They couldn't take out the old catheter so they put a new one in right next to the old one. Then told me not to stand on my head because the free floating catheter could migrate into my brain. Lovely thought. Finally I was getting good pain relief.

I believe they should tell you all the risks and possible outcomes of a procedure. They never bothered to mention that removing the cath requires a laminectomy. They didn't mention there was a possibility of the cath breaking or the pump flipping.

No one told me that I should wear elastic waist pants either. After the flip, I switched to those because the tightness of a normal waistband could have contributed to the pump flipping. I was doing some digging in my garden on Labor Day weekend when it flipped. They told me it was OK to resume normal activities not realizing I have 13 flower beds and a veggie garden.

Then the catheter broke again in 7.4.13 after I rode my bicycle 3 miles. The very next day I had severe pain when getting out of bed. It was repaired on 7.16.13. Once again they put in a new catheter right next to the old one. This time it was broken at the connection coming from the pump and going around to portion of catheter going into the spine.

Now I have 3 catheters and it's nearly impossible to trace them to see if any of them are connected to the pump. First they did an X-ray. My PM doc said I was right it's broken. Then the NS wanted a CT scan. My PM doc argued with the NS saying it's too hard to see the cath through the 2 cm slices taken during a CT scan. The radiologist told her this in Dec and suggested she just order an X-ray. That time she ordered a MRI, CT scan and then the X-ray in that order.

After looking at the CT films my PM doc and the NS decided maybe it was still connected. I feel like it's broken in the front where the cath comes out of the pump. I have a strange sensation that I've never had before when I do a bolus. about 45 min later, it feels like something is stabbing me right below the pump along my C-section scar. I just noticed a painful huge lump in my lower back around L2/3.

I have a beeper or Patient Therapy Manager (PTM) to use 4x a day for break through pain meds. I push a button on the device after putting it over the pump. It releases meds directly into my spinal cord. So I go for a dye study on Thur which is the gold standard test. My doc said she's using anesthesia so maybe she plans on repairing it after the dye study. Of course I'm the only one with a pump with problems like this in their practice. She's been working with pumps for close to 15 years.

Including the SIJ surgery, that makes 5 surgeries since 4.2011. I can't keep doing this every 4-5 months. I keep asking if my sarcoidosis is playing a role in this. They say no.

This all started on 2.22.08, when ironically I was taking a bath to go to PT for a massage. I broke 2 vertebrae just putting on my socks. Who knew putting on socks the way we all do is dangerous if you have osteoporosis/penia? My T score (bone density) was -4.5 from a life long lack of growth hormone. My Rush University Med Center endocrinologist has me on growth hormone shots after I failed a stim test for growth hormone release.

My Rush University Med Center neurosurgeon (NS) said that the vertebrae were weak from being growth hormone deficient and collapsing. It's like stacking heavy cardboard boxes on top of an empty box. The empty box on the bottom eventually loses it's shape and falls inward or collapses making a strange shape. This he thought allowed the sarcoidosis to move in.

Eventually I ended up with 6 spine fractures and cysts in my sacro-iliac joints SIJ (probably more sarcoid.) Happy 50th birthday to me! I always thought osteoporosis was for old old ladies. It's not! Get a bone density study done after menopause.

The pain from the fractures has never gone away. I had balloon kyphoplasty on 3 levels and 3 fractures were left alone. There is a lot of bone cement that leaked out and a chip of bone cement on my L5 nerve root. My entire lower back L1-L5 was broken along with T10.

The SIJ pain was unbearable so I tried a new product called iFuse and went from IL to GA to have that done 4.11.11. I can't recommend that surgery/product to anyone. Others have had success with kyphoplasty, iFuse and the pain pump but I have not.

I am thinking of having the pain pump ex-planted. During all of this they have used the same pump device. I wonder if the one I have is defective in some way. I would be willing to consider one more try if they can guarantee me they'd put in a new device. This is my 3rd cath failure.

When it's working the pain relief is awesome. They keep telling me I have huge spinous process so they think that they are chopping the caths up. But that makes no sense and doesn't account for all the problems like the flip and the cath breaking at the connector which is no where near the spinous process.

http://en.wikipedia.org/wiki/Spinous_process

I'd also like to find a surgeon to remove my iFuse rods but so far no one will take that on. I'm looking for names of surgeons that are taking the tough spine cases as I also have a syrinx at T5. I don't know if I can ever find a surgeon willing to remove the iFuse, stand there long enough to remove the bone cement from where it doesn't belong, and fix all my issues including L5. Not sure what I want to do but I'd like to explore all my options. Thanks for any and all suggestions, advice, prayers etc.

Thanks Vicki! I'll check into that recall idea and retrace some of my steps. Medtronic reps are in the OR every time they do anything to the pump. If there was a problem with the model I have one would hope they would have mentioned it to the doc. The Medtronic company rep did inform them they had one recent case of a loose cath migrating into the brain of another patient back in Dec 12. After that my PM doc & NP were keen on getting the broken cath out. They sent me to a NS associated with the Chicago Back Institute. The plan was to remove the broken cath, get the iFuse rods out and the bone cement chip on L5. On the weekend before Christmas, the NS refused to do any part of the surgery.

I've looked in the FDA's MAUDE database for iFuse info but never did more than a glance at entries on the pump. The iFuse rods have been my focus because I have trouble sitting, standing & walking since those were put in. I feel I could live without the pump and go back to oral narcotics if that SIJ pain was gone.

NS #3 wanted a CT myelogram for both thoracic & lumbar. I wasn't too keen on doing that test so I have not followed up. Everyone on my SIJ forum who has had a discogram or myelogram has ended up with fusion but my insurance (Aetna) no longer covers arthrodesis; per back pain bulletin #0016!

The 4th NS had never seen an actual patient with iFuse rods before. He asked me loads of questions about weight bearing afterwards, ease of recovery, etc. I didn't think he'd be willing to remove them nor would I want him to since I knew more about them then he does. (I'm not a know-it-all but I sure have learned a lot from the 1,126+ SIJD patients on a FB forum where I am an admin.) It doesn't seem wise to have someone take them out when they have never put them in.

The titanium iFuse rods are a new device. I have seen every doc in Chicago who has done iFuse installations but that was 2011. Maybe there are NEW docs that I don't know about. I am willing to travel. The biggest problem with removal of iFuse rods is the holes in the illium. There are more SIJ devices in development but they could plug the holes with cadaver bone; creepy idea especially before Halloween.

I use to post here a few years ago. Mostly on the Lyme disease forum. What's going on with you Vicki? Knee & back pain seem to go hand-in-hand. I wish medical science could grow some new body parts using our own cells. These metal & plastic spare parts are not so great.

Hello Munch,wow what a story you have to tell, goodness. I have a pump, my first one was put in June 2005. I had to replace it this past February as my battery finally died. That pump was a Medtronics pump, it was replaced with a Codman that is not computerized like the Medtronics. When the new pump was put in the surgeon used the old catheter, he did not put a new one in.

I think the reason they try to salvage & use the old catheters is scar tissue. It would probably be a pretty extensive little surgery trying to remove these catheters because of so much scar tissue that has formed over the years.

Do you know if there are any recalls on your pump? You can call Medtronics or look on their website. My old pump was a model that had a couple of recalls, the most serious was a gear problem. I had no trouble with my pump so we left it in. Medtronic does not assume the responsibility of paying to take the old pumps out & putting a new one in either. They said Medtronics people go through the pumps ro see if they are defective, if found defective they would have givven me $1,000 for out of pocket expenses. I thought that was pretty cheap of them. Its not like it would break them.

When my first pump was put in the rep gave me a little booklet that gave the do's & don't with pumps. He also gave me a card to carry that had my pump info on it.

There is a group on Yahoo called Pumpsters, all those folks have pumps or are getting one. You will have to most likely join but they may be able to give you some insight here. Please let us know what you find out.....Susie

Just got a call from the hospital this afternoon with all those questions they ask before anesthesia about removal teeth, dentures, eye glasses, family reaction to anesthesia, etc etc. This would be my 21st surgery. SMH! I don't know what my doc plans other than a dye study. I've called her NP to find out though. She did the other 2 dye studies without anesthesia now all the sudden she's putting me out this time?

Screaming Eagle: I tried to join Pumpsters before I got the pump in May 12 but they never responded to my request. I'd still like to be in the group. Tame the Pain doesn't really tell it like it is.

Susie/Straydog: $1,000 doesn't even cover the medical bills. It's about what we spent on gas driving 2 hours to the hospital. What a joke. There is always a Medtronic rep in the OR. If my pump was recalled wouldn't they have said something and swapped it out by now? I believe I still have the original pump in there. The NS my PM doc sent me to last time was going to replace the pump after 3 cath failures but it was only my 2nd.

I was just reading about Codman pumps today. That is great that you won't have to have anymore replacements for the dead battery. In order to remove the catheters, they need to do a laminectomy. Of course no one bothered to mention that beforehand. I've got 2 caths sitting down my L5-S1 and the third is up higher near L2.

http://en.wikipedia.org/wiki/Laminectomy

I have my books, wallet card, PTM book, etc. I've even got the Medtronic rep on speed dial on my phones.

Merrida: Happy Anniversary! I am admin of a FB group with 1,100+ people with SIJD or sacroiliac joint dysfunction. The iFuse rods are not what they advertise them to be.

A few people in the group ended up in wheelchairs post-op and others developed MORE pain then they had before the surgery. DIANA/DIALOG seems to be a bit better but some people have returned 3 years later with problems per my friend in the Netherlands.

There are more SIJ devices in development. The recovery the docs say is 6 weeks but the patients are saying it's more like 1-2 years. Your SIJ are your body's shock absorbers. Fusing them makes no sense. I think Medtronic is in the SIJ game too. After my pump experience, I wouldn't want to try another of their products.