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Posted 7/19/2015 5:56 AM (GMT 0)
Hello! I suffer from chronic pain due to diastematemyelia, tethered cord syndrome, arachnoiditis, and fibromylasia. I had my first spinal cord surgery in 1998, followed by 6 more with the last one being in 2002. I have been on numerous medications since that time and now I am on fentanyl patches 100mcg every 48 hours, oxycodone 4 times daily, neurontin 3600 Mg daily, mobic 15 Mg daily, and some others. I am basically maxed out. I have been approved for a pain pump both psychologically and through a pain pump trial. My surgery is scheduled next week. I am nervous, yet hopeful about this surgery.

My neurosurgeon asked me if I wanted the pump placed in my abdomen or posteriorly in my hip. At the advice of my nurse practitioner, I told him abdominally. She thinks it is more comfortable there if you are a back sleeper and I am most of the time. I just hope I am making the right choice about location. I wanted to hear some pros and cons from you all who are experienced with this. I am a small framed, petite woman and I am also concerned about it bothering me more in this location. My husband jokes with me and calls me "Princess and the Pea" because simple things cause me discomfort. He is worried that I will be bothered by "feeling it all the time." I have read a couple of posts already from straydog and bakersman and I am already less anxious. But, any advice from you with pain pumps will be greatly appreciated. I am really interested in hearing about pros and cons of location.

Thank you in advance for all your help. It seems, we are all in this together and it is great to hear from others who "really know how you feel."

Thanks again for allowing me in your group.
Posted 7/19/2015 9:24 AM (GMT 0)
Hi Catwoman...

I'd definitely go for abdo. I have both pump and spinal cord stimulator - my SCS I was given the option of abdo or the top of my hip/buttock area - surgeon wanted buttock, I pushed for abdo and so glad I did. I still find both of mine rather uncomfortable (have had my SCS a bit over 9 years, pump is coming up 7, though had it replaced late last year when the battery died) - that is part and parcel of having CRPS I think - but I can't imagine how much more so it would be having it posterior as I use a wheelchair most of the time because of dystonia - and the rest of the time I use crutches and prop my backside on chairs or against the table - right on the point the implant would be if it wasn't in front.

The biggest problem I have, and I'm fine & fairly short (though I think in other discussions we've worked out that Susie/Straydog is a good couple of inches shorter than me and DOESN'T have this problem...though hers is Codman, mine - and most others are Medtronic - no idea if there's an appreciable size difference? She might know as I think she's had both) is that sitting - especially if I need to bend forward - my pump tends to knock into my lower ribs. I've also got to be careful with trousers - I tend to live in trackies - as anything that sits over my scar line drives me nuts due to the sensitivity & that flares up every time I have my pump filled - which for me is every 5 weeks. I do "feel mine all the time" as you put it, less than I did - but my nervous system is hypersensitive and anything sends it into overdrive, which was something I was aware of with each surgery - just a matter of benefit vs cost as with everything. And the benefit has definitely been worth it. For most people it does settle over time and I'm sure the others will be able to put that worry at rest.

Laura
Posted 7/19/2015 3:19 PM (GMT 0)
Hello & welcome to the forum. I have had both Medtronics & a Codman pump implanted & they were in the abdomen. When the Codman was out in 2 years ago my dr said it was bigger than the Medtronics pumps but I should not have any trouble with it. I would never consider having mine anywhere else. I guess I am the lucky one. I honestly cannot imagine having one implanted in the hip, for me that would be a disaster because I am quite sure I would be knocking the heck out of all the time, lol. In my mind it would be a little uncomfortable having a refill done in the hip. I feel like I suffer enough pain, sure not going to add to the mix. Laura has had issues with hers as far as being comfortable with the location. I honestly have never had any issues with comfort except while healing after each surgery which is to be expected. I too am short, the last time they measured me I had shrunk to 4"11". It would not surprise me if I were even shorter because of severe osteoporosis of the spine.

I wish you the best on your surgery & we will be rooting for you to have a quick recovery. If any of us can answer any other questions we will try to help you in any way. Take care.

I know the pumps can be implanted too deep or too shallow which can cause issues. I do not really know my pump is there unless I hit it on something or if I were to wear something around the waist too snug. I am very short & sometimes I have hit it on the washing machine when trying to get something out of the backside of it. My tub is rather deep & it can be a challenge, lol. When working in a flower bed if I were to twist to the side that would also get my attn.. Does it hurt when you bump it, sure, but not something that is going to ruin my day or put me down.

Hopefully once you are healed after your surgery you will not have any issues with the comfort end of things. It will take you some time to get past having something implanted but the best thing you can do is go about your normal day like you normally would.
Posted 7/19/2015 11:25 PM (GMT 0)
Hi Catwoman30 and let me also Welcome You to Healing Well Chronic Pain Forum! I had my pump put in just over a year ago, and it was placed in my abdominal area, on my left side. The only thing I might suggest that you talk to your doctor about is the depth that it is placed. Mine is just under the surface and it sticks out quite a bit, and when bumped it really hurts, I am about 5'8" and if I bump into the side of the recliner or what ever it really lets me know! (allot!!) I talked to my PM about it, and was told if it really bothered me allot they could go back and re-implant it deeper. But of course with having surgery, I would also run the risk of possible infection and possibly even losing the pump! So.... For me I did not think it was worth the risk! I am just allot more careful, and put up with the soreness, also there is the advantage of its superficial location being easier to access.

Anyway I get mine refilled every six months, and I have the Medtronics with the PTM, and for break through pain with the PTM I can give myself up to ten preprogramed bolus doses in a 24 hour period, but no sooner than two hours between each bolus dose!. I have found this device extremely helpful at times!

I will say that I wish I would have gotten the pump along time ago as I find it allot better than taking oral pain medications all the time. However with that said there are some draw backs with having the pump, it is great for controlling pain in a given area, for me it is great at controlling my lower back and sciatica pain! But if you have back problems in multiple areas like I do, it does nothing for the pain originating in my cervical and thoracic area of my spine!

Again I Welcome you to the forum! I do wish you well and hope everything goes great with your surgery! Good Luck to YOU!

White Beard
Posted 7/20/2015 3:39 AM (GMT 0)
Laura, Thanks for that information on the location of the pump. I am feeling much better about my decision after reading your post. I, too, am short so I may have a few of the same problems as you.

I hope that after the healing process that I can just forget that I feel it being there.

Will keep ya'll posted.

Cathy aka Catwoman30
Posted 7/20/2015 4:00 AM (GMT 0)
Straydog, Thanks for your reply to my concern about the location of the pain pump. I will remember your advice about just going through my day in a normal way, after I am healed from surgery.

My husband is going to take off work to take care of me after surgery. My doctor told me that I would have to spend one night in the hospital mainly because I have a tendency to leak spinal fluid after surgery. How long should I expect to he out of commission following surgery? All of my family except one daughter lives in another town and I don't have much help other than my husband. My daughter works full time and has a 2 yr old so she stays very busy. I thought that I would probably be ok on my own after 3-4 days. But, didn't know when I would be able to drive.

If I think of any more questions, I will certainly call upon ya'll.

Thanks so much,
Cathy aka Catwoman30
Posted 7/20/2015 4:18 AM (GMT 0)
White Beard,

Thank you for the advice on discussing the depth of the pain pump with my doctor. This issue was not mentioned in my Medtronic information.

I am nervous, yet hopeful that this is the best option for me at this time. I have been on numerous po pain meds and patches since 2002, and I have run out of options.

This seems to be a really informative forum. I will keep ya'll posted. Thanks again for all the great information.

Cathy aka Catwoman30
Posted 7/20/2015 5:41 PM (GMT 0)
I don't know what I am doing this morning but this is the 3rd time I have tried posting to you & have lost 2 other posts, lol. Jeesh, is it Monday or something!!!

You asked about the recovery time & hopefully yours will be quick & uneventful like mine have been. I slept the evening away both times I have had pumps put in. That was the result of the anesthesia I was given. I am sure for a few days I was moving a little slower than usual but I was able to take care of my own needs. I was up moving around a lot mainly because I am not one that can just sit or lay around watching tv. I did drive myself to the drs to have my stitches taken out I do remember that. I honestly cannot remember if there was a driving restriction or not. Since your husband will be home with you a few days hopefully when he returns back to work you will be doing ok.

When up moving around just make sure you don't bump into something with your stomach. If you have a top load washing machine like me, they can be easy to bump.

Be sure to talk to your dr about using the PTM before you have your surgery. From what I have been told the PTM comes with the pump as a set and insurance pays for them. I think now more drs now allow the patients to use them. When they first came out some drs said no to the patient using them & that is just nuts in my book. The patient cannot abuse them, they are set & controlled by whatever setting the dr programs it to be.
Posted 7/30/2015 5:13 AM (GMT 0)
Well I finally got my pump implanted on Friday, July 24th. I haven't posted sooner because my surgery did not go without complications, unfortunately. There was nerve involvement, very similar to what happened with my pump trial. I had to stay overnight because they could not get my pain under control and at one point they even discussed taking me back to surgery. I was in horrible pain all evening and night on Friday. In recovery, where they kept me for over 6 hours, they gave me demerol, morphine, fentanyl, and dilaudid. And they continued my home meds of neurontin and oxycodone. The nurses were freaking out but the doctor explained that I was on such high doses of pain meds at home and had been for years that I had built up a high tolerance.

I went home on Saturday with the nerve pain still severe. It was a long weekend that I thought would never end with lots of thrashing and crying. The pain was in my right leg and I also lost function of my right leg.

The pain has gotten less each day and I haven't cried once today; however, I still havent gotten function back in my right leg. My husband is having to wheel me in my old wheelchair and lift me in and out for now. Hopeful that things will be back to normal in a few more days when the nerves settle down. I have had very little discomfort from my stapled incision on my abdomen or my sutured incision on my back. As far as my pump placement, all that is going well. I go back for my follow up on August 5th and hope to get my pump filled with morphine that same day. He filled it with saline when he inserted it.

If I had not had the nerve complications, this surgery would have been a breeze. Hoping the next few days bring improvement with my right leg and hope that I sleep better tonight with less pain meds and muscle relaxers.

Just wanted to give y'all an update and say thank you for all the questions you answered before my surgery. Cant wait to get my pump filled and get this show on the road.

Catwoman30
Posted 7/30/2015 8:07 AM (GMT 0)
Oh wow sounds like a nightmare! However glad to see it's improving some and hoping you continue to heal. Good luck and thank you for your update and keep us posted.
Posted 7/30/2015 2:57 PM (GMT 0)
Hi Cat!

Wowzer! I'm sorry you are going through this.

I had surgery on July 10 for my pump. I chose the hip placement and so far it's ok. My doc filled mine during surgery and it's been wonderful. I hope you receive a pain free life soon! Or at least diminished pain.

Let us know how you are.
Michele
Posted 7/30/2015 5:25 PM (GMT 0)
So sorry to read what happened during surgery, what a mess. Hopefully this nerve business will clear up real soon.

These drs all have a different way of handling these pumps that is for sure. My pumps were always filled at the time of implant too. However, when I get my new pump put in it will not be filled at the time of implanting it. my PM dr has to adjust my dosage because the pump is not working right if I were to get my normal dose he said I would not wake up.

Keep us posted on how you are doing.
Posted 7/31/2015 12:02 PM (GMT 0)
What an ordeal you went through, I hope it has gotten better for you. I consider myself very blessed as I didn't have to go through anything like that, in fact as apprehensive as I was about getting the pump, had I read your post six months ago, I might have backed out. I chose to have mine placed in my hip because my biggest concern and worry about getting the pump was that I'm very active and I was afraid that the things I do that involve twisting and turning a lot (I play golf, water aerobics and do a lot of gardening) and in the hip it would be less likely to kink the tube. The morphine I take enabled me to stay active and I called them my magic pills, without them I would be very sedate. Last week when i had a low dose and they had cut some of my orals the pain came back and it had been awhile since I had felt my pain like that, it is excruciating as you all know. I like where he placed it in my hip because two weeks later I am able to sleep on either side and on my stomach. Yesterday I was driving and I did have a bit of discomfort tho from the tube that runs up my spine, but I am sure that's because it hasn't settled in yet. Best of luck to you, please do keep us posted on your progress and I hope you are pain free or at least at a very manageable level soon.
Posted 8/2/2015 3:35 AM (GMT 0)
basically as far a i understand it, if, for example you sustained nerve damage in your leg and foot from fusion surgery at L4-S1 even with pump you would still need to treat the foort neuropathic pain with other means? and if you require breakthrough oral tablets i imagine you would need much less. would you say the implanted pump gave you part of your life back? i guess it is time to go for it. with Affordable care act now stopping me from having Anthem allow coverage on same generic meds i have filled every month suddenly plus law states if your insurance company will not allow 100% coverage you may not purchase med even for cash money. this is not just controlled substances. in last week i was in ER all night 3 times because meds could not be accquired from Riteaid. i cant live like this so i have an appt with the main pump guy in Hampton Roads, VA and he is very compassionate. tech. i have a lot of room to go with oral meds and i would rather not have a implanted device but getting backed into a corner. any advice would be welcomed. geed night all
Posted 8/5/2015 4:42 AM (GMT 0)
Hey guys!

Just checking in with ya'll to see how everyone is doing. My nerve pain has gotten less but I am still having to use my walker or wheelchair to get around. I return to the doctor tomorrow to get my sutures removed from my back and the staples removed from my abdomen. Then, I am going to my other doctor to finally get my pump filled. I am both nervous and excited.

straydog, you mentioned a PTM that came with your pump? Which pump was that? You mentioned two different ones. Mine is a Synchromed II by Medtronics.

Well, will let young all know how things go. Have a good night!

Catwoman30
Posted 8/5/2015 6:34 PM (GMT 0)
Catwoman, just got on & saw this. Yes, it is the Medtronics pump that the PTM comes with. Ask your dr where your PTM is at, should have been in the box with your pump.
Posted 8/5/2015 8:34 PM (GMT 0)
So very sorry about the complications you've had. I hope things impove for you very soon. Many prayers and well wishes to you...
Posted 8/8/2015 10:13 PM (GMT 0)
Hi straydog,

I asked my doctor about a PTM and they do have it. They have a policy where they issue you a PTM after they get your dosage leveled off. But they do have mine. Thank you for telling me about it, because that was the first that I had heard about it.

The neurosurgeon who did my surgery put me on a round of steroids. They are hoping that it relieves my nerve pain and inflammation.

Take Care.

Catwoman30
Posted 8/8/2015 10:18 PM (GMT 0)
Hi Chartreux,

Thank you so much for your kind and encouraging words and for your prayers. It has been a rough haul, but you know we are all in this together and we have to stick together and support each other. Everyone on this forum so far, has been very kind and supportive.

I am still having to depend on a walker to get around until this nerve involvement settles down. The neurosurgeon started me on a round of steroids. I am hopeful that the steroids will speed up the process.

Take care. You will also be in my thoughts and prayers.

Catwoman30
Posted 8/9/2015 3:27 PM (GMT 0)
I sure hope the steroids will kick in & give you some relief. You sure have had an ordeal to deal with.

Keep us posted on how you are doing.
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